Ask CancerCare: All Questions

My father has multiple myeloma and it is disheartening to see to him lose weight. He is 74 years old and I wish I could do much more for his pain. Can you recommend nutritional and pain resources?

Thu, 23 May 2013 00:00:00 -0400

Caring for a loved one with cancer can be difficult. It is admirable and not uncommon to want to ease your loved ones pain. As physical changes occur, it can be especially overwhelming and may bring up feelings of helplessness. Reaching out and gathering information as you have done is an important and helpful step.

Many patients do experience changes in weight, including weight loss. These changes are common and can be caused by a number of factors including poor appetite, fatigue or treatment side effects. It is important to talk with your father’s medical team so that the weight loss may be evaluated. You can also request a referral to meet with a dietician who can work closely with your father to maintain a healthy weight. The following CancerCare fact sheets offer additional information on nutrition: Coping With Caner-Related Weight Changes and Muscle Loss and Tips for Managing Nausea and Increasing Appetite During Cancer Treatment. More information on locating an oncology dietician can be found at www.oncologynutrition.org.

Bone pain is another common side effect of multiple myeloma. Again, communicating with your father’s medical team will be an essential component to managing his pain. Remember, your father is the expert in what he is feeling; informing his doctors about the severity, location, and type of pain he is experiencing can help determine an appropriate approach to pain relief or reduction. Doctors may recommend managing bone pain by: wearing a brace, having radiation therapy or taking pain medications. If pain persists he may also consider consulting with a pain specialist. To locate a pain specialist, you may visit www.americanpainsociety.org.

More information on pain can be found in our publications, Controlling Cancer Pain: What You Need to Know to Get Relief and Opening the Door to Effective Pain Management: Getting the Facts and Getting Help. You may also be interested in registering for our upcoming CancerCare Connect Education Workshop™ featuring the topic, Managing Cancer Pain: What You Need to Know.

My sister has been diagnosed with multiple myeloma and I'd like to share info and services that might be helpful to her. Could you please give me recommendations?

Thu, 16 May 2013 00:00:00 -0400

Learning about a new diagnosis can be extremely difficult and overwhelming both for the patient as well as loved ones. Gathering information and resources is certainly an important step. Beginning to form a foundation of knowledge can help alleviate some of the stress and anxiety.

Multiple myeloma is a blood cancer that begins in white blood cells called plasma cells. Over time these abnormal plasma cells may collect in the bone marrow and bones. While some individuals may not experience any symptoms, some common symptoms of multiple myeloma may include bone pain or broken bones, fatigue and infection. Doctors often do a bone marrow biopsy to determine the staging of the cancer which can range from smoldering (asymptomatic) to stage three. Learning the stage of the disease can help doctors determine the best treatment plan. It is important to ask questions and have open communication with your treatment team in order to better understand treatment choices, expected results and any possible side effects. More information can be found in our booklet, Communicating With Your Health Care Team.

Coping with a new diagnosis can also be emotionally challenging for both the patient and loved ones. CancerCare offers a number of free support services including individual counseling and telephone and online support groups for anyone that has been affected by cancer. For more information, you may speak with one of our oncology social workers by calling 1-800-813-HOPE (4673), or visit the multiple myeloma section of our website.

As cancer treatments may also impose financial burdens, many organizations also have financial assistance programs. CancerCare’s Door to Door Program offers a reimbursement grant to help cover travel-related expenses. The following organizations also offer co-payment assistance: Chronic Disease Fund, Patient Advocate Foundation and Patient Access Network. Funding may change, so please check each organization’s website for up-to-date financial assistance information.

You may also be interested in registering for our upcoming CancerCare Connect Education Workshop: Progress in the Treatment of Multiple Myeloma.

Additional resources include International Myeloma Foundation, Leukemia & Lymphoma Society and Multiple Myeloma Research Foundation.

I am 66 years old, was diagnosed with multiple myeloma 2005, and have been in remission for 40 months on Velcade infusion maintenence. I've had tendinitis and bursitis developing over the past 6 months, and increasing 4 weeks ago. In the past four weeks it got to the point where I could not stand or walk, and had to stop working. MRI and then PET scans showed a lesion in the femur (no impending fracture). It was treated with 5 days of radiotherapy at that point. The restaging work up of my myeloma was stable. The problem is that the oncologist is saying the bursitis and tendinitis, is unrelated to that lesion or the multiple myeloma, or the drug. Pain is still leaving me incapacitated despite cortisone injections last week. I see my doctor in 2 weeks, who is letting the local oncologist manage the case until then. This is causing a lot of anxiety with my wife (my caregiver) and decisions about work and finances. There does appear to be much available info that I can find, and my "care team" is not regularly providing anything other than analgesics.

Wed, 08 May 2013 00:00:00 -0400

It sounds like you have been faced with a lot of uncertainty and confusion since the development of your bursitis and tendonitis. Compounded with the overall uncertainty of cancer, this can undoubtedly be unnerving.

Pain can often become so severe that it impacts your daily routine, and can interfere with work and family life. Having been diagnosed with multiple myeloma, it is understandable that you may correlate this pain with your diagnosis, as one of the most common symptoms of multiple myeloma is bone pain. However, as your medical team has indicated, the pain may be unrelated.

It is understandable that you are feeling frustrated by the lack of explanation and the inability to determine a cause for your pain. This frustration can even overshadow the positive news of your stable test results. As this pain is continuing to impact your daily life, ask your doctor for a referral to a pain management specialist who can work closely with you to help you find relief.

More information can be found in our publications, Controlling Cancer Pain: What You Need to Know to Get Relief and Opening the Door to Effective Pain Management: Getting the Facts and Getting Help.

You may also be interested in registering for our upcoming CancerCare Connect Education Workshop™ featuring the topic, Managing Cancer Pain: What You Need to Know.

More information on locating a pain specialist can be found at www.americanpainsociety.org.

I want to ask my oncologist about other types of treatments, but am concerned she might think I'm questioning what she has recommended. Is this something most patients do and how should I bring up?

Mon, 29 Apr 2013 00:00:00 -0400

The issue of exploring “other” treatments, which differ from recommended treatments your doctor has prescribed, is a topic that many patients would like to discuss with their doctors. However, some patients report feeling concerned that this discussion could affect the relationship and quality of their care. Patients may feel that their doctors are so busy that the appointments are rushed and information is given in unfamiliar medical terms, or that they do not know what to ask or feel intimidated.

A patient’s relationship with his/her doctor is both a professional and personal one. We believe that our doctors and the health care team will be medically effective and, at the same time, compassionate in caring for us. Good doctor/patient communication is key, and communicating effectively with the doctor is a skill that may need attention and practice.

CancerCare’s publication “Doctor, Can We Talk?”: Tips for Communicating with Your Health Care Team suggests a number of recommendations:

Before the Appointment

Remember you are the consumer, and the best consumer is an informed consumer. Learn about your cancer and possible treatments. Know who is on your health care team, including the nurses, social workers and patient navigators.

Create a journal or binder of your cancer experiences. Note the dates of your appointments, the names and contact information of your health care team, as well as a list of medications with dosages. You can also keep a diary of side effects as well as questions that you have for your next appointment. Writing down questions before your appointment will help you feel more organized. If your doctor is open to this suggestion, send your questions to the doctor before the appointment.

During the Appointment

Write down your doctor’s comments, advice and answers to your questions. If you feel that this will not work for you, bring someone to the appointment who can do this for you or ask if you can record the appointment.

Try to be focused and to the point. Explain your cancer experience clearly and briefly, including symptoms and medication side effects.

Ask the doctor to repeat a comment, use language that easy to understand, or even to slow down. If something is unclear, repeat it to the doctor as you have heard it. Be assertive but also be understanding. If the doctor is in a rush, ask if there is another member of the team, such as a nurse or social worker, who can answer your questions.

Through the use of the Internet, there is an abundance of medical information as well as opportunities to connect with people in a similar situation. Doctors report that they are very aware that patients have greater access to medical information and are often more educated about their cancer and treatment than in years past. Many doctors are prepared and are available for more in-depth discussions with their patients. Keep in mind that doctors may not know all there is to know about every cancer and its treatment. Many doctors welcome information, questions and discussions of other treatments. In fact, some physicians have stated that they have learned about other treatments because of information that a patient presented.

It is suggested to ask your doctor how he/she feels about your bringing in research and information about your cancer and asking questions about “other” treatments. This will give you some insight as to what your doctor may or may not feel comfortable discussing.

Professional oncology social workers can help you learn to better communicate with your doctor and health care team. Call CancerCare at 800-813-HOPE (4673) to speak with a social worker.

I'm thinking of getting a second opinion. How should I approach this? Do I tell my doctor?

Tue, 16 Apr 2013 00:00:00 -0400

People who are diagnosed with cancer often experience a wide range of emotions–anxiety, sadness, anger, fear, confusion, as well as a sense of urgency to get into treatment as soon as possible. Usually with a new diagnosis there is a period of time, depending on the cancer type and stage, before treatment begins. During this time, getting a second opinion is considered a routine, essential and necessary component of one’s health care plan.

Many patients feel reluctant and resistant to seek a second opinion. Studies have shown that most patients and caregivers are concerned that asking their doctor about a second opinion will create an uncomfortable relationship with that doctor, which may negatively affect their medical care. Other patients may be confused by the complexity of the healthcare system, are too overwhelmed by their diagnosis or too intimidated, or are not aware that they have that right to a second opinion.

However, most medical professionals expect a patient to get a second opinion. In fact, some insurance companies recommend, and even require, a second opinion.

