Today should be a happy day. Today my husband and I are attending the wedding of one of my closest friends’ sons. It will likely be a wonderful party with lots of good food, wine, and dancing. But for me, it’s also the first time I’m attending a fancy social event following my double mastectomy. It’s the first time I’m getting dressed up in big girl clothes with high heels to head out for a night on the town. Sounds like fun, doesn’t it?

Through the months leading up to the wedding, I was excited to have something to look forward to. After all, for close to 2 months, I was restricted by my surgery and the downtime for healing. What I didn’t realize is that this was one of the first times that people — not close friends, but other people — were going to see me after my surgery.

One thing I know for certain is that things have changed as a result of my surgery. Let me explain. Before the double mastectomy and before anything ever happened with my breasts, people looked into my eyes when they greeted me. Since then, friends and acquaintances have looked down at my breasts first and then looked up to meet my eyes. Some may think I am being overly sensitive or paranoid, but I’m not. Trust me, as a small B cup before surgery, my breasts weren’t a source of interest to anyone. But now they are, and that makes me feel uncomfortable and different than before. I even notice close friends paying extra attention to my chest at times. Most have embraced me and been elated and encouraged by my strength during this journey. But I wouldn’t be totally honest if I didn’t say, in some cases, that when some people greeted me, it seemed like they felt sorry for me. And this created anxiety.

As we sat on the side of the road, I told Dan I didn’t want to go to the party. But this clearly wasn’t an option since it would be terribly disappointing to my friend and to me as well. So after a brief but intense discussion, off we went. We arrived at the venue, the valet opened my car door, and out I went on shaky legs into the hall. I grabbed a glass of champagne, which calmed me down somewhat.

The apprehension I was feeling totally knocked me off balance. I am not a socially anxious person; I LOVE a good party. I tried to look at myself introspectively to see what was happening and how I could soldier through these feelings. I asked myself, “What are you afraid of? Why are you worried about the people and what they might think when they see you?” Frankly, the only people I really knew were the immediate family of the groom. The others were merely acquaintances at best. I reasoned with myself, saying things like, “You are a guest at this party. You’re not the mother of the groom. All eyes are not going to be on you!” Still, I was unsettled, but with a lot of positive self-talk and deep breathing, I made it through the ceremony and headed into the cocktail hour.

That’s when I realized that I needed to identify the people I was afraid to see, visualize the encounter in my mind (sort of role-play it), and map out how I would react. After all, it’s really up to me how I choose to react. So that’s what I did during the cocktail hour. I identified the people I was worried about seeing at the reception. I visualized their sideways glances downward when they saw me — and what I thought they might be thinking as they looked at me. I decided that they were really inconsequential and I should not care what they did or thought. More positive self-talk and visualization, and it was time to head into the reception.

Exactly what I feared would happen did happen. We arrived at our assigned table and sure enough, I was greeted by these people in exactly the way I thought I would be. They looked down at my chest, which gave me that vulnerable “I am different” feeling, and then they looked up. But I got through it, because I’d anticipated what would happen beforehand. It happened and it was over.

But the story doesn’t end here. While making my way across the room to congratulate my friend on her son’s wedding, a woman — a total stranger — walked up to me and said, “I just have to tell you, I’m on the board of directors for the top fashion design school in New York, and I must say that by far you are the best dressed woman here and you carry the look so well.” You can only imagine how fast my jaw dropped to the ground. Whoa, I did not see that one coming! My reaction: I briefly told her the background of the earlier story, hugged her, and thanked her for being there for me that night.

Beyond that, we danced, we ate, and we drank at the reception, but most importantly, we celebrated a beautiful milestone with our dear friends.

After the wedding, I did experience similar social anxiety three more times at other events, but I knew that there was a chance that might happen so I was better prepared for the feelings. As a result, the anxiety was not as hard to manage.

As a footnote, I recently came across a photo of my husband and me (at the beginning of this blog) at the wedding, which coincidentally occurred just about a year ago. The photo was taken after I had settled down later in the evening, after all of the anticipatory anxiety. I’m not one to compliment myself often, but I must admit that I looked pretty good that night. I’m very happy I did not give in to my initial impulse to leave the party!

In this blog, we’ll address some of the questions that our visitors have been asking.

What is a biosimilar?

A biosimilar is a new type of biologic drug. A biologic drug or product is made from living things, such as antibodies or proteins.

Herceptin (chemical name: trastuzumab) and Avastin (chemical name: bevacizumab) are two examples of biologic drugs used to treat breast cancer. Both Herceptin and Avastin are created from monoclonal antibodies, a type of protein made in the lab that can bind to substances in the body, including cancer cells.

Each monoclonal antibody is made so that it binds to mainly one substance. Herceptin binds to the HER2-receptor proteins in cancer cells. Avastin binds to the vascular endothelial growth factor (VEGF) protein and blocks it from helping the cancer cell grow new blood vessels. After the Herceptin or Avastin binds to its protein, it helps stop the cancer cell from growing.

Because they’re made from living organisms, biologic drugs are much more complex to make than drugs that are made from a mixture of chemicals, such as acetaminophen (brand name: Tylenol) or pseudoephedrine (brand name: Sudafed). The structure of chemical drugs can be easily analyzed, identified, and duplicated. This is why there are so many generic drugs on the market. After the patent on a chemical drug expires, another manufacturer can make an exact copy of the drug. Because they are identical, generic drugs and name-brand drugs can be used interchangeably.