Discuss getting a second opinion with the doctor who diagnosed you. Most doctors welcome a second opinion. It provides them with either confirmation of their diagnosis and treatment, more details about their diagnosis, additional treatment options or recommendations for alternative diagnoses and treatments. Your doctor may have suggestions or referrals. If not, contact a medical society associated with your cancer, academic medical institution or a National Cancer Institute designated facility. It is strongly advised that one go for a second opinion at a different medical institution, since this will involve different clinics and pathologists. If your doctor is not open to, or responds negatively to the idea of a second opinion, you may want to consider whether this is the doctor with whom you want to work.

Here is a list of situations where a second opinion may be important:

You have a rare, unusual, terminal or incurable cancer;
You feel uncomfortable with your doctor, the diagnosis or you need confirmation;
Your health insurance requires it;
You want the medical opinion of a specialist for your type of cancer;
The treatments offered has side affects or risks that you find unacceptable;
The treatment options will result in unacceptable or unreasonable demands on your life and your family;
Your doctor’s treatment goals are different from your own;
You are interested in clinical trials or alternative therapies;
Your cancer is not responding to your current treatment.

The American Medical Association’s Patients’ Bill of Rights states that “The patient has the right to and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information concerning diagnosis, treatment, and prognosis.” Obtaining a second opinion is regarded as a right.

CancerCare’s professional oncology social workers can answer your questions about getting a second opinion. To speak with a professional oncology social worker, call 800-813-HOPE (4673).

I've been on chemotherapy and have noticed a blurriness that comes and goes. Could the chemo be the culprit?

Thu, 14 Mar 2013 00:00:00 -0400

Many patients experience eye issues during cancer treatment. Symptoms may include irritated or dry eyes, tearing, redness, pain, and blurred vision.

First, we urge you to contact your oncologist, who should always be notified about any physical changes you may experience during your cancer treatment. If you can, try to track the timing, severity and duration of your blurriness to see if there are any patterns to report to your doctor.

You may also want to have an ophthalmologist check your eyes to rule out any concerns unrelated to cancer. Some people have other health conditions and take medications that may affect vision, and it’s important to rule out any other factors that might be contributing to your vision blurriness.

The National Cancer Institute offers chemotherapy side effect information that specifically covers possible eye changes during treatment, including that certain types of chemotherapy may clog the tear ducts, leading to blurry vision.

In my journal, I tend to write the unkind things that I wouldn't say in person. Should I destroy these journals so my loved ones don't read them after I am gone and suffer or should I leave them as an honest expression of my feelings at the time?

Fri, 01 Mar 2013 00:00:00 -0500

Journaling is a wonderful means of self expression, allowing us to manage our feelings and express emotions, some of which may be negative and perhaps not meant to be voiced aloud. Writing enables us to vent these feelings in a safe place: your own collection of personal thoughts.

For most people, writing is private. You would feel upset if a family member came to your home and read your journal without your consent. If you keep your journals, chances are they will be read. As you are voicing concern regarding what is contained in your writing, I would listen to those feelings and consider how these journal entries might impact those you love.

If what you wrote are feelings that you want to share, I’d encourage you to do this in person so that the emotions can be put in context and there can be a give and take discussion about these personal thoughts and feelings. If you are not comfortable doing this, I would consider the consequences that what is contained in the journals could cause hurt to your family and possibly complicate their grief. If you do not want this to occur, I would make sure to secure your journal in a safe place to ensure they remain private.

Is there ever a time when it isn't good to write or keep a journal? I sometimes wonder if I feel more upset after I write about being diagnosed with cancer and what I'm feeling.

Fri, 22 Feb 2013 00:00:00 -0500

“Words are a lens to focus one’s mind.” – Ayn Rand

Writing can help us to decrease our stress level by helping us to process our feelings and clarify our thoughts. Journaling about your anxieties and fears without incorporating thoughts, hopes and goals can sometimes cause increased stress. It is important to take time to write about the things which bring happiness to you, too.

It may be that you need to start slowly with your journaling. Perhaps simply write for five minutes a day, not necessarily about your cancer but whatever thoughts are in your mind. You can journal about a childhood memory, reflect about a family member, or write down the last time something made you smile or laugh out loud. Select an object in your home and describe it using all of your senses. Many people find that they begin journaling by simply taking pen to paper and writing one thing each day that they are grateful for. As you become more comfortable with writing, you can slowly expand your efforts to explore how you are feeling about your diagnosis and the many emotions that come hand in hand with a cancer diagnosis.

There is no “right” or “wrong” way to journal. Writing is whatever you decide it will be – a story, a poem, random thoughts or words, memories, hopes and fears. Hopefully it will provide an outlet for your feelings and, in time, will decrease your stress level. Only you can know if journaling is a positive outlet for you. If writing causes you more upset than happiness or is causing you to feel overwhelmed, perhaps take a break and find another activity which brings you comfort during this challenging time. It is important to remember that if you are experiencing feelings of depression to seek help from a professional. Writing may be an important and helpful tool in your healing but is not the only method of support.

I have been keeping a journal since I was diagnosed. I wrote in it daily in the beginning and currently write only once or twice a week. Is it better to have a separate journal for each month or just one? I eventually hope to write a book about my cancer experience and will use my journal entries to help me. Any suggestions?

Wed, 13 Feb 2013 00:00:00 -0500

I think it is wonderful that you have utilized journaling and that you started writing upon learning of your diagnosis, continuing to the present time. Few experiences in life are as difficult as learning that you have a diagnosis of cancer. Powerful emotions are stirred up which can be overwhelming and frightening, with many people feeling as if their world has been turned upside down. Writing is a way to give a voice to these feelings such as fear, anger, sadness and loss which may be difficult to express aloud. Putting thoughts to paper can help people feel less overwhelmed and allow them to process these complicated emotions so they can move forward. Many studies show that in addition to helping people cope emotionally by helping them to clear their mind and achieve a sense of calmness, journaling can often provide a much needed distraction and can assist in the alleviation of some symptoms.

Writing a book, or a blog, is a great way to help others who are in a similar situation. Having written your feelings from the earliest stages of your diagnosis to the present will enable you to retrace your steps and read the emotions which were connected to that time. You are able to look back on your journey and read how you were able to cope and keep moving forward. Seeing the progress you have made through difficult and frightening times can be inspiring and sharing your story is a wonderful way to make a difference in the lives of others.

I think it is a personal decision as to how you choose to journal. Separate journals for each month are an option but I find most people use one journal, making sure to date each entry and perhaps mark each month separately in the journal. All the entries are part of your personal story so many choose to keep their writing together as parts of the whole.

If you are interested in reading stories that others have shared about their cancer experiences, an online search of the words “cancer blog” will yield many results.

You may also find this article from The New York Times helpful as you pursue publishing your own book.

I'm not a writer but am interested in journaling since recently being diagnosed. I feel I have things I want to say that I don't want to share with people. Could you give me direction as to where I should start? Are there resources that could help me?

Thu, 07 Feb 2013 00:00:00 -0500

Many studies have shown that writing or journaling helps to reduce stress. Writing about your thoughts and feelings, especially after being diagnosed with cancer, is a good way to help process what is happening and often helps to make the experience more manageable.

As you get started, remember not to focus on spelling and grammar – it is the content that is important. Find a place to write where you feel comfortable, a space where you will not be interrupted. Choose the method of writing you prefer whether it is using pen and paper or the computer. Try and write daily, for at least 20 minutes, stopping if you feel tired or overwhelmed. Many people find that setting aside a specific time of day, such as the morning, helps them to collect their thoughts and put them on paper.

There are websites that provide a daily writing prompt or photo – many people find this to be very helpful as they begin journaling. My advice is to sit and write, see what flows out onto your paper. If you are feeling stuck, I find Bernadette Mayer’s list of journal ideas to be a wonderful source of inspiration.

If you feel you that you would like to share your writing with others in a small group, I moderate an online therapeutic writing group at CancerCare called Healing with Words. In this group, the participants are provided with writing prompts as well as longer ongoing writing assignments focused on eight unique topics. Group members post their pieces and connect with one another by sharing their work and commenting on other’s writing works. The goal of the group is for members to learn about writing as a method of coping with a cancer diagnosis and to have a forum to share their creative pieces with others.

My cousin found out that his 4-year-old daughter has brain cancer and it could be terminal. What can I do or say to help him (and his family) through this difficult time?

Thu, 31 Jan 2013 00:00:00 -0500

It can be hard to know what exactly to say or do when a loved one is facing cancer, especially when you are supporting both the parents and a child through a difficult time.

What can I say? Parenting a child with a serious illness can be a painful and isolating experience, so being available to listen, talk, and giving your cousin the opportunity to discuss his feelings and fears, if he wants to, can be helpful. Giving him time to talk about everyday things can be just as helpful too. Your cousin will probably best know the emotional and developmental needs of his daughter, so it’s okay to ask him how best to support her through this. CancerCare’s fact sheet “What Can I Say to a Newly Diagnosed Loved One?” offers additional tips for being supportive to a loved one facing cancer.

What can I do? Ask your cousin what would be most helpful to him during this time. If the family has many practical caregiving needs, they may appreciate help from family and friends. My Cancer Circle™ is an online resource where you can create a community for your cousin’s family and organize support.

Care for yourself. While your cousin is facing difficult times, it is important that you recognize how an illness in the family may be affecting you too. Make sure that you take time to care for yourself, so you can be a stronger source of support for the family.

Get informed. For more information on brain tumors and what to expect during treatment, both the American Brain Tumor Association and National Brain Tumor Society offer invaluable information. The National Children’s Cancer Society is also a good resource for children facing cancer and their families

Do you know of any organization that would help me pay someone who takes care of me? She is not related but takes me to all my appointments, cleans my house, does my shopping and anything that needs done.

Tue, 22 Jan 2013 00:00:00 -0500

Unfortunately the financial impact of caregiving, whether by a relative, friend, or hired help, is under recognized. The type of assistance available for caregivers may depend on where you live, the medical need for services, and your own financial situation. You could contact your state Health and Human Services Department to find out if there is a state specific program to assist with the cost associated with caregiving.