To quote the U.S. Food and Drug Administration (FDA) directly, “A biosimilar is a biological product that is highly similar to a U.S. licensed reference biological product for which there are no clinically meaningful differences in safety, purity, or potency of the product.”

So, while a biosimilar might seem to be the generic version of a biologic drug, that’s not really accurate, because making a biologic drug is so complex.

“These biologic medications are generally proteins, and proteins are very different from general chemical compounds,” said Philip Lammers, M.D., chief of the Division of Hematology/Oncology at Meharry Medical College and adjunct assistant profess of internal medicine at Vanderbilt University. “Proteins not only have the chemical makeup, but they also have different ways of folding on themselves in different structures that are just a little bit different from chemical compounds. It’s actually impossible to create kind of a generic protein or a generic biologic drug, and so biosimilars are really medications that are very similar to these biologic drugs or compounds. The goal of the biosimilar drug is to be as similar as possible to the existing biologic drug in structure and in toxicity and efficacy.”

(Listen to Dr. Lammers discuss biosimilars in this podcast.)

Here’s an example of how a biologic drug might be made: DNA that encodes or makes the desired protein is transferred into host cells. Those host cells then grow in a bioreactor, which is basically a big tank. When there are enough cells, the desired protein is harvested from the cells and purified. The purified protein is then put into a form that is stable and can be given to people. The process of creating a biologic drug is hugely important and unique to each drug. Biologic drugs are very sensitive to changes in the manufacturing process. If one step is done differently, the final product may have very different effects.

The makers of biosimilars don’t have access to the process used to create the original/reference biologic drug. They also don’t have access to the original cell lines or the exact purification process or other manufacturing steps used by the makers of the biologic drug. This is why thinking of biosimilar drugs as generics isn’t completely accurate. It is not an exact chemical copy, but it is highly similar.

It can help to think about the differences between baking a cake and making cheese. If you buy several boxes of cake mix, add the amount of water and eggs required, and bake at the proper temperature, it’s a good bet you’ll have several identical cakes when you’re done. But if you’re trying to make a blue cheese, you need to begin by adding starter bacteria culture (which are living organisms) to milk and then add a curdling agent, such as rennet, to further solidify the milk. You have to press the curds that form to remove the moisture and add just the right amount of Penicillium mold or other specially cultivated bacteria, and then age it in a temperature-controlled environment. In most cases, each cheese you make will be slightly different because living organisms are involved in its creation. Overall, the cheeses will be highly similar, but they won’t be chemically identical.

How do we know biosimilars are safe and effective?

Because by definition a biosimilar must be highly similar to a drug that’s already approved by the FDA, most of the research done on biosimilars is aimed at proving that it is, in fact, highly similar. Once that similarity is established through analytical and preclinical studies in cells and animals, the biosimilar moves on to studies on its physiochemical properties: understanding whether it binds to the exact same sites in the same way, sends out the same chemical signals, and causes the same response in cells, for example. The dose of the biosimilar is exactly the same as the biologic reference drug. After the physiochemical studies are completed and offer good results, the biosimilar will be tested in a group of people diagnosed with the disease that the original biologic is used to treat to see if there any differences in response.

For example, a biosimilar of Herceptin called MYL-1401O was recently tested in 458 women diagnosed with metastatic, HER2-positive breast cancer. The women were randomly assigned to receive either:

• Herceptin with chemotherapy
• MYL-1401O with chemotherapy

The results showed that MYL-1401O was as effective and safe as Herceptin. The same amount of cancers in each group responded the same way to each treatment. The side effects the women experienced were the same in both groups, and the percentage of women who had side effects was the same in both groups.

A study on another biosimilar of Herceptin, ABP 980, found that ABP 980 also was as safe and effective as Herceptin. In this study, ABP 980 and Herceptin were given with chemotherapy before surgery to treat early-stage, HER2-positive breast cancer. After surgery, the women got either ABP 980 alone or Herceptin alone.

Once a biosimilar is approved by the FDA, it also undergoes what’s called “pharmacovigilance.” This means that the manufacturer continues to monitor the safety and efficacy of the biosimilar to make sure the biosimilar doesn’t cause any new side effects and continues to be effective.

What are the advantages of biosimilars?

Because biologic drugs are very expensive to make, many them cost consumers thousands of dollars per month. In more than a few cases, the high cost can prevent a person from receiving the treatment.

Most experts say that biosimilars will be less expensive than the original biologic drug, but how much less expensive isn’t known yet. It’s hoped that this lower cost will allow more people access to treatment.

For example, if a biosimilar for Herceptin is approved by the FDA, it could allow more access to treatment for women diagnosed with HER2-positive breast cancer.

“I think the big advantage of [biosimilars] being on the market is, number one, hopefully, it will bring down the costs of these drugs,” said Dr. Lammers. “These biologic medicines for cancer are some of the most expensive medicines out there today, costing hundreds of thousands of dollars for one patient for a year of treatment in some cases. So, as with anything in the market economy, if there are multiple drugs on the market, we hope that the cost will come down. Now, it’s not going to be $10 dollars instead of $10,000, but we hope that maybe the price will come down 20% or 30%. And because there will be more companies participating in making these drugs, we also hope that more people around the country and the world will have access to these wonderful biologic drugs.”