Additionally, CancerCare offers limited financial assistance for cancer-related costs, including home care and transportation for individuals who qualify. You can call us at 800-813-HOPE (4673) and speak with a CancerCare professional oncology social worker.

One of my best friends has had a bone marrow transplant for leukemia and will hopefully be getting out of the hospital soon. I'm looking for a website where people can sign up to sit with her over the next few months and take her to doctor appointments. Do you have any suggestions?

Wed, 09 Jan 2013 00:00:00 -0500

The transition home after a bone marrow transplant can be a time of great readjustment. There may be many outpatient medical visits and it will likely take time for the patient to return to normal levels of activity. It can be helpful during this time to organize a support team to assist with the many practical aspects of returning home. However, friends and family may not be aware of the needs of a loved one recovering from a transplant or know how best to help. Luckily there are resources that can help loved ones organize help and support for an individual recovering from a bone marrow transplant, or any cancer treatment.

My Cancer Circle™ is a free online private support community for caregivers of people facing cancer. At mycancercircle.net you can easily create a community and coordinate volunteer activities that will meet your friend’s needs as she recovers from her bone marrow transplant, such as preparing meals or arranging transportation to medical appointments. By creating a support community you can inform friends of what tasks need to be done and friends can sign up for the activities they can best assist with. My Cancer Circle is also a great way to quickly and easily keep your online support community informed of recovery updates, milestones reached, photos, or other information.

You can also find additional information about recovering from a bone marrow transplant through The National Marrow Donor Program and The Bone Marrow Foundation.

This is a hard time of year for us as my wife has cancer. Would you recommend any books about talking to and doing the best for our kids?

Sat, 29 Dec 2012 00:00:00 -0500

When coping with a cancer diagnosis, families often experience a variety of changes and adjustments during the holidays and other significant events. Discussing and preparing for these changes with your children can open up dialogue, elicit questions and help you to understand what your child is feeling. Although certain rituals or customs may change, it can also be helpful to honor old traditions as a way of maintaining a sense of normalcy for your children. Remember that cancer doesn’t have to be the focus of the holidays, and you have discretion over how much room cancer gets during your celebration.

Books can be helpful tools or supplements to reinforce language and ideas to help children cope with a parent’s cancer diagnosis, but should not replace a conversation. The holidays may be an opportunity to have such discussions, as you are likely joining together as a family to reflect on the past year and to make plans for the year ahead.

When selecting literature to help you talk to your children, consider your child’s age, developmental stage and maturity level. Being honest allows children of any age an important opportunity to ask questions and express how they feel. You may not have all the answers, but you can remind your child that you will always be available for them to ask.

For more information about coping with the holidays and communicating with children about cancer, read CancerCare’s Coping with Cancer During the Holidays and Helping Children When a Family Member Has Cancer, or review the following books to help you navigate these conversations:

How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
Helping your Children Cope with your Cancer by Peter Vandernoot (Hatherleigh Press: 2006)
When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)

My wife is receiving chemotherapy for breast cancer and I know the holidays will be hard. Do you have any suggestions as to what I can do to help her?

Fri, 14 Dec 2012 00:00:00 -0500

The holidays often represent a time of celebration and connecting with loved ones; coping with cancer treatment during this time can be stressful. Your wife may be experiencing side effects that make it hard to focus on the holidays alone, but there are many things that you can do to help her cope with the stress of treatment and to enjoy this holiday season. You can help your wife significantly by paying attention to both her physical and emotional needs, as well as your own.

Talk to your wife about how she wants to spend the holidays. You can also support her as she makes decisions about what activities she can tolerate this year. Managing expectations is an important part of coping with a cancer diagnosis, so consider what traditions she may need to take a pass on this year. Establishing new holiday traditions with close family and friends may allow her to feel more satisfied and supported.

Having an open conversation with her medical team about holiday plans can help provide guidance and support in managing side effects appropriately. They may be able to make dietary suggestions, offer advice on pain management, or make a more flexible treatment schedule if possible. This may help in keeping her focused on the meaning of the holidays rather than uncomfortable side effects.

Also, take good care of yourself this holiday season. As a caregiver, it is important that you think about your needs as well. Talk to friends, go for a walk, or spend alone time with your wife. Considering your own feelings will help to maximize the support you are able to offer your wife.

CancerCare offers publications to help you and your family cope with the holidays during cancer treatment:

You can also listen to CancerCare’s Connect Education Workshops that address coping with cancer during the holidays.

CancerCare’s professional oncology social workers can provide emotional and practical support to further help you and your family find ways of coping. Please call us at 800-813-4673 for support and practical help.

Is mesothelioma a type of lung cancer? I thought so, but my cousin has been diagnosed and he said it isn't.

Fri, 16 Nov 2012 00:00:00 -0500

Mesothelioma is a rare form of cancer which develops in the lining of the chest and lung. It is not lung cancer which is a cancer that normally forms within the lobes and interior structure of the lung and is one of the most prevalent cancers diagnosed today. Being exposed to airborne asbestos particles can increase the risk of mesothelioma. Learn more about mesothelioma through the National Cancer Institute’s Malignant Mesothelioma Treatment (PDQ®).

The Mesothelioma Applied Research Foundation also provides information and patient stories.

If you would like additional information, resources or emotional support, please call 800-813-HOPE (4673) to speak with an oncology social worker at CancerCare.

My husband was diagnosed with a brain tumor earlier this year, and I've noticed a change in his behavior. He can be short-tempered with me and not very nice to our children. I know he is under a lot of stress (he is trying to continue to work while receiving treatment), but I'm worried things will get worse. Is there any connection between his cancer and/or treatment and his behavior?

Tue, 23 Oct 2012 00:00:00 -0400

When a person is diagnosed with a brain tumor, changes in behavior and thinking occur in most patients at some point during their treatment. Changes in behavior may include mild memory loss, mood swings, or intense emotional outbursts. Tumor location, medications (such as chemotherapy and steroids), and stressful life situations can influence behavior. The first step is for you and your husband to discuss these changes. Have you let him know that you feel his behavior has changed? He may or may not be fully aware of these changes.

The second step is to share any changes in personality or behavior with his doctor to rule out a medical cause and make any adjustment to medications if that is needed. The change in his personality may also be due to the stress he is under and a sign that he is struggling emotionally with his diagnosis. A brain tumor diagnosis can bring up many feelings, including anxiety, anger, or sadness. As your husband’s primary caregiver, those feelings may be directed towards you since you are the one he is closest to and trusts. Letting him know how his behavior is affecting you and the family and seeking support can be incredibly helpful. If you are having trouble communicating, couples counseling may help. It may also be helpful for you as his caregiver to have added support at this time. Seeking counseling, joining a support group, talking to a trusted friend or family member, or even writing in a journal can help.

CancerCare provides support services for both patients and caregivers. You can also view all of our brain tumor support services, including an online brain tumor caregiver support group.

Finally, here are some publications that may also be helpful as you care for your husband:

A family member has been diagnosed with a brain tumor and I want to make sure he is going to get the best care possible. How can I find out about the best places that treat brain tumors?

Thu, 18 Oct 2012 00:00:00 -0400

There are many factors to consider when choosing a treatment center, and it’s important to weigh all of your options before deciding which treatment center is right for you or your loved one. While many treatment centers provide excellent care for patients diagnosed with cancer, you will want a center that has experience treating brain tumors. Important questions to ask include:

How many brain tumor patients does the treatment center diagnose and treat per year?
How many tumors has your doctor treated and what are your doctor’s credentials?
Does the treatment center have a specialized neurology department including neuro-oncologists, neurosurgeons, rehabilitation therapists, as well as other specialists?
Does the treatment center have a brain tumor board (a board of specialists who regularly meet to discuss patients, their treatment and their overall health)?
Does the treatment center have the appropriate technology to provide optimal care including imaging equipment?
Does the treatment center participate in clinical trials? Clinical trials are research studies that provide new treatments to patients through medications or other therapies. These studies answer important medical questions related to cancer treatments and also may provide important health benefits to patients participating in the trial.

Rehabilitation services are also an important part of treatment for patients diagnosed with brain tumors. Patients may experience temporary or permanent changes in speech, memory or motor skills as a result of the tumor. Rehabilitation therapy can help tremendously with these side effects. Rehabilitation specialists include speech therapists, physical therapists, and occupational therapists. Questions to ask the treatment center include:

What rehabilitation services are provided?
If services are not provided at the treatment center, what referrals does the center provide?

Comprehensive care is an important factor when choosing a treatment center, as a brain tumor diagnosis can affect many aspects of a patient’s life. The idea behind comprehensive care is that all of the patient’s needs are treated, which can include financial, medical, physical, emotional, and spiritual needs. You may want to ask:

Aside from medical treatment, what other comprehensive services does the treatment center provide?
Does the treatment center provide support services to both patients and caregivers including counseling, support groups and spiritual support?
Are workshops, literature related to care or other learning possibilities available at the treatment center?
Is financial support or referrals for financial assistance available?

For further information on finding a treatment center please contact the following organizations:

National Cancer Institute (NCI) offers a database of NCI-designated cancer treatment centers organized by state.
Society for Neuro-Oncology provides a database of brain tumor centers organized by name of institution.
National Brain Tumor Society maintains a comprehensive website dedicated to helping patients and families diagnosed with brain tumors. Read their fact sheet, Issues to Consider When Choosing a Treatment Center

And finally, these CancerCare publications might be helpful:

I'm 32, and am in treatment for early stage breast cancer. I feel like I'm burdening my friends and husband with my anxiety, but I also need to talk. I'm looking for a therapist, but maybe there are other things I can do to help myself? My husband is supportive, but not very emotional.