“Lack of access is not a major issue in the United States, because most patients have insurance that covers trastuzumab,” said Hope Rugo, M.D., professor of medicine at the University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center and member of the Breastcancer.org Professional Advisory Board. “I’ve not seen a situation where it wasn’t covered for a standard indication.”

Still, in other countries, cost can mean that some women don’t receive the treatment.

“A number of studies have been done over the last few years showing places around the world where it’s almost impossible for patients with breast cancer to get access to some of these lifesaving [biologic] drugs because of how expensive they are,” added Dr. Lammers. “It’s also surprising to some of us that studies have shown certain populations in the United States — elderly patients and minority patients in particular — don’t get the same treatment and often don’t have the same access to some of these biologic drugs that other people do.”

What’s in the biosimilar pipeline for breast cancer?

As of June 2016, two biosimilar drugs have been approved in the United States:

• Zarxio (chemical name: filgrastim-sndz), a biosimilar of Neupogen (chemical name: filgrastim); it’s used to reduce the risk of infection in people being treated with chemotherapy
• Inflectra (chemical name: infliximab-dyyb), a biosimilar of Remicade; it’s used to treat rheumatoid arthritis, Crohn’s disease, and plaque psoriasis

In 2017, the patents will expire on both Herceptin and Avastin. The European patent on Herceptin expired in 2014.

Besides the two biosimilars of Herceptin mentioned earlier, there are four other Herceptin biosimilars being studied. There are four biosimilars of Avastin being studied.

“There are several biologic drugs that will be coming off patent, and Herceptin is one of the first,” explained Dr. Lammers. “But this is going to be something that becomes commonplace over the next 10 years as more of these biologics that we’ve been using for 15 to 20 years come off patent and open the door for competitor drugs.”

Stay tuned to Breastcancer.org’s Research News to keep up with all the latest news on biosimilars to treat breast cancer.

Editor’s note: On Dec. 1, 2017, the U.S. Food and Drug Administration approved Ogivri (chemical name: trastuzumab-dkst), a biosimilar for Herceptin, to treat people with HER2-positive breast cancer or HER2-positive metastatic stomach cancer. Ogivri was previously known as MYL-1401O.

The following month as I was preparing to begin radiation treatment, I received a call from the genetic counselor indicating that I tested positive for a breast cancer gene mutation. I immediately called my new breast surgeon and oncologist, and both agreed that the only way to protect me from developing a future, more aggressive cancer was to have a double mastectomy.

Fear, panic, thoughts of running away — all of these things flowed in and out of my head. But I also felt that the only way I could make it to the operating table was with the support of my close family and friends. Here’s where things got a little tricky and when I learned a valuable lesson that is worth sharing.

When a person is scheduled for surgery, let’s say a gallbladder, appendix, even lung surgery, these are internal surgeries that no one can see after they are completed. Sure, you have scars, but they are covered by your clothing for the most part. However, having your breasts removed is a very personal experience and affects women on a different level than another surgery may. This can make you question your femininity, sexuality, attractiveness to your significant other and a whole host of other things. It’s hard to describe, unless you are actually in this space, how vulnerable you can feel going into this surgery. Breasts are on the outside of our bodies, and even though they are also covered with clothes, they are something that people look at — ESPECIALLY when they know something is up with them!

It’s super important to be very careful who you share your journey with and that you make it crystal clear what your expectations are concerning privacy.

Let me explain in greater detail: Upon learning that I was going to have a double mastectomy, I told my immediate family and some friends what was going on. My mistake was that I did not make it clear to anyone that they should not share this information with others. As a result, more people than I had anticipated – people I would have preferred NOT know — became privy to what I assumed was confidential information. When you live in a suburban, close-knit community such as mine, news like this flies through town. Instead of being my personal journey, it became “this month’s story.” Everyone knew. I could have taken out a full page ad in our local newspaper and fewer people would have known than had learned via word of mouth.

I felt wounded and betrayed that people I trusted with my story felt that they had the right to share it with others. That being said, it was partly my fault because I did not set boundaries by letting my people know that this information was for their ears only. I assumed that it was understood, but that was not the case. The net result was that not only did so-and-so’s friend know, but her husband and her kids knew — and this was very unsettling for me.

If I could turn the clocks back, I would have done a better job in the communications department. But the past is over for me and I have completely come to terms with people knowing about my surgery, so I turn to you to impart one piece of advice if you are about to embark on this journey: I encourage you to think long and hard about the circle of friends with whom you share your story, and even more importantly, to make it clear to them if you want to keep it private and confidential. Moving forward, you will avoid a lot of unsettling feelings and anxiety if you communicate your wishes clearly with your people. Physically, this journey is challenging enough. It will be easier emotionally if you are in control of and comfortable with who knows your story.

Research News

Untreated Long-Term Side Effects of Breast Cancer Treatment Can Lead to Anxiety, Depression

Adding Afinitor to Faslodex Helps Treat Metastatic Disease That’s AI-Resistant

Antidepressant Duloxetine Eases Joint Pain Caused by Aromatase Inhibitors

How Does Radiation Affect Reconstruction Results?