Mon, 01 Oct 2012 00:00:00 -0400

Coping with cancer as a young adult is a unique experience. Building a strong support system and having someone to talk to can help address and cope with the emotional stressors you must be feeling. Support can come in many different forms. Many of these services are now easily accessible over the phone and online. CancerCare provides free individual and support group counseling with licensed oncology social workers and can also help connect you to resources within your community. Our supportive services are sensitive to the way a diagnosis of cancer is different when you are young.

These organizations specialize in providing support services to young adults with cancer:

I’m Too Young For This
Planet Cancer
The Ulman Cancer Fund for Young Adults
The Young Survival Coalition (for breast cancer survivors)
Imerman Angels

You may also contact the American Psychosocial Oncology Society Helpline toll-free at 866-276-7443. Their referral program aims to connect cancer patients and their caregivers to local psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress.

In addition to seeking professional support there are many things one can do on their own or at home to help themselves cope. Here are some publications with practical tips that you may find helpful:

Are there programs that can help me feel better about myself? I'm 29, recently finished chemo and radiation and am feeling blah. Anything I can join?

Wed, 19 Sep 2012 00:00:00 -0400

Having cancer in your 20s or 30s can be an overwhelming experience, particularly once treatment is over. Adjusting to the “new normal” can be especially difficult. Connecting with others your age who have also faced cancer and can relate to those days of just feeling “blah,” can be very helpful in normalizing your experience.

There are several organizations that offer support services to help meet the needs of people coping with cancer in their 20s and 30s. These organizations can help you feel connected and secure in the idea that you are NOT alone!

I’m Too Young For This
Planet Cancer
The Ulman Cancer Fund for Young Adults
The Young Survival Coalition (for breast cancer survivors)

The following organizations offer retreats and other camp experiences for young adults with cancer and post treatment survivors:

As a post-treatment survivor, you’ll find helpful information in our booklet, After Treatment Ends: Tools for the Adult Cancer Survivor. All of our post-treatment information and support services can be found on our website. You may also call CancerCare and speak with an oncology social worker who can provide you with support and search for additional resources.

Prior to my husband’s recent diagnosis, we had never heard of of myelofibrosis and don’t really understand what it means. I would like to learn more and know what to expect.

Wed, 15 Aug 2012 00:00:00 -0400

Learning a loved one has myelofibrosis (MF) can feel overwhelming. By reaching out for information and support, you are taking the first step in helping to manage and cope with this diagnosis. While no one knows precisely what causes MF, it is one of a group of disorders referred to as myeloproliferative neoplasms, or MPNs, and is a type of cancer sometimes referred to as a blood cancer or a bone marrow disorder. With myelofibrosis, the bone marrow doesn’t function properly causing a reduction in the amount of normal blood cells. The liver and spleen begin to make blood cells to compensate for this. In turn, this causes the liver and spleen to become enlarged and creates some of the symptoms such as abdominal pain, feeling full, weight loss, fatigue, itching, bone pain, and night sweats that people diagnosed with MF may experience.

It’s difficult to know how MF will affect your loved one, because symptoms and their intensity will vary, but there are several steps you and you husband can take to ensure you get the best care possible and continue to live a rewarding life. It’s important for you and your husband to communicate with your doctor and keep notes about and symptoms and side effects he experiences. Here are some practical suggestions to help guide the conversation:

Create a file for all paperwork related to your husband’s diagnosis and medical appointments. Include copies of lab results and other important documents.
Keep track of symptoms, their side effects and intensity.
Keep a list of all medications he is taking.
Create a list of questions you and he have for the doctor and their answers.
During the appointment, make sure he has the opportunity to ask questions of his provider.
Keep a calendar to record appointments.

Please refer to our fact sheet, “Doctor Can We Talk?” Tips for Communicating with Your Health Care Team for more information.

People coping with serious conditions may feel many strong emotions and it’s common to need extra support to help get through difficult times. Patients and family members can benefit from counseling. CancerCare services include telephone and online support groups for people with cancer and their loved ones. If you’re interested in learning more about our free support, call 800-813-HOPE (4673).

Myelofibrosis is the rarest of the MPN’s and this can make finding information and support more of a challenge. Fortunately, you don’t have to travel that road alone, and there are a number of groups that can assist. Visit the National Organization for Rare Diseases (NORD) or the MPN Research Foundation for more information.

I am currently on my former employer's group insurance policy, and was able to maintain the benefits through COBRA. The policy is about to end and I have been trying to "find" another insurance carrier. I have been denied by a few agencies. Is there any advice you can provide?

Thu, 26 Jul 2012 00:00:00 -0400

Because you were covered by a group insurance policy and have exhausted your COBRA coverage, you are protected by the Health Insurance Portability and Accountability Act, known as HIPAA. This law mandates that people in your situation cannot be denied insurance coverage due to pre-existing conditions. However, there are some stipulations: 1) you must present a certificate of creditable coverage to the insurer, which shows that you are HIPAA eligible; 2) you cannot be eligible for government-subsidized insurance such as Medicare or Medicaid; 3) you must apply for a HIPAA plan within 63 days of losing your coverage.

The Cancer Legal Resource Center of the Disability Rights Legal Center has compiled a list of private insurance companies that offer HIPAA policies:

In many states, HIPAA-eligible individuals can buy insurance through high-risk pools, which are state-run programs that offer individual health insurance policies to residents who do not have access to group coverage and who have been denied individual coverage. The National Association of State Comprehensive Health Insurance Plans provides links to state high-risk pools.

HIPAA policies can be quite expensive. You may want to check to see if you’re eligible for Medicaid or another government-subsidized plan first. The Pre-Existing Condition Insurance Plan, a program instituted through the Affordable Care Act, also offers guaranteed access to coverage for people with pre-existing conditions, and rates are generally lower than those offered through high risk pools or HIPAA policies. However, you have to have been uninsured for at least 6 months in order to apply. To review what public and private insurance options are available in your state, visit the Foundation for Health Coverage Education’s website.

Can you direct me to information about the risk of thyroid cancer due to X-ray exposure? Are there any precautions I should take, say at the dentist?

Tue, 19 Jun 2012 00:00:00 -0400

Having an X-ray can be a regular part of yearly health screening and preventative checkups both in the medical and dental worlds, and it is completely reasonable to consider what precautions should be taken. When you go in to have an X-ray, you encounter several people on your medical team along the way such as radiologists, technicians, nurses, and doctors. The doctor may order the X-ray, the nurse may prepare you for the test, and a technician might set you up with special shields around your neck and abdomen. There may be several opportunities to talk with them about why they are recommending such a scan (taking into account your medical history) and what the risk factors are (such as radiation exposure). Another opportunity to ask questions is when they place the protective shields on you. You may want to ask why they place them on certain areas and not others and what they are specifically shielding.

As for thyroid cancer, it is more likely to develop in people who have been exposed to high doses of radiation, have a history of thyroid cancer in their family, and are 40 years of age or older. But for the majority of people who develop thyroid cancer, the cause is unknown. For more information about thyroid cancer, please visit the National Cancer Institute’s website.

You should speak with your health care team about the possible risks (and precautions that can be taken) when having any procedure, including X-rays. It’s important for you to understand why they are recommending specific procedures and what the risk factors are. X-rays are very different from other scans such as CAT scans and PET scans and your doctor can also talk to you about whether the frequency of these radiology procedures has an effect on your overall radiation exposure risk. Learn more about about radiation exposure and cancer and about different types of imaging tests.

Communication with your health care team is key. How comfortable are you speaking with them about your concerns? Do you feel like you have enough time to ask your questions? Do you feel reassured when they answer your questions? A CancerCare oncology social worker can provide you with support as you consider questions for your health care professionals.

You can read more about dental X-rays and thyroid cancer in a New York Times article. Remember, ask your dentist or health care team about any of your concerns since they know your medical history and are best equipped to answer your questions.

I'm looking to speak with other thyroid cancer patients—can you refer me to groups or organizations?

Mon, 18 Jun 2012 00:00:00 -0400

Connecting with other people who have been through the same emotions, feelings, and treatments that you have had can help you feel less alone and more understood. Here is a list of organizations that provide support groups and/or peer matching programs for people coping with thyroid cancer:

ThyCa: Thyroid Cancer Survivors' Association, Inc. organizes support groups across the United States, monitors 12 online discussion groups, posts personal profiles and journals of survivors, facilitates an email support group, and runs the Person-to-Person Network, a peer matching program.
Support for People with Oral and Head and Neck Cancer (SPOHNC) strives to raise awareness of issues related to head and neck cancer. They offer a National Survivor Volunteer Network, a matching service that pairs volunteers who have gone through diagnosis, treatment, and recovery with patients or family members who are just beginning their journey, or recovering from side effects of cancer or its treatment. They also have local chapters that offer support groups.
Head and Neck Cancer Alliance (formerly the Yul Brynner Head and Neck Foundation) is a foundation that hosts an online forum, organizes support groups, and sponsors Head and Neck Cancer Awareness Week.
Cancer Hope Network provides free, one-on-one support to patients and their families. They match patients or family members with trained volunteers who have undergone and recovered from a similar cancer experience.
Imerman Angels matches and individually pairs a person touched by cancer with someone who has fought and survived the same type of cancer. Cancer caregivers (spouses, parents, children and loved ones) also receive one-on-one connections with other caregivers and survivors. The service is free and helps anyone touched by any type or stage of cancer, at any age, living anywhere in the world.

And CancerCare offers general online, face-to-face, and telephone support groups for people looking to talk about a wide range of cancer experiences. Our groups are facilitated by oncology social workers.

I have heard about triple-negative breast cancer, but I really don't know what it is. Could you explain?