Preventive Medicine Helps Ease Diarrhea Side Effects With Neratinib

Herceptin Biosimilar Seems as Effective as Herceptin

Study Finds Side Effects of Experimental Buparlisib Too Toxic

Extending Aromatase Inhibitor Use Beyond 5 Years May Benefit Some Women

Scalp Cooling System Shown to Reduce Hair Loss During Chemotherapy

Podcasts

Radiation Effects on Reconstruction: Heard in the Halls

Marisa Weiss, M.D.

Overcoming Hormonal Therapy Side Effects: Heard in the Halls

Marisa Weiss, M.D.

Quality of Life With Metastatic Disease: Heard in the Halls

Leah Eshraghi

Male Breast Cancer Advocacy: Heard in the Halls

Michael Singer

Experimental Buparlisib Offers Benefits, But Side Effects Too Toxic

Ruth O’Regan, M.D.

Scalp Cooling: Heard in the Halls

Marisa Weiss, M.D.

Liquid Tumor Biopsies: Heard in the Halls

Philomena McAndrew, M.D.

New Scalp Cooling System Can Reduce Hair Loss From Chemotherapy

Julie Nangia, M.D.

Does 2.5 to 5 More Years of an Aromatase Inhibitor Offer Benefits? Maybe, For some Women

Terry Mamounas, M.D., M.P.H.

A recent survey has found that 80% of men at higher risk of breast cancer aren’t aware that they can be diagnosed with the disease. While men make up just 1% of the total breast cancer diagnoses, this is the same percentage as women under 30 who are diagnosed. Let’s make sure men are aware of their risks, particularly those with a family history of the disease.

***

I’m a 66-year-old man, two years post-treatment for inflammatory breast cancer, happy to share my experiences and, particularly, to help raise awareness. Upon [my] diagnosis, friends and family reflected the community’s varying understanding about males and breast cancer in that most were unaware that guys get this disease, too.

It took me three months to convince my general physician that my breast lumps needed scanning, despite a family history of breast cancer. This meant that I was diagnosed at stage IIIB and had to undergo neoadjuvant treatment consisting of chemo, surgery with axillary clearance, and radiation. I tolerated the treatment well and am now on tamoxifen. I am always quick to point out that the care I received was first class and as equal to that of the many women I was treated alongside. Subsequent genetic testing showed that I had a variation of the BRCA1 gene of an unknown significance. Naturally, I let my three male siblings and my son know of their risk, and my 43-year-old daughter has joined a screening program.

I’d have to say that I felt no stigma as a man with this disease, although as I sought help from discussion forums like Breastcancer.org, it struck me that I really was one of the few guys looking for help. I also realized that many pink charities were not doing enough to point out that many men, particularly those with a genetic predisposition, are not being made aware of their risk.

Despite the male breast cancer discussion boards here being rarely used in recent times, I found support and went on to give support to a wonderful group of women at my cancer stage. Since no men posted regularly, I supposed that most guys are loathe to discuss their condition here because they were embarrassed by their diagnosis or that they don’t believe women’s experiences could help them. However, I have had private messages from several men looking for support outside a public posting and have used my training as a cancer connect telephone counselor to help them with advice, but mostly just to listen to their concerns.

Two years post treatment for breast cancer, my general physician was alarmed at a steep rise in my PSA level, so she sent me to a urologist for scans. Sure enough, a 16 mm tumor was discovered on one side of my prostate, and a biopsy showed an intermediate grade cancer with a Gleason score of 7. I have just completed a successful robotic prostatectomy where the pathology proved clear margins and no lymph involvement. Naturally I’m very pleased to discover that no further treatment is necessary. It turns out that nearly 30% of men who get breast cancer go on to develop a prostate cancer.

It’s interesting to record that it took me seven months to get NED with breast cancer and just seven days to achieve the same result for my prostate cancer.

Since later diagnosis leads to poorer prognosis, let’s help men with awareness, screen those with hereditary risk, and encourage research on male breast cancer.

Tamara Shulman, Ph.D., F.A.A.C.P., clinical psychologist

“When you are wrapped up in caregiving, it is easy to forget to take care of yourself. Even if you can only take 20 minutes for yourself, it is so important to do something you enjoy — a short walk, reading a book, listening to or playing music, anything you like — every single day. Ideally, it’s good to arrange for a longer break, and plan for someone to take over while you are away. This could be a relative, friend, or paid caregiver. If you live near a college, a responsible student headed for a career in nursing or medicine or eldercare might be inexpensive, responsible help that allows you to take a break for several hours. Do not feel guilty about taking a break for yourself. Resentment, depression, and anxiety are emotional risks for caregivers, and self-care is crucial to preventing burnout and offering patient, loving care to your loved one.”

Marc Silver, author, Breast Cancer Husband

“A cancer caregiver may feel guilty taking some ‘me’ time. I did. But the best advice I got was: Don’t be a martyr. There are many times when you need to be on call 24/7, but there are also times when you can prevent burn out by doing something that gives you a moment of zen: a bike ride, hanging with friends at a bar, watching a favorite TV show. Caregivers burn out — and finding a way to escape is a great antidote. But don’t forget to ask your spouse or other family member if it’s okay to take a little time off.”

Sage Bolte, Ph.D., M.S.W., L.C.S.W., O.S.W.-C., CST; Executive Director of Life with Cancer, Inova Schar Cancer Institute in Northern Virginia

“Role changes can be challenging within relationships when someone is diagnosed with cancer. It is critical to take time out from ‘caregiver’ and ‘patient’ and focus on being a couple or family. This can be as simple as watching a funny movie on the couch and allowing someone else to bring you dinner or do the practical things around the house that need to be done while you take time out. Additionally, although you may have had to pick up more responsibilities while your loved one is in treatment or recovering from treatment, it’s important to stop, sit, and assess your own self-care and needs.

“There is a reason the airlines tell you to first put your own oxygen mask on before putting it on your loved ones — if you don’t take care of yourself, you won’t be able to take care of anyone else. As caregivers, it is easy to often have your own needs overlooked by yourself, as well as your support team, as the focus is often on the loved one diagnosed with cancer. Asking for what you need is not selfish; it is self-care. It is okay to ask someone to come and be with your loved one while you go to the gym or the movies by yourself, or grab lunch with a friend. It is okay to ask someone else to help drive the kids, or bring meals, or do laundry. Both you and the person with cancer can look at household or important tasks that you enjoy doing and keep doing them and consider delegating the things that drain you. You are only as good a caregiver as you are at caring for yourself.”

Dr. Bolte shares the following strategies for taking care of yourself:

• Get support! Seeing a mental health professional can be very important for your well-being. Cancer and the stress of cancer does not only impact the person diagnosed. There are also wonderful professionally led support groups for caregivers and online resources. It is not uncommon for caregivers’ mental and physical health to also be impacted when someone they love is diagnosed. If you find yourself, for example, with a lower mood, worrying more, unable to concentrate, getting angry more often, experiencing sleep disturbances, or trying to avoid conversations, life, or self-care, these might be indicators that talking to your doctor and/or a mental health care professional could be really helpful.

• Do something daily that is just for you — this could be as simple as staying in bed an extra 10 minutes, getting your favorite coffee, going for a long walk, or pausing to watch a YouTube video that makes you laugh.

• Give your brain something else to do. Worry is common when someone you love is diagnosed with cancer. So, it is important to give your brain a break from worry. Find things that make you laugh. Make a list of 20 things you can do when worried, such as count the clouds, find a red car, watch a funny video, pet an animal — anything that allows you to pause and distract your brain from the worry so you can reset and refocus. Ground yourself. When you begin to feel anxious, take three slow deep breaths. Controlled breathing can help activate the relaxation response.

• Prioritize where you want to spend your mental and emotional energy. Identifying what’s most important to you and setting small achievable goals can help you feel more in control.

Prior to Angelina putting the BRCA mutation on the general public’s map, the only people who understood anything about it were the patients, their families, and some medical professionals. I say “some” because my journey as a BRCA2-positive male has proven to me that many doctors had no idea that MEN could carry, pass, or be diagnosed with breast or other mutation-related cancers.

AMAZING!!

Whether you are a survivor (like me, of both BRCA-related breast and prostate cancer) or a previvor (a person who carries a BRCA genetic mutation but hasn’t yet been diagnosed with cancer), being BRCA-positive is a life-altering, eye-opening experience.

Breast and ovarian cancer organizations have made tremendous strides over the last 10 years assisting women with care before and after diagnosis. Pretty much any breast cancer patient with family history of any other cancer is offered genetic counseling and testing for genetic mutations.

Not so for men.

Prostate cancer is the most prevalent cancer diagnosed in men. In 90% of the cases, BRCA mutations are never discussed with the male patients — and they are not offered further testing. On the other hand, because male breast cancer is rare, BRCA mutation testing is usually discussed with a man diagnosed with breast cancer.

Life as a BRCA-related male breast cancer survivor brings with it many challenges, including annual follow-up tests and daily lifestyle changes.

First, your family has to be aware that each of your children, regardless of sex, has a 50% risk of also carrying a BRCA genetic mutation. Men can pass it to their sons or daughters just as women can. Most people do not understand this. They also do not realize that 50% of all the BRCA carriers in the world are men.

Education, not fear, is the key here. I have two sons and no daughters. My sister and co-founder of the HIS Breast Cancer Awareness Foundation, Inc., has three sons and no daughters. Because we both have a BRCA2 mutation, each of our children has a 50% risk of carrying the mutation. (To date, two of our five sons have been tested, and, thank goodness, both are negative.) They are all in their early 30s.

All of our boys are aware of their risks. We have had very detailed conversations with all of them. They realize they have to be very aware of any changes in their bodies. Changes in their breasts, changes in their bowel or urinary habits, detailed awareness of their skin and any moles, monthly self breast exams.

BRCA2 mutations can cause breast, prostate, pancreatic, melanoma, and ovarian cancers. There is a difference between BRCA1 and BRCA2 mutations, and I won’t go into detail here, but BRCA2 mutations tend to manifest a little later in life and also tend to be more aggressive in certain cancers.

Lifestyle changes are necessary, in my opinion, whether you’re a survivor or a previvor.

I believe in supporting my immune system with a variety of foods, including turmeric extract and green shakes.