Thu, 10 May 2012 00:00:00 -0400

Triple-negative breast cancer is a subtype of breast cancer. Although breast cancer is often referred to as a single disease, there are many types of breast cancer tumors. In fact, breast cancer can be described as a family of diseases. All breast cancers start in the breast. So, they are alike in some ways, but also can be quite different from each other.

Subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). None of these receptors are found in women with triple-negative breast cancer. In other words, a triple-negative breast cancer diagnosis means that the tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple-negative breast cancer.” Because of its triple-negative status, triple-negative tumors generally do not respond to receptor-targeted treatments. Despite not having a targeted therapy as a treatment option, chemotherapy is an effective treatment. Research shows that triple-negative breast cancer may even respond better to chemotherapy than other types of breast cancer. Surgery and radiation therapy are also usually options.

Are there any recent research findings or treatment developments for triple-negative breast cancer? With a high risk of recurrence, what is the recommended follow-up? What questions should I ask my doctor?

Wed, 09 May 2012 00:00:00 -0400

Triple-negative breast cancer has gained much attention over the past few years, but is still relatively new to researchers. Researchers have discovered that there are many variations of triple-negative breast cancer, and about 15-20% of breast cancer diagnoses in the U.S. are triple negative.

The treatment of triple-negative breast cancer does not vastly differ from other types of breast cancer, and would typically involve the options of surgery, chemotherapy, and radiation. Some of the studies being performed at this time are on already existing chemotherapies; others are on newer medications including PARP inhibitors, angiogenesis drugs, and tyrosine kinase inhibitors.

Because much of triple-negative breast cancer is under investigation, participating in a clinical trial can be helpful to advance research. Depending upon the clinical trial, a patient can join at various stages of treatment and post treatment. The Triple Negative Breast Cancer Foundation has a partnership with EmergingMed that offers a clinical trial matching service in order to make your search faster and easier. You can call them at 877-769-4827 or visit www.emergingmed.com/networks/tnbcf to speak to a clinical trial navigator.

It is very important to discuss a follow-up care plan with your oncology team. During follow-up appointments, you should discuss with your doctor any changes in your body. Typically, a follow-up plan includes physical exams, mammograms, bone health tests, and blood work. Additonal follow-up may involve scans, but that is not as common. A follow-up care plan should best meets your needs and your doctor’s recommendations.

Questions to consider for follow-up visits include:

How often are my follow-up appointments?
Will the frequency of my appointments change over time?
What will happen during these follow-up appointments?
Is there anything I can do to improve my lifestyle that may directly impact my risk of recurrence (e.g., changes in nutrition, exercise, or stress levels)?
What are common longer-term side effects of my cancer treatment, and how long might they last?
Are there any resources to help pay for my medical bills?
When is it medically safe to return to work, and should I perform light-duty tasks when going back?
Where can I join a support group for post-treatment survivors?

CancerCare offers a variety of educational workshops and publications, along with supportive services for post-treatment survivors. We currently offer face-to face, telephone, and online support groups specifically for people who have completed treatment. View all of CancerCare’s post-treatment resources.

I can't afford to pay for my cancer medication. Is there help to pay for them?

Mon, 23 Apr 2012 00:00:00 -0400

The cost of your cancer medication may be a barrier to adherence or taking your pills on schedule. Because of these costs, some patients try to stretch out their supply of pills. Instead of taking them as the doctor prescribed, they take them every other day so that they do not run out of their pills so quickly. If you find yourself thinking of doing this or you are doing this, please speak with your doctor to get financial help. It is very important that you take your pills the way your doctor prescribed them. This way you will get the best results from your treatment.

There are organizations that help cancer patients with the costs of their pills. Co-payment organizations and patient assistance programs help individuals who cannot afford their medications. The following resources may be able to help you:

The website of the Cancer Financial Assistance Coalition (CFAC) has a searchable database of national and regional organizations that provide financial assistance and other services for people with cancer.

NeedyMeds helps patients without prescription coverage by providing information about patient assistance programs that provide prescription medications at no cost.

CancerCare Co-Payment Assistance Foundation (866-552-6729) provides co-payment assistance to patients who meet their guidelines as well as guidance and referrals for additional help.

Patient Access Network (866-316-7263) assists patients who cannot access the treatments they need because of out-of-pocket health care costs like deductibles, co-payments and coinsurance.

Patient Advocate Foundation (800-532-5274) offers a co-payment relief program and seeks to ensure patients’ access to care.

Partnership for Prescription Assistance (888-477-2669) matches patients to programs offering free or low-cost prescription medicines.

And finally, CancerCare’s professional oncology social workers can also refer patients for financial assistance and to organizations that offer free counseling services.

How can I help my 75-year-old mother organize the different pills she takes for her cancer and other numerous health problems?

Mon, 16 Apr 2012 00:00:00 -0400

Health care professionals refer to taking your pills on schedule as adherence. Having more than one illness makes taking pills harder. Having multiple conditions such as cancer, heart disease, or arthritis increases the number of prescription medications. Older adults may forget to take their many medications and may have difficulty opening pill bottles.

Your mother’s health care team, her pharmacist, and you can come up with a practical pill-taking plan. You and your mother might want to schedule time with your mother’s oncologist or the oncology nurse in the doctor’s office to determine:

when the pills should be taken
whether any of the pills interact with each other and should not taken at the same time
which pills should be taken on an empty stomach or with food
how often each pill needs to be taken
what to do if she misses a dose

The health care team can make a schedule for her pill taking, noting the hour of the day each pill should be taken and how best to take each pill. Once you have had this conversation, there are a number of tips to support your mother:

The pharmacist can help you organize your mother’s pills in a pill-sorting box. Some even come with built in alarms.
Encourage your mother to make pill taking part of her daily routine.
Enlist help if your mother needs someone to refill her pill-sorting box and remind her to take her pills.

For more information, CancerCare offers a fact sheet, “The Importance of Taking Your Pills on Schedule” and a podcast, Understanding Adherence: The Importance of Taking Your Pills on Schedule.

CancerCare’s professional oncology social workers are available to provide counseling and practical help—call us at 800-813-HOPE (4673).

I am a veteran, and I was diagnosed with cancer in 2011. I am not working and I need assistance to help me pay for new glasses. I have applied for disability and was denied, but I am appealing the decision. Can you point me to an organizations that may help me?

Thu, 29 Mar 2012 00:00:00 -0400

If you have not already done so, please check with the Veterans Administration (VA). Veterans who meet specific VA criteria have access to vision and hearing exams in addition to free eyeglasses and hearing aids. Veterans with any compensable service-connected disability, former POWs, Purple Heart recipients, and certain housebound veterans are among those who qualify.

If you do not qualify for assistance through the VA, the Non Commissioned Officers Association (NCOA) has an EyeMed Vision Care Program which is a discount program and does have a membership fee.

You might also check with your local Veterans of Foreign Wars and American Legion to ask if they sponsor any eye care programs to help fellow veterans.

Finally, there are community service organizations whose mission is to give back to the community in particular ways.

Lions Clubs International provides financial assistance to individuals for eye care through local clubs. There are Lions Clubs in most localities, and services vary from club to club. Check your telephone book for the telephone number and address of your local organization.
New Eyes for the Needy provides vouchers for the purchase of new prescription eyeglasses. Eligibility guidelines apply.

For other possible resources, please read CancerCare’s fact sheet, Finding Resources in Your Community.

My father, an Air Force veteran, died from cancer three years ago. He was exposed to Agent Orange in Vietnam. Have there been any studies on the health of children of veterans? I have been diagnosed with cancer.

Mon, 19 Mar 2012 00:00:00 -0400

Studies have been conducted, but the focus has been on birth defects in children of veterans who were exposed to Agent Orange. There is a registry for these children maintained by the National Birth Defect Registry. At present, there appears to be no mention of diseases that develop later in life for children of veterans who were exposed. These children are no more than 50 years old and may not have been diagnosed with other diseases yet.

If they have (as in your case), they may not be reported or the individual might not link them to a parent’s exposure. Many veterans are only now beginning to be diagnosed with various diseases that may be related to Agent Orange, so diseases in their adult children will hopefully become a new area of research.

If your father did not file a claim for service-related disability compensation, a family member can file a claim. If a Vietnam veteran dies of a medical condition considered to have resulted from exposure to Agent Orange during military service, certain surviving family members may be eligible for monthly compensation payments through the VA’s dependency and indemnity compensation (DIC) program. Many Veterans Service Organizations offer free assistance to help you present your claim to the VA. You can find a list of Veterans Service Organizations, along with eligibility requirements and procedures for filing a claim, in a guide created by the Vietman Veterans of America.

Additional resources about Agent Orange exposure and cancer include:

The Department of Veterans Affairs website section, Research on Health Effects of Herbicide Exposure
The American Cancer Society’s Agent Orange and Cancer
Cancer.Net’s Veterans and Cancer, Part 1 and Part 2

My father has been diagnosed with cancer and does not have insurance. He is a vet—how do I get him treatment?

Tue, 13 Mar 2012 00:00:00 -0400

Your father may qualify for Veterans Affairs (VA) health care benefits if he served in active military service and was released under any condition other than dishonorable. An application can be submitted regardless of how long it has been since your father’s service and discharge. Call 1-877-222-VETS (8387) or visit www.va.gov/healthbenefits for more information and to begin the application process.

If he is a Vietnam era veteran who served in Vietnam or specific areas of Korea and Thailand, he may be eligible for compensation under the “Presumptive Service-connected Agent Orange Disability Compensation.”

Other options you can explore include state and federal health care programs. Eligibility for health care is based on age, income, or pre-existing disability. To see what programs are available in your state, visit The Foundation for Health Coverage Education.

If he is ineligible for public programs, high-risk health insurance pools allow patients who have been denied coverage due to pre-existing conditions to buy a policy. The cost may be high and there may be a waiting list, but it’s cheaper than being uninsured and paying out of pocket. The National Association of State Comprehensive Insurance Plans lists high-risk pools by state.