A balanced diet is also a key. I prefer to eat organic foods whenever possible. I am also very careful to have no soy in my diet because the cancer I was diagnosed with was hormone-receptor-positive. I also avoid sugar and alcohol, as I have read studies linking both to cancer recurrence.

I also eat a few meals weekly of non-farm-raised fish. Some studies suggest that farm-raised salmon has less than half the amount of omega-3 essential fatty acids than wild salmon. I also limit my red meat intake.

Exercise is a key part of my life as well. I mix going to the gym with long power walks, hikes with my dog Cassius, or even 18 holes of golf without a cart. Most fitness apps today count steps. I aim for between 10,000 and 15,000 steps daily.

I also have regular screening and testing, or what I fondly call “scanxiety.”

For my breast cancer screening, I alternate between a mammogram and an MRI with contrast every 6 months. This means twice a year I have a detailed screening of my breast area, including the side that was removed by mastectomy.

I am 5 years out from my early-onset prostate cancer diagnosis. I currently have PSA blood tests every 3 months. If a man has his prostate removed, his PSA levels should be zero. Any elevation in PSA post-surgery is an indication that the prostate cancer cells may have migrated to another area or organ.

A few years ago, I began having annual endoscopic ultrasounds, which scan my pancreas for any lesions. I also have an annual colonoscopy.

I refer to all of this testing as “scanxiety” because every time I have a screening test, I’m anxious that the results could show cancer. I can’t relax until my doctors confirm the results are negative.

I have check-ups with all three of my oncologists either once or twice per year. I also go for a complete body check with my dermatologist once a year. (BRCA mutations have been linked to melanoma.) Because I’m taking tamoxifen for 10 years, I have an annual eye exam. While the number of people affected is small, tamoxifen is known to cause eye problems, including dryness, irritation, and cataracts, according to the American Academy of Ophthalmology.

At least once a month, probably more often, I do a self breast exam of my remaining right breast tissue. On the www.HISBreastcancer.org website, we show men how to do the easy, 3-minute male self breast exam.

Life as a survivor of any type of cancer has its challenges. Life as a male BRCA-related breast cancer survivor presents additional stress and concerns, but education is key. If you know what you might be confronted with, you are more likely to avoid any new problems. We have all heard that early detection is key. If you potentially carry a BRCA mutation or other genetic mutation, get tested. Your life and your children’s lives could depend on it.

Knowing your risks allows you to better assess your options. This knowledge is extremely powerful.

My four words to live by:

• Educate
• Advocate
• Inspire
• Live

Photos provided by Harvey Singer.

Once you tell people about a breast cancer diagnosis, they will have questions — well-intentioned questions, worried questions, thoughtful questions, and sometimes awkward and ridiculous questions and comments. How do you handle this when you’re overwhelmed yourself? It’s not easy, but I can suggest a few strategies that can help.

There are resources available to help you talk to family and friends and ways to answer their questions. You can be selective about telling friends and coworkers if you think carefully about how you share the news. Many women find it helpful to have a “cancer-free zone,” whether it’s work, a book club, or anyplace else they choose not to talk about cancer. If someone notices and asks, you can acknowledge their concern, but also let them know that you prefer not to talk about it in this setting. You are entitled to request privacy, and let anyone who asks know that you are focusing on your work, or the book club, or whatever it may be, and that you enjoy the distraction.

But breast cancer should not be a secret, and telling friends can lead to welcome emotional and practical support. People may ask STUPID questions and make AWFUL comments, but most people are well intentioned. They may be shocked, worried, and even frightened of the very word “cancer,” but they usually do not mean to be hurtful. It can help to be prepared for these situations and think in advance about how you wish to respond. Thinking it through and being prepared can help you answer in your own chosen way even when you are tired, upset, worried, or feeling OK but upset by the question or angry about a comment.

Friends can be a wonderful source of support and comfort. So answering their questions thoughtfully is worth the effort to maintain your close connection. Everything can feel emotionally supercharged when you get a cancer diagnosis and it is a challenge to respond in a friendly way. If you are too upset to respond pleasantly or calmly, it could be best to simply say, “I would rather not talk about it right now.” You can be prepared for these moments by having a topic ready to shift into — like your pets, or good recipes, or even the local weather forecast.

Treatment questions are common. People may make suggestions, offer non-expert advice, relate stories of other people they know who had breast cancer, and ask about your treatment. You do not have to answer! A simple “I will run that past my doctors” is a great answer, even if the idea is so silly you will never run it past your doctors. Pointed questions about sensitive things, such as, “Will you lose your hair?” or, “Will you will lose your breast or have reconstruction?” can be answered with a straightforward, “I prefer not to talk about that now.” You can tell friends that you have a really good medical team to talk to about cancer, and you want to talk about other things with friends.

Work-related questions can be particularly difficult. If somebody asks whether you will keep working, or how you will juggle work with treatment, try not to feel put on the spot. You have probably talked to your treatment team and have some idea of what you will be doing, but you also want to be protective of your professional life. It is good to think this part through before you discuss it with anyone at work, especially management and HR. Be cautious talking with coworkers who may inadvertently say something or be overheard. Remember anything you say to a coworker may be repeated to management. Speak to your healthcare team about a possible Family Medical Leave, short-term disability, or other accommodations that you may need.

Not only are there questions about a cancer diagnosis — there are also flat-out comments. Comments like, “God never gives you more than you can handle” are common, along with statements about how “strong” you are when you are feeling overwhelmed. Who wouldn’t feel angry about hearing these opinions at this time? Have you seen how politicians often don’t answer a question, but say something else instead? It’s a good strategy for these remarks. You can thank them for their concern, or ignore the comment and change the topic. If someone is persistent, you can tell them you don’t want to talk about it.

If you have a close friend you want to talk with, do that privately away from acquaintances. With close friends, you can answer questions, share what you wish to, and tell them what you need at this difficult time. Without such close friends, you may want to join a support group, in person or online, to talk about your feelings and medical and practical questions with people sensitive to this experience. It can be an emotional roller coaster, and having good emotional support will help to make it easier to handle awkward questions or comments.

Frequently people ask, “How can I help?” This is a kind question, but too vague to be helpful. Think of what sort of help you will need. Then you can respond with well-prepared answers: cooked dinners, carpool help, sweeping up autumn leaves, dog walking, and babysitting when you have doctor visits or treatment. Maybe rides to treatment or company from a very close friend during a doctor visit.  Sometimes a friend can organize this for you so you don’t get three of the same meals on one night. Maybe you’ll want company for a movie night — or anything you wish. There are websites such as www.carecalendar.org that let friends sign on for things they can do to help. Delegate so you can use your energy for the things you really value, such as being with your children or your work. You can also say you’ll get back to them and “Thanks for the offer.” So don’t shrug this question off. Have an answer, or figure one out and get back to them.

Reassuring comments are very common, because people get anxious talking about cancer. The problem is the other person is the one who is trying to feel better. Breast cancer creates many uncertainties, and comment such as, “You’ll be fine” or, “It’s good they caught it early” may not feel good at all when you are justifiably frightened and upset. I like the idea of checking in with yourself and deciding whether you want to respond angrily by correcting the person and explaining you might not be fine, or that it is never good to have cancer. Or do you feel up to being patient and talking about your real feelings? It can depend a lot on who is commenting and how centered you’re feeling at the time. Think of the “PAUSE” button on your remote control, and imagine that you can press “PAUSE” in these encounters and not answer right away. “I will think about that” is a great and neutral answer that lets you take your time to decide how and when you will talk about it.

Positive spin comments about how great you look or how you were always so health conscious, or the “boob” job your insurance will now pay for, are annoying at best. Maybe you want to ignore these. The “boob” question possibly comes from a “boob” wanting a breast lift they cannot afford. When a thoughtless comment triggers you it can help to remember that you do not have to respond at all. Press “PAUSE,” change the subject, say you are not up to discussing it — whatever works well for you is fine. It is not your job to educate others. When you are facing major surgery for a life-threatening illness, real support will come from those who try to understand your actual feelings and give you the time and space you need to choose what you wish to share and discuss.

I am always shocked when someone shares a frightening story of cancer that has spread or someone who has died of breast cancer. You do not need these anecdotes! As a patient, you know about these possibilities already. You can choose what you will do, whether saying nothing, asking why they are telling you this, or walking away. But you probably will not be choosing your emotional response. After an incident like this, it is important to take care of yourself. Remind yourself of what you know about your individual prognosis. Reach out to a loved one, friend, local or online support group, or your medical team for help or information. Get some real information and support during this difficult time.

Coping with comments and questions, whether kind, awkward, or upsetting, is hard. People react to cancer news in different ways and may be wonderfully supportive or terribly upsetting. Think carefully about who you will choose to share with to limit unwanted conversations, while knowing your news may spread sooner or further than you wish.

In conclusion, preparing yourself with strategies that work for you can make it easier to navigate the questions and comments you will surely hear. Friends and family have different relationships with you, different feelings and experiences around cancer, and their own anxiety and worry about your diagnosis. If you are prepared for how you wish to respond — or not — it will be easier to cope with the inevitable questions and comments while also keeping the support and caring attention from the people in your life.

Patients have asked me about any links between the type of anesthesia used during breast cancer surgery.

I searched the National Library of Medicine database and could find no high quality evidence suggesting a link between anesthesia and cancer recurrence.

High quality evidence is a large, randomized, prospective trial. This kind of study is considered the gold standard of research. In this case, that kind of trial would likely randomly assign people who’ve been diagnosed with cancer and were going to have surgery to one of several types of anesthesia. Then the people would be followed for many years after surgery, because recurrences can happen, 5, 10, or 20 years after the initial diagnosis. The researchers would collect information on how many of the people in the study had cancer recurrences and then compare that to the type of anesthesia that was used during surgery. That way, they could see if one particular type of anesthesia was linked to a significantly higher number of recurrences that were not just by chance.

But that type of research HAS NOT been done on this topic. There is some weak evidence from studies in mice and test tubes that is suggestive of a link, but this type of evidence doesn’t necessarily translate into a difference for patients. Observational studies in actual patients have had conflicting results.