Hospitals and clinics may offer charity care and sliding scale programs (fees based on his income). Some hospitals are required to see patients who are uninsured. Contact your local department of public health, social services, or business office of your hospital of choice for more information.

The Patient Advocate Foundation provides advice and guidance on insurance related issues.

If your father registers with the VA, they have a number of services designed specifically to support the family caregivers.

Finally, CancerCare caregiver services are free of charge and available to anyone affected by the cancer diagnosis.

I'm having several lymph nodes removed from under the arm—what can I expect?

Fri, 02 Mar 2012 00:00:00 -0500

Lymph nodes are small, bean-shaped masses of tissue that are located in clusters throughout the body, including in the armpit. Lymph nodes play a crucial role in helping to fight infection; they filter and trap bacteria, viruses, and other unwanted substances in the body, so that special white blood cells (called lymphocytes) can then destroy them.

When treating cancer, doctors sometimes choose to remove and biopsy nearby lymph nodes to learn whether any of the nodes contain cancer cells. This information helps determine whether the cancer has spread to other parts of the body, a process known as “staging.” This information also helps the health care team decide on an appropriate and tailored treatment plan.

As with any surgical procedure, there might be side effects. You may sustain some degree of nerve damage during the procedure, resulting in tingling, numbness, or weakness in your arm. These neuropathy symptoms can be mild or more severe, depending on the extent of nerve involvement. You may experience swelling in the arm due to a build-up of lymph fluid that is no longer draining effectively through the remaining lymph nodes; this condition is called lymphedema. You may experience a temporary inflammation of blood vessels in your armpit as well as a higher potential for blood clotting and infection at the biopsy site.

If your health care team has recommended this procedure for you, it is likely because they feel that the benefits outweigh any of these potential risks. Nevertheless, it is always a good idea to have a frank discussion with your surgeon about possible side effects and any preventive measures you can take to lower your risk of experiencing them.

CancerCare offers resources about lymphedema and neuropathy.

For more information about lymphedema, please visit The National Lymphedema Network.

To learn more about lymph node removal surgery, please visit The National Cancer Institute.

Any tips for dealing with neuropathy in cold weather?

Thu, 16 Feb 2012 00:00:00 -0500

Cold weather poses special challenges for people affected by neuropathy. Prolonged exposure to the cold causes the body to slow blood circulation to the hands and feet in an effort to preserve the body’s core temperature. The reduced blood flow can intensify neuropathy symptoms and potentially cause further damage to already affected peripheral nerves. This is of special concern to those who experience their neuropathy pain as a numbness or tingling sensation. Their ability to measure the effects of the cold is compromised since they already experience those physical warning signals that would otherwise indicate a need to get to warmer conditions.

Tips to lessen the pain and lower your risk of further nerve damage:

Wear warm, dry clothing in cold weather.
Protect your hands and feet by wearing thick socks, thick mittens or gloves.
Take intermittent breaks from the cold to reduce your exposure to extreme temperatures.
Limit or avoid caffeine before an outing as it can temporarily cause blood vessels to narrow.
Do not smoke as cigarette smoke can slow circulation.
Limit alcohol use since excessive consumption can lead to vitamin deficiency which can, in turn, damage peripheral nerves.
Incorporate exercise into your routine to improve overall circulation.
Explore comfort measures like massage or use of flexible splints for support.

The information I’ve shared above is meant to be helpful and educational, but is not a substitute for medical advice. Please be sure to consult with your health care team for personalized advice and guidance.

For more information about neuropathy, please view all CancerCare’s neuropathy resources.

I stopped cancer treatment some time ago and am still struggling with neuropathy. How long does neuropathy usually last? What treatments might I pursue?

Sun, 12 Feb 2012 00:00:00 -0500

Many cancer survivors experience post-treatment neuropathy. For some, the symptoms may lessen gradually over a period of weeks or months. For others, the symptoms may persist or even become chronic. It is difficult to provide a typical timeline of symptoms, because there is so much variation from case to case. Many factors impact the degree to which someone experiences neuropathy including:

the type of chemotherapy drug or combination of drugs used
the chemotherapy dosage
the overall length of the treatment regimen.

In addition, each person responds differently to chemotherapy.

It’s important to seek out a consultation with an experienced neurologist if you are experiencing neuropathy. Fortunately, there are a number of treatments available to help manage the chronic pain and discomfort caused by neuropathy. For mild symptoms, over-the-counter pain relievers like Tylenol or Motrin may be adequate. For more severe symptoms, your doctor may prescribe stronger pain medication; anti-convulsant medication to help calm the nerves and central nervous system; or antidepressants to decrease the chemicals in the brain that transmit pain signals. Physical therapy may improve balance and strength while occupational therapy may improve the fine motor skills used in tasks like writing or buttoning a shirt. Alternative treatments such as biofeedback, acupuncture, or transcutaneous nerve stimulation (TENS) are also available. Your health care team can work with you to determine the best treatment or combination of treatments to address your situation.

Since other health issues may cause or further aggravate nerve damage, it is important to consult regularly with your medical team. Other underlying medical conditions can contribute to your symptoms. Diabetes, autoimmune disorders, kidney disease, or physical trauma are just a few of the other common causes of neuropathy. Your health care team should conduct a thorough assessment of your risk to determine whether other kinds of interventions would be helpful for you.

It’s also a good idea to keep track of your neuropathy symptoms, so that you can provide detailed reports about your symptoms to your health care team.

For more information about neuropathy, please visit CancerCare’s neuropathy resources or The Neuropathy Association’s website. The Neuropathy Association also offers a list of U.S. neuropathy medical centers.

I've heard recently about this condition - what is neuropathy?

Fri, 10 Feb 2012 00:00:00 -0500

Neuropathy, also called peripheral neuropathy, is a term that describes the special kind of pain and discomfort caused by nerve damage. It is typically characterized by a feeling of weakness, numbness, tingling, or burning in the hands and feet. It can result from a number of different medical issues including infection, diabetes, kidney disease, and traumatic injury. Peripheral neuropathy can also be a common side effect of certain chemotherapy treatments, and can develop after surgery (especially for breast or lung cancer).

If you have concerns that you or a loved may be experiencing symptoms of neuropathy, be sure to discuss the issue with your health care team as there are treatments available to help control the symptoms. A typical treatment regimen may include over-the-counter or prescription medications. Your doctors can work with you to find the best treatment or combination of treatments to manage your discomfort.

For additional information, CancerCare offers many resources about neuropathy.

You can also find information through The Neuropathy Association.

I'm a third-grade teacher and one of my student's mothers recently died of cancer. I'd like to know how to help her, and how to help the rest of my class support her.

Mon, 30 Jan 2012 00:00:00 -0500

When a child loses a parent, it is natural for those around them to want to take away the pain or say something that will fix it. It is important to remember that you do not need to have all the answers. What your student needs most is to know there is someone there to listen and support her. For the most part, you will want to continue to provide structure and guidance in the same way you did before her mother’s death. Children, even those who are grieving, do best when adhering to their routine and what is familiar to them.

If you have the chance to speak with her privately, you can let her know that you are available if she ever wants to talk. This does not mean you need to take on the responsibilities of a counselor; rather you can be the starting point for her to get additional support. If your school has a counselor, you can help by introducing your student to him/her. Let your student know that if there is ever a time where she feels it is too difficult to be in class she can signal to you and leave to go to the counselor’s office.

As a class, many of the students may have some experience with death, maybe the death of a pet or a grandparent. Most will not have experienced the loss of a parent. The children in your class can be supportive of your student in very concrete ways by making a sympathy card, putting a care package together, and doing other kind gestures.

The following are resources to help the school staff as well as the child’s father:

My daughter passed away from cancer about 6 months ago and I'm concerned about my 2 grandchildren, ages 7 and 4. Could you give me advice about how I might be able to help them?

Fri, 13 Jan 2012 00:00:00 -0500

As a parent who recently lost a child, it can be very difficult to deal with your own grief while also trying to support other family members, including children. How you support your grandchildren may vary depending on their age and how they are grieving.

Your grandchildren are most likely grieving differently than the adults in your family. You may find that they can be crying or sad one moment and then asking to play a few moments later. This is a normal reaction for children and can be helpful in their grieving. Especially with younger children, play is a way for them to express difficult thoughts or feelings that might not otherwise be shared.

You may also find the children continue to ask questions about their mother’s death or if she will be coming back. For children under the age of 7 it is difficult to understand that death is permanent, so they may continue to ask about it. While these questions can feel uncomfortable to answer, it is important to continue to address these questions in a concrete way. Saying that she is “asleep” or “passed away” may sound comforting to adults, but can easily confuse children.

Continue to love and support your grandchildren as you have been doing and take the time to listen to their questions and concerns. It is important for them to know that there are adults they can turn to.

Some families find it helpful to attend bereavement groups for children that have lost a loved one. These groups usually use play and creating art as a way to help children cope with their grief, while meeting other children who have also experienced the death of a loved one.

Here are a few additional resources that may be helpful:

If you would like some additional support, please do not hesitate to call our Hopeline at 800-813-4673 and speak with an oncology social worker who can provide support, resources, and guidance.

I am a 4 year survivor of prostate cancer, my sister just lost her 11-month ordeal with pancreatic cancer. She was told she had cancer almost 20 years after losing our mother, so holidays are rough for me and the rest of the family. Any thoughts as to how to handle this?

Fri, 16 Dec 2011 00:00:00 -0500

I am very sorry for the recent loss of your sister and the trying times that you and your family now face, especially as the holidays approach. Likely, there is a “legacy of loss” that has become part of your family’s experience during this time of year, which may add to the grief you are now experiencing. The struggle to try to maintain some degree of normalcy during a very confusing and difficult time is profound, and I’m glad you are reaching out for guidance.