It’s also very important to know several things:

• These studies were not prospective, they were retrospective. This means that the evidence was already collected for another reason and then the study was designed. The results from retrospective studies are considered weaker than results from prospective studies.
• While we can learn a lot from animal and cell studies, they’re not exactly the same as people. Sometimes what happens in mice doesn’t happen in people.
• According to a review published in 2014, only one very small (129 patients) retrospective study has looked for any links between breast cancer recurrence and type of anesthesia used during surgery. The review calls for randomized clinical trials to be done to help answer the question. I think a better study should be done to provide a conclusive answer to this important question.

These results DO NOT mean that women should avoid breast cancer surgery. They also don’t mean that women have to endure breast surgery while awake. Decisions about surgery depend on many factors. You and your doctor will determine the kind of surgery that’s most appropriate for you based on the stage of the cancer, the “personality” of the cancer, and what is acceptable to you in terms of your long-term peace of mind.

For more information about the types of breast cancer surgery and factors to consider when making your decision, check out the Breastcancer.org Surgery section.

It was fitting, not flip. Marie had given me the PBR shirt. At one point we had bonded over our hatred of beers “with too much flavor” and our love of music and bowling. PBR and Miller High Life suited us just fine.

Another friend said, “Marie would kick all our collective asses if we wore boring black to her memorial.”

And she would have.

Marie died of metastatic breast cancer on August 10 at her home in St. Louis, surrounded by her loving husband and family and her adored cats. She was 53. A year younger than I am.

I recorded a podcast for Breastcancer.org with Marie in 2015 in which she talked about how she felt marginalized during Breast Cancer Awareness Month. In her mind, October was all about pinkwashing and awareness when what she and thousands of other metastatic patients needed was a cure.

“You know,” she told me after we stopped recording, “I’m really very aware of breast cancer.”

Marie was first diagnosed with breast cancer in 2000 at age 36. In 2007, the cancer returned in her liver and bones. She sent me an email: “You may have heard. It’s back.”

Marie was like that. Sharp, to the point, sarcastic, but fiercely loyal. Everyone was mocked with razor-sharp wit, but it was because she loved them. Marie’s nickname was “Edgy,” which was perfect. Her anger could flare quickly, but it flamed out just as quickly.

Marie was a person who got things done but who always had time to talk to you, who cared about what was important to you.

I remember complimenting her on the beautiful basement renovation she had overseen. “Well, I had a plan,” she said with a huge laugh. Marie always had a plan. She was organized and disciplined. Repeat: She got things done.

Marie loved her husband, her family, music, all cats, and her friends.

She, more than anyone else, is responsible for me having friends in just about every state. In the early 1990s, a bunch of us who liked what was called alternative country music were part of an Internet discussion group called Postcard 2. Since so many musicians were part of the group, a small “festival” happened in St. Louis. It was classic Little Rascals, “Hey-kids-let’s-put-on-a-show”-type thing, but it allowed a bunch of Internet nerds from around the country to meet each other in person, hang out, and debate the meaning of obscure alt country band lyrics ad nauseum.

Everyone had fun and bonded over the music and DIY aspect of it all and wanted to do it again. Marie took the reins and turned the ragtag gathering into Twangfest, an annual music festival that brought in acts and attendees from around the world.

We were strangers with music as a common thread, and Marie wove us into a group that became a family. We went to each others’ weddings and holiday celebrations, checked in on people that hadn’t been heard from in a while, and were always were there for each other.

Twangfest grew exponentially, but Marie made sure that those of us who helped birth it still felt welcome and special each year. She was a connector, a person who introduced people to others, who made sure that any Postcard 2 out-of-towner who was coming to his/her first Twangfest alone soon had a group of people to hang with.

Marie could handle just about anything, except for a failure to rawk. Her throaty yell often boomed from the back of a venue: “BRING THE RAWK!”, sometimes followed by an affectionate expletive.

June 2016 was the 20^th anniversary of Twangfest. I went, sort of for the music, but mostly to see Marie. Off-mic, after we recorded the podcast last year, she told me about the lesions in her knee that were going to require knee replacement surgery, about how it was hard for her to walk, how she missed going out to shows. I think a lot of us felt that this Twangfest was a chance to say goodbye to Marie on her terms, surrounded by music and friends.

She texted another friend in early August, “I don’t feel on the edge of dying at all. My hope and fighting spirit are firmly in place.” But her body just couldn’t keep up anymore.

Her memorial was cathartic. Folks converged on St. Louis from Boston, Seattle, Chicago, New Jersey, Iowa, Indiana, Illinois, Baltimore, Texas, Ohio, and other far-flung places. Her husband, John, delivered a wonderfully beautiful, sad, and funny eulogy that captured her humor, her spirit, and her compassion. After weeks of teary texts and Facebook posts, actually seeing, hugging, and crying with my extended musical family that Marie helped create tempered some of the sadness and reminded me that Marie would want us to celebrate her, her life, her spirit, and find joy in everyday things.

A St. Louis friend read a Conrad Aiken poem, “Bread and Music,” at the memorial — it sums up so much about Marie:

Music I heard with you was more than music,
And bread I broke with you was more than bread;
Now that I am without you, all is desolate;
All that was once so beautiful is dead.

Your hands once touched this table and this silver,
And I have seen your fingers hold this glass.
These things do not remember you, beloved,
And yet your touch upon them will not pass.

For it was in my heart you moved among them,
And blessed them with your hands and with your eyes;
And in my heart they will remember always,—
They knew you once, O beautiful and wise.