I want to assure you that it is possible to get through this time in a way that feels “right” for you individually and also as a family. There are no rules here; listening to yourselves and acknowledging your limits will be very important as you approach the weeks ahead. Consider each commitment you make and ask yourself honestly, “Is this something I can realistically take on right now?” You are carrying a heavy load and taking time to pay attention to your feelings will help you to make choices that will honor your grief and spend time together as a family.

This time can also be an opportunity for you to come together as a family in very meaningful ways. Perhaps you will decide to avoid the holiday pressures, and instead simply spend your time in each other’s company. It will be important to open up a dialogue with your family about their feelings, thoughts, and ideas as to how they would like to spend the holidays while remembering your mother and sister. Be honest and gentle with yourselves and with each other—this will help to facilitate communication and understanding and find the right balance.

For more information that might be helpful, please view Memorial Sloan Kettering Cancer Center’s video, Coping With Grief During the Holidays.

Please know that you are not alone and if you or any of your family members would like some additional support, please call our Hopeline at 800-813-4673. Our Hopeline is answered by CancerCare professional oncology social workers who are here to help and guide you. I hope you and your family will find some comfort during this difficult time.

I lost my only daughter this past Jan. 2011—she was only 38 years old and left 3 young children. They do not live close to me. Christmas is coming up and I don't know how to get through all the joy of others. I do not want to be a downer to my other family members. I am married, but my husband is going through his own grief. Suggestions?

Fri, 16 Dec 2011 00:00:00 -0500

I am so very sorry for the loss of your only daughter, and at such a young age. Your grief, especially as you face the one year anniversary of your daughter’s death, is understandably intense right now and needs proper attention and care.

You are not a “downer”—you are experiencing grief and that is real. This is a time for you to do whatever you can to take care of yourself. If you feel like crying, pardon yourself, and go have a good cry. Take the time and space you need to feel whatever comes your way and as much you are able, protect yourself from those who might place unrealistic expectations on you or judge you. Trying to force yourself to be happy might cause you additional stress, so try not to do anything you are not comfortable with; remember to pay attention to your feelings and internal reactions, and be gentle with yourself right now.

In order to take good care of yourself, consider identifying trusted friends and family to share your concerns with. If there is anyone you can confide in, call upon them to become your “shepherd” in helping to guide and support you during this difficult time. You might also come up with a “script” or something that you can say that feels authentic when people ask how you are doing, such as “this is a difficult time, but thank you for asking.” Making room for your grief during the holiday season may help you to feel less pressure, and hopefully allow for moments of peace, solace, or even joy that may come your way as you remember your daughter and spend time with your loved ones.

For additional guidance, please read our fact sheets, “Grief and Healing With the Loss of a Loved One” and “Helping Children Who Have Lost a Loved One.”

If you would like some additional support, please do not hesitate to call our Hopeline at 800-813-4673. You can speak with a CancerCare oncology social worker who can provide support, guidance, and resources.

My husband, his mother, and her brother died of pancreatic cancer. My daughter has had breast cancer. I also have two sons, one with Crohn's disease and one with type 2 diabetes. What protocol should we be following?

Thu, 10 Nov 2011 00:00:00 -0500

Pancreatic cancer is often difficult to diagnose. That’s because of where it is located in the body (right in the middle of the body) and the way it often presents (generalized pain either in the belly or the back, right or left side). There is no distinct cause for pancreatic cause but there are findings that certain risk factors increase the likelihood of the disease.

According to the Pancreatic Cancer Action Network (PanCan) strong family history is one of the risk factors for pancreatic cancer as well as a family history of breast cancer and diabetes. Make sure you are detailed and clear with your health care providers when giving your family health history and ask about getting a blood test called CA19-9 as a baseline. When the test is trending upwards, it might mean that there is some pancreatic cancer activity in the body. You might also consider pursuing genetic testing.

Again, it is important for you and your family members to discuss your specific family history (including all illnesses) with your health care providers so that you will know what protocol is best to follow.

Learn more about The Genetics of Pancreatic Cancer from Cancer.Net.

My mom was recently diagnosed with breast cancer and she has to pay almost $500 in co-pays for her medicine. How can we get help?

Tue, 25 Oct 2011 00:00:00 -0400

Unfortunately, having insurance doesn’t guarantee that patients will be able to afford their treatment. Even with insurance coverage, out-of-pocket expenses such as co-pays for medications can add up very quickly. Your mother is not alone in struggling with these costs.

Sometimes, cancer drug manufacturers will offer patient assistance programs to financially assist people like your mother who are struggling. To find out if such a program exists for your mother, please contact the Partnership for Prescription Assistance at 1-888-477-2669.

In addition, there are organizations that offer co-pay relief for chemotherapy and cancer medications. Funding can vary and depends on the cancer type, so call before applying to confirm availability. One such program is the Patient Advocate Foundation Co-Pay Relief Program, which provides direct financial support for co-pays to insured patients who financially and medically qualify. For more information call 1-866-512-3861 or download an application. You may also try contacting the Chronic Disease Fund at 1-877-968-7233.

And finally, you can search for financial help through a website created by the Cancer Financial Assistance Coalition.

I fear I have breast cancer...I have no insurance and lost my job. My symptoms have become too huge to ignore. What can I do?

Wed, 19 Oct 2011 00:00:00 -0400

I am sorry to hear about all that you are dealing with—this must be a stressful time full of uncertainty. It is certainly important to be aware of changes in your breasts and to seek medical attention when you notice unusual symptoms that persist for a period of time. But keep in mind, too, that 80% of breast lumps are not cancerous. For instance, breast cysts, fibroadenomas, and infections are all considered to be benign, or not related to cancer.

That said, you should contact the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), to locate a free screening program. Medicaid coverage is available through the program to women who have been screened and diagnosed with cancer. For more information go to the NBCCEDP website or call 1-888-842-6355.

The thought of having cancer can be upsetting and overwhelming. Are there people in your life to whom you can turn for emotional support? You may find it comforting to bring a trusted loved one along to appointments. Not only will you have a hand to hold, but you’ll have an extra set of eyes and ears to help you take in information. I also welcome you to call CancerCare and speak with one of our professional oncology social workers at 1-800-813-HOPE (4673). Oncology social workers have professional training to counsel people coping with cancer and help them access practical assistance. They are available to help you manage emotions such as anxiety and sadness, find reliable information, and locate resources in your community. Read more about CancerCare’s free, nationally-available services.

I was diagnosed with breast cancer in late 2010. I received 6 rounds of chemotherapy, and I still experience severe knee pain. Is this pain related to the chemotherapy and when will it end?

Tue, 18 Oct 2011 00:00:00 -0400

It is not uncommon for people who have undergone chemotherapy and other cancer treatments to experience long-term side effects. For example, certain breast cancer treatments such as chemotherapy and hormonal treatments may contribute to bone loss, which could cause knee pain (view our bone health resources). Your body’s reaction to cancer treatment depends on factors such as treatment length, dosage prescribed, and your personal health history. Most side effects are temporary, but some can last for some time after treatment is over.

It is important to discuss your symptoms with your medical team so you can find some relief. Are they aware of your knee pain? I would strongly encourage you to tell your doctor about your concerns if you haven’t already. He or she is in the best position to investigate whether your pain is chemo-related. In the event that your doctor is not accessible, your nurses and oncology social workers are great resources. Nurses have a wide range of skills and are usually in charge of implementing the plan of care your doctor has set up for you. They are trained to administer medication, monitor side effects, and educate you on the medications you are receiving. Oncology social workers are professionally trained to counsel people affected by cancer and help them access practical assistance. They can also act as a liaison between you and members of your medical team. CancerCare offers a free podcast with tips to help you plan for your post-treatment medical appointments, Communicating With Your Health Care Team After Treatment: Making the Most of Your Visit.

Finally, many people find it helpful to keep a record of side effects to bring to your next appointment. You can create a daily journal that details information such as when the pain occurred and for how long, how strong was the discomfort/pain using a scale of 1-10, and how the side effect impacts your daily activities. Learn more about our resources on coping with pain.

I am looking to connect with survivors of cervical and/or vaginal cancers who have found success in managing long-term side effects of pelvic radiation. I have been offered little in terms of treatment of after-effects and am wondering if anyone has found relief.

Wed, 28 Sep 2011 00:00:00 -0400

There many ways to connect with others who are experiencing long-term side effects as a result of their cancer treatment. For many women who undergo treatment for gynecological cancers, there can be varying side effects that are short term or longer term. Having the opportunity to talk with others and share your experience may help you better cope with your side effects and learn new ways to manage them.

CancerCare offers many valuable resources to help survivors cope with post-treatment concerns. Learn about our post-treatment survivorship resources which include support groups, educational workshops, and publications. Joining a support group is a great way to share personal experiences, ease the feeling of isolation, explore new ideas, and receive helpful feedback from others.

The National Cervical Cancer Coalition has an online support community which is peer-led. Additionally, EyesonthePrize.org provides support and information for women coping with gynecological cancers.

As always, you can speak with a CancerCare oncology social worker about your concerns.

I've been diagnosed with endometrial cancer and will have a hysterectomy. I'm worried about the physical and emotional toll it might take. Is there any way I can prepare myself?

Wed, 14 Sep 2011 00:00:00 -0400

Taking time to prepare yourself before your treatment can help reduce anxiety. One of the ways in which planning can be beneficial is by talking with your doctor about what to expect before and after a hysterectomy, both physically and emotionally. Our fact sheet, “Doctor Can We Talk? Tips for Communicating With Your Health Care Team, might be helpful as it provides tips on how to make the most out of your visit.

It is equally important to acknowledge you may have different feelings before and after your surgery. In order to explore those feelings, you may want to consider options for building in emotional support. Many women find comfort in support groups by sharing their feelings and learning how others cope with challenges and common fears. Indivudal counseling might also be helpful. You can learn more about CancerCare support groups or speak with an oncology social worker.

Other resources include:

HysterSisters offers information, support, and resources for hysterectomy-related needs.
Eyesontheprize.org provides FAQs answered by women who have been through a hysterectomy.

Additionally, some people find various activities help ease their anxiety such as journaling, meditating, exercise, and exploring nature. If there are activities in your life that bring you a sense of calm, it is particularly important during this time to seek out and engage in those activities.

I finished treatment and would like information on fertility issues and cancer survivors. Can you help me?

Fri, 02 Sep 2011 00:00:00 -0400

Unfortunately, one potential effect of cancer and cancer treatment is the loss of fertility in both men and women. Depending on cancer type and treatment methods, your age, and other factors, your fertility may be compromised on a temporary or permanent basis. To determine this likelihood and possible solutions, it is important that you talk to your oncologist and a fertility specialist. The American Cancer Society has a comprehensive document on the main causes and options for cancer-related infertility. For women, causes include:

damage to your eggs caused by certain kinds of chemotherapy
damage to your ovaries caused by radiation
removal of the uterus (hysterectomy) or ovaries (oophorectomy)
hormonal treatments

If you still have a uterus and ovaries, you may still be able to get pregnant. Some medical professionals recommend waiting 6 months before trying, to avoid fertilization of damaged eggs. A doctor specializing in high-risk obstetrics can check that your ovaries are still functioning and that your heart and lungs are strong enough to withstand pregnancy. If you were not able to freeze embryos (cryopreservation) before beginning cancer treatment but you still have your uterus, you may consider:

getting implanted with donor eggs through IVF (in-vitro fertilization)
getting implanted with a donor embryo through IVF
adoption

For men, infertility may be caused by:

damage to your sperm cells caused by chemotherapy
damage to sperm cells caused by radiation
surgery to remove your testicles or prostate
hormonal therapies

Some men recover their ability to produce sperm after cancer treatment (maybe a year or later). If you did not freeze your sperm before treatment but you can still produce sperm, you may consider:

getting your semen analyzed to determine the level of DNA damage to your sperm
adoption

LIVESTRONG has a program called Fertile Hope, which provides information on fertility options at all stages of cancer treatment to help you make an informed decision based on your individual needs. Fertile Hope can also provide financial assistance to help you preserve your fertility before cancer treatment begins. You can also search a comprehensive guide of agencies that deal with the financial, practical, legal, and emotional aspects of infertility.

My Oncofertility has a helpful chart that details options for fertility both before and after cancer treatment, as well as comparisons of cost, time, and success rates of the different procedures.

Because of the practical, financial, and emotional toll of fertitlity issues, please consider joining a support community or seeking counseling. CancerCare has face-to-face, telephone, and online support to help you cope with this stress and other survivorship-related concerns.

I'm in remission after having chemotherapy and radiation for small cell lung cancer. I've recently started having a shortness of breath when I'm at rest (doesn't seem to happen at work). Is there anything I can do?

Fri, 19 Aug 2011 00:00:00 -0400

The shortness of breath, or dyspnea, you are experiencing can be uncomfortable and frightening. The more you struggle for air, the harder your lungs work to get oxygen, and the more distressed you feel. It is extremely important to consult a medical professional to find out what might be setting this cycle in motion. Possible causes could be:

a side effect of chemotherapy or radiation (which may reduce lung capacity)
anemia, meaning your lungs don’t have enough red blood cells to deliver oxygen throughout your body
a non-cancer lung condition, like asthma, COPD, or an allergy
anxiety caused by fears of recurrence, the lasting emotional effects of having had cancer, or other types of stress

Contact the American Lung Association (1-800-LUNGUSA) for information on other possible causes of dyspnea. Depending on its source, a doctor may prescribe a steroidal or anti-anxiety medication, supplements, oxygen, or special exercises. The Lung Cancer Alliance has a very helpful video demonstration of breathing techniques to relieve dyspnea. Progressive relaxation, meditation, and guided imagery can all help reduce stress and anxiety. CancerCare has several Connect Education Workshops that address stress management in cancer survivors including Fear of Recurrence and Late Effects: Living with Uncertainty and Managing the Stress of Survivorship.

To prepare for your doctor’s appointment, keep a record of your breathing problems, with these questions in mind:

When do you experience shortness of breath?
When does it feel worst?
How long does each episode last?
What is going on around you before, during, and after each episode?
Does anything make it feel better?

Take your record with you to your appointment. It is very important that a medical professional review your symptoms, especially if you’re also feeling faint and dizzy, if your heart is pounding, or if it’s difficult to breathe even at rest.

CancerCare has information on creating a survivorship care plan that can be used to personalize your post-treatment needs and communicate them to your health care provider.

Don’t be afraid to advocate for yourself so that your medical, emotional, and practical needs are addressed, and your quality of life is maximized.

How can I find an exercise program that is adjusted for physical limitations I have due to having had cancer? I can't walk like I used to, because I have nerve damage in one leg and I tire easily. I thought yoga or Tai Chi, but I can't do the normal sets. Any ideas what kind of exercise I can do or where I can find modified plans?

Thu, 11 Aug 2011 00:00:00 -0400

Your question identifies one of the most important aspects of cancer survivorship – continued self-care. Exercise improves post-treatment fitness and strengthens your ability, in both mind and body, to cope with the after-effects of cancer.

The first step in starting any exercise program is to consult a doctor, either your oncologist or general practitioner. Ask him/her for a referral to an occupational or physical therapist, who can help you customize an exercise routine based on your age, present fitness level, and any limitations caused by cancer or its treatment. This can help increase your flexibility and bone and muscle strength, which are crucial to improving balance and preventing falls. Some techniques can even be performed sitting or standing. For more information, see our booklet, Caring for Your Bones When You Have Cancer.

Health professionals can also help you find exercise programs in your community, such as yoga, Tai Chi, qigong, and other gentle movement classes that are tailored to cancer survivors. Such classes may also be found at your local YMCA, senior center, or Cancer Support Community. Mind-body techniques (including deep breathing and relaxation exercises) will improve your focus and energy level. Learn more by reading our fact sheet, “Relaxation Techniques and Mind/Body Practices.”

You may also want to see a neurologist to treat the nerve damage, or neuropathy, that is limiting your movement. A neurologist may prescribe medications, acupuncture, or relaxation exercises to relieve your pain and discomfort.

Another way to improve your ability to exercise is to consult a nutritionist or registered dietician: finding a diet tailored to your specific needs can help increase your energy and rebuild your muscles and bones. The American Cancer Society has comprehensive nutrition information for before, during, and after cancer treatment.

Even if you are fatigued and tire easily, start slow. Any exercise is better than none. Consult the American Society of Clinical Oncology for information on how to practice this. Instead of walking for an hour, walk for 5-10 minutes several times a day. Give yourself credit for any exercise you do, and reward yourself when you are able to do more. Remember to celebrate each small success.

My pain seems to be increasing. How do I tell my doctor without sounding like a "seeker"?

Tue, 26 Jul 2011 00:00:00 -0400

Fear of becoming addicted or becoming a “seeker” is common among people who are prescribed medications for cancer pain. Unfortunately, this fear can keep some patients from talking with their doctor about the pain they are experiencing. It can also prevent them from following their doctor’s orders about when and how often to take their medications. Some people may even skip some of their doses because they are afraid of “getting hooked.” However, if you feel that your pain is increasing, it is important that you consult with your medical team. Keep in mind that pain is what the person says it is. You are the expert when it comes to your own pain. A simple change in the dosage or frequency of your medication may be all that is necessary to ease your pain.

Although a possibility exists that you may become physically dependent on your medication, which is a normal response to taking a pain medication over a period of time, this nonetheless is not a sign of an addiction. Sometimes our bodies can become used to the medicines that we are taking. This is described as building up a “tolerance” to medications. It means that the pain medications that used to work may no longer be working to help relieve your pain. It’s important to talk with your doctor about any concerns or fears you may have surrounding this. Don’t assume that your doctor is aware of the level of pain you are experiencing. Doctors have to rely on their patients to inform them whether or not the medications are working. Keeping your doctor informed will also help ensure that your pain medications are being used safely and effectively. If you feel that your doctor is not addressing your pain to your satisfaction, you might consider asking him/her for a referral to a pain clinic or pain specialist.

My husband has advanced cancer, and he has severe pain in his lower back and legs. What does that mean?

Thu, 07 Jul 2011 00:00:00 -0400

Pain is a message your body sends saying that it needs help. Let me say that although your husband may be experiencing increased pain, this does not necessarily indicate that his cancer is becoming worse. It is very important to communicate with his medical team so they can explore this further and take appropriate action to address his pain. There are various pain medications that can offer relief. Pain management works best and is most effective when there is a team effort. The more accurately you both can describe the pain to his doctor, the better his doctor will be able to help him. Rating pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and communicating levels of pain.

To make sure he receives effective pain management:

Tell his doctor immediately about any pain he is experiencing. NEVER allow pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
Write down any questions you may have about his pain and how to manage it BEFORE you visit his doctor. And, be sure to write down the answers his doctor gives.
Accompany him to his appointment. Having another person there who can give him emotional support, ask questions, and remember information can help him better address and manage his pain.
Be specific and describe his pain in detail. Don’t assume his doctor knows how he feels. Make sure to describe in detail what his pain feels like, when it is at its worst, and when it appears to ease up, if it does.
Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects his quality of life.

Remember, pain is what the person says it is. Your husband is the expert of his own pain and his medical team is there to work with you both.

You’ll find additional information in our publications: