The doctors in Turku initially thought it might be lung or stomach cancer. Surgeons performed a diagnostic procedure to identify her disease. At only 51 years old, Annukka was diagnosed with mesothelioma. 

The diagnosis came as a shock. There are only about 100 mesothelioma diagnoses per year in Finland, according to the Finnish Institute of Occupational Health. In the U.S., for example, there are only approximately 3,000 diagnoses each year. In their small Finnish island community, Annukka’s doctors had little experience with this malignant cancer. Based on their diagnostic assessment, her prognosis was very poor. 

Ulf tells us the doctors’ message was simple and devastating: she had only months to live. He says the diagnosis turned their life together upside down and he’s still processing it all. But he wants others in a similar position to know they’re not alone. 

Transitioning From Teacher to Fulltime Caregiver

He took sick leave from his job as a special education teacher the same week they received Annuka’s diagnosis. From that point on, he was with Annukka almost every day, whether she was home or in the hospital.

Ulf  had a heart attack in May 2022, just weeks after receiving Annukka’s mesothelioma diagnosis, which he suspects was likely from the stress of it all. At one point, both Ulf and Annukka were simultaneously in different units of the same hospital. The couple each arrived separately by helicopter, a month apart.

Once home he took on being his wife’s mesothelioma caregiver. Ulf managed her medications, tracked her care, organized her paperwork and fought hard for her needs. “You just do what you have to do,” he says.

Navigating an Unfamiliar Diagnosis

Because mesothelioma is so rare, even experienced oncologists may never see a case in their careers. For Ulf and Annukka, that meant navigating care without a clear roadmap.

Ulf says home care visits were inconsistent. A formal care plan that reflected Annukka’s wishes took time to put in place. The couple did their best to stay organized, managing her medications and paperwork themselves. It wasn’t easy, but they kept pushing forward together.

Language barriers added another layer of difficulty. The hospital operated in Swedish, but Annukka spoke Finnish. Ulf found her a therapist online who could speak Finnish because local options weren’t available. But he shares, “She got tired of that.” Annukka eventually became too weak to attend any sessions.

One Last Summer Together 

Based on her diagnosis, doctors gave Annukka the choice to try chemotherapy or pursue palliative care. Without treatment, they said, Annukka might have only months. They decided to try one round of chemo. The first round was unsuccessful, but her protein levels were too low to attempt a second round. 

Annukka’s mesothelioma treatment transitioned to a focus on symptom-management. Steroids helped manage her mesothelioma symptoms well enough that she could leave the hospital and have time together at home. For Ulf, that summer meant everything.

Finding His Way Through Grief

Ulf was with Annukka for the last days of her life. She passed away on September 26, 2022. He organized her funeral and sang her favorite song at the service. Then Ulf says he had to rebuild. 

He shares he couldn’t return to his job working with children with special needs. It felt it was too much to carry with his grief. He found work teaching adult immigrants, which he says felt more manageable. 

He couldn’t find grief support locally, so he looked beyond Finland. Ulf connected with a therapist in the United States with whom he spoke throughout Annukka’s illness and for about a year and a half after. He also joined a grief group David Kessler, a well-known grief expert, led. He’s been part of that group since January 2023.

“That’s the one that helped me,” Ulf says. He’s also been writing a book about his experience, which has become part of how Ulf processes everything he went through. He says his life looks different now than it did before, but he’s moving forward.

Ulf’s Message to Fellow Caregivers: Just Be There 

Ulf’s advice for anyone caring for someone with a serious illness centers on presence. “Just be there,” he emphasizes. “Be present and make them know that you’re present and that you care about them.”

He also recommends caregivers not push the person they’re caring for to talk about death. It’s a painful subject and forcing the conversation puts the caregiver’s needs ahead of their loved one’s needs. Instead, he says, let them know you’re open. Tell them you’re ready to talk about anything if they want to. Then follow their lead.

For Ulf, being a caregiver meant setting aside his own fear and focusing on what Annukka needed. “Death is a hard question to talk about,” he reflects. “It’s like a double punishment. First you have to die and then you have to talk about it.”

He says he isn’t trying to tell people what to do. He’s sharing what got him through, one day at a time.

The post Loss and Moving Forward: A Mesothelioma Caregiver’s Story appeared first on Mesothelioma Center - Vital Services for Cancer Patients & Families.

Together, they covered who may qualify for mesothelioma surgery and what the procedure involves. They also walked peritoneal mesothelioma patients and caregivers through what to expect from the first consultation through recovery at home. 

Our panelists gave patients and caregivers a clearer picture of cytoreductive surgery with hyperthermic intraperitoneal chemotherapy. They also explained how combining CRS with HIPEC works and why getting care at a specialized center matters so much. 

Who May Be a Surgical Candidate?

Dr. Lambert explained that several factors determine if someone qualifies for surgery. She noted the first thing surgeons look at is the histology, meaning what the cancer cells look like under a microscope. Peritoneal mesothelioma falls into a few categories: epithelioid, sarcomatoid, biphasic (a mix of epithelioid and sarcomatoid) and some rarer types like papillary mesothelioma. Each behaves differently and calls for a different treatment approach.Surgeons then review imaging like CAT scans to assess if they can safely remove all the cancer from the abdominal cavity. Dr. Lambert explained that if cancer has already spread outside the abdomen, the recommended treatment plan will likely change. Dr. Brown added: “The first thing is to do no harm.”

Questions Surgeons Address for Eligibility

• Cancer stage and location: Is the disease confined to the abdomen? How much of it is there, and can surgeons remove it all safely?
• Medical history: Does the person have heart disease, diabetes or other conditions that could raise surgical risk?
• Patient goals: What does the person hope to get from surgery and what does recovery realistically look like for them?
• Prior treatments: Has the person had chemotherapy or radiation? How much and how recently?

Dr. Lambert stressed that she and Dr. Brown want every patient and their family to feel confident going into surgery. “The last thing we want to do is take somebody to the operating room for a long surgery with high risks that really wasn’t comfortable with that decision,” she shared.

What Can Make Someone Ineligible?

Dr. Brown and Dr. Lambert use diagnostic laparoscopy to avoid a surprise finding during surgery of flat sheets of tumor on the small bowel that don’t show up on scans. Too many tumors on the small bowel generally means surgeons can’t safely remove it, which would mean the patient isn’t considered a surgical candidate.

Diagnostic laparoscopy is a minimally invasive procedure using tiny incisions with a camera. Surgeons look inside the abdomen before scheduling an invasive operation. Dr. Lambert noted: “Wouldn’t you rather have just an overnight stay than be cut from stem to stern to be told you’re not eligible?”

Sometimes patients stay overnight after diagnostic laparoscopy, but often they can go home the same day. Patients don’t need to stop chemotherapy and most get back to their routines within a couple of days. Surgeons can also take biopsies during the procedure to check for any new mutations that might point toward a different mesothelioma treatment.

Peritoneal Mesothelioma Surgery: What Are the Options?

Dr. Brown and Dr. Lambert walked through the main surgical procedures used to treat peritoneal mesothelioma. Karen Selby noted that while there isn’t yet a cure for mesothelioma, surgery can offer meaningful benefits for the right patients.

Peritoneal Mesothelioma Surgery Options

• Cytoreductive surgery: The gold standard surgery for peritoneal mesothelioma, surgeons remove all visible tumors. Dr. Brown noted it’s often several surgeries performed at once, targeting different areas of the abdomen at the same time.
• Diagnostic laparoscopy: Surgeons insert cameras to assess the extent of tumor growth and spread, often before major surgery to ensure tumor-removing surgery is possible.
• HIPEC: Surgeons deliver heated chemo directly into the belly after tumors are removed. This chemo wash typically circulates for 90 minutes. Dr. Lambert explained that heat makes chemo more effective and helps it penetrate deeper into tissue.
• Omentectomy: Surgeons remove a fold in the lining of the abdomen (the peritoneum) called the omentum. Cancer cells can develop there and it can interfere with HIPEC circulation, so surgeons often recommend an omenectomy.
• Paracentesis: A minimally invasive procedure, paracentesis drains fluid from the abdomen, which can build up and cause significant discomfort.
• Peritonectomy: Surgeons remove the peritoneum, the lining of the abdominal cavity. Dr. Brown performs a complete peritonectomy of the abdominal wall and pelvis for most people with peritoneal mesothelioma.

Dr. Brown explained why CRS and HIPEC work best together: “The cytoreductive surgery is really for the disease that you can see and the HIPEC is really for the disease that you can’t see.” HIPEC only penetrates a few millimeters into tissue, so it can’t treat large visible tumors on its own. Each treatment addresses different aspects of the disease.

Free Webinar

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The Surgical Team and Cancer Center You Choose Matters

Dr. Brown and Dr. Lambert both emphasized that choosing where to have surgery is just as important as choosing a surgeon. Peritoneal mesothelioma is rare and the level of experience a center has with these operations directly affects outcomes.

At NYU Langone, a tumor board reviews every patient with peritoneal mesothelioma. Surgeons, medical oncologists, pathologists and radiologists meet together, review the case and plan the best approach as a team.

Karen added that post-operative nursing care plays a critical role in recovery from surgery. A team that regularly sees peritoneal mesothelioma patients knows what to watch for and how to respond. Dr. Brown encouraged patients to ask about the full support team at any center they consider, including intensivists, GI doctors and interventional radiologists, not just the surgeon performing the procedure.

What to Expect Before, During and After Surgery

The process begins well before a surgery date is even set, with the care team reviewing records and optimizing the patient’s health. For patients undergoing CRS with HIPEC, surgeons, nurses and the anesthesiology team work in close coordination across an operation that can span most of a day. Recovery is gradual but structured, with clear milestones guiding patients from the ICU to discharge and beyond.

Before Surgery

Before any surgical date gets set, the care team gathers all available records: pathology reports, imaging studies, prior treatment notes and lab work. Dr. Lambert said she and Dr. Brown review everything before they even meet with a patient so they can have a meaningful conversation about options. If surgery looks like the right path, patients may have a diagnostic laparoscopy first.

Dr. Lambert’s Preparation Advice

• Avoid smoking and limit alcohol in the weeks leading up to surgery.
• Eat enough protein to support healing. It can come from any source: fish, chicken, eggs or red meat.
• Get aerobic exercise. Walking, biking, swimming or any movement helps build the stamina needed for a major operation. “It’s like training for a marathon,” Dr. Lambert said.

One of the most common concerns during the waiting period is anxiety. Patients often worry that pausing chemo, which surgeons require before the operation to let blood counts recover, gives the cancer a chance to grow. Dr. Lambert said she’s rarely seen that happen. “If it did,” she said, “that would probably be a sign to us about the biology of that tumor. And honestly, the surgery probably wouldn’t be helpful.”

During Surgery

CRS with HIPEC is a long, complex operation. Dr. Brown said it typically runs 8 to 10 hours, with surgeons working through a midline incision from the chest to the lower abdomen.

Surgeons first explore the entire abdominal cavity to confirm the operation is feasible. Then they remove all visible tumors, along with any affected tissue nearby. Once that work is complete, the HIPEC process begins.

The HIPEC circulation runs for 90 minutes using a closed technique, with heated chemotherapy circulated through the abdomen via catheters connected to an external machine. The full HIPEC process takes about 2.5 hours from setup to completion.

Throughout the operation, the anesthesiology team continuously monitors heart, lung and brain function. Dr. Brown emphasized it’s a true team effort: “It’s a big coordination between the surgeons, the assistants, the nurses, the anesthesiology team and the folks on the floor.”

After Surgery

Most patients at NYU Langone go to the ICU immediately after surgery, not because they’re critically ill, but so the team can closely monitor vital signs, fluid levels and pain. Dr. Lambert said patients can typically expect a hospital stay of about 7 to 10 days.

Patients get up and moving the day after surgery. Walking helps stimulate the bowel, reduces the risk of pneumonia and helps prevent blood clots. Dr. Lambert outlined what patients need to accomplish before they can go home.

Dr. Lambert’s 5 Goals After Surgery

• Drinking enough to stay hydrated
• Eating a small amount of food
• Having a bowel movement
• Managing pain with medications they’ll take at home
• Feeling ready to leave

Dr. Lambert also warned patients to expect something on their first post-surgery scan: “The radiologist is going to see something. There’s going to be some kind of fluid or inflammation.” She reassures patients that this is normal after major surgery and that the first scan simply sets a new baseline.

Recovery at Home

Dr. Brown tells patients to expect a full recovery to take 2 to 3 months. Energy levels fluctuate. Some days feel like progress while others feel like a step back. Appetite may return slowly. Emotional challenges are also common and completely normal.

A strong support system at home makes a real difference. Caregivers can help with meals, transportation to follow-up appointments and day-to-day tasks while the patient heals. Dr. Brown encouraged patients to call their surgical team with any questions or concerns, no matter how small. “The only bad phone call is the one that’s not made,” he stressed.

Dr. Lambert closed with a reminder for patients not to rush themselves: “Be incredibly patient. It’s a lesson in patience. The recovery is not to be underestimated. Be kind to yourself.”

The Importance of a Second Opinion

Both Dr. Brown and Dr. Lambert encourage patients to seek a second opinion and not just from another surgeon. Dr. Brown said patients should also ask for another pathologist to review the diagnosis, since peritoneal mesothelioma comes in several subtypes that each require different treatment approaches.

“If surgery was ruled out too quickly, maybe see somebody else,” Dr. Brown noted. “The expertise really does vary.”

Neither doctor takes it personally when patients want another set of eyes on their case. Getting the diagnosis and the treatment plan right matters more than anything else.

What the Research Shows

Dr. Lambert said the volume of research on peritoneal mesothelioma treatment has grown significantly in recent years. She added that the field has gotten much better at selecting the right patients for surgery. 

Surgical techniques keep improving and treatments like immunotherapy are changing how surgeons sequence treatment. While immunotherapy isn’t yet FDA-approved for peritoneal mesothelioma, clinical trials focused specifically on peritoneal patients are now enrolling participants.

“Longer-term survival is becoming achievable in the right setting,” Dr. Lambert emphasized. “When we meet somebody, we’re looking to do everything that we can to help them be one of the people who achieves long-term survival with this disease.”

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Research in psycho-oncology, the study of emotional and social aspects of cancer, indicates cancer patients who receive social and emotional support have a better quality of life. A 2025 systematic review published in BMJ Oncology found that loneliness among cancer patients was associated with a 34% heightened risk of death from any cause.

This is especially true for rare cancer patients. A 2024 systematic review published in the Orphanet Journal of Rare Diseases found that rare cancer patients experience worse psychosocial outcomes than those with more common cancers, including higher rates of anxiety, depression and PTSD. 

Support comes in many forms: mental health professionals, family, friends and peers who are also dealing with mesothelioma. Peer support is unique because it allows mesothelioma patients to talk to others going through the same diagnosis. Talking to others with mesothelioma is helpful because there is an existing understanding of many aspects of mesothelioma treatment that family and friends may not have. With peer support it’s not necessary to explain about scans, procedures etc. Luckily there are several options to meet and connect with peers who also have mesothelioma. 

How a Rare Diagnosis Like Mesothelioma Can Exacerbate Cancer-Related Loneliness

There are unique challenges and complications in dealing with rare diseases like mesothelioma. Many of those challenges can  affect mesothelioma patients’ physical, mental and emotional wellbeing. It’s common that mesothelioma patients find there is a lack of knowledge about rare diseases like mesothelioma both in their community and even among their general healthcare providers. 

Rare diseases are commonly misdiagnosed or there are delays in diagnosis which can cause emotional distress as well as limit available treatment options. The Orphanet systematic review noted among the more challenging illness trajectory rare cancer patients face are delays in diagnosis and receiving incorrect treatment.

The review also noted people with rare cancers can have more limited access to clinical trials. Many mesothelioma patients have expressed frustration to me that research funding is not as high as other more common types of cancer such as breast, lung or prostate cancers. Finding mesothelioma specialists may require frequent or extensive travelling to consult and get treatment. 

These stresses of a rare diagnosis impact the emotional distress and loneliness that many mesothelioma patients may feel. And mesothelioma is a very rare type of cancer. The National Organization of Rare Disorders defines a rare disorder as a disease or condition that affects fewer than 200,000 Americans. There are more than 10,000 types of rare disorders. And mesothelioma is a very rare type of cancer, with approximately 3,000 new cases diagnosed in the U.S. each year.

This underscores the importance of finding peer support among mesothelioma survivors. It’s also important for caregivers and family members, helping a loved one manage this uniquely challenging cancer.

How Patient Feedback Built Our Mesothelioma Online Support Community

The Patient Advocates at the Mesothelioma Center in their daily conversations with mesothelioma patients often heard they were having trouble finding anyone in their community or at their cancer treatment center also living with mesothelioma. Patients and caregivers really wanted to talk to others experiencing the same diagnosis and treatment challenges. In response to this feedback, the team started an online support group in 2013, which has now been providing a safe space for mesothelioma patients and their caregivers to connect with one another for 13 years. 

Our monthly online support group is only open to current mesothelioma patients and their caregivers. Participants can join online or through a phone call. Our group members routinely talk about how much they get from the group and being able to hear other people’s stories and experiences with mesothelioma. 

The Mesothelioma Center also moderates a Facebook group only accessible to people with mesothelioma, their family members and friends. One benefit of a Facebook group is that members can log in at any time of the day or night and read about other mesothelioma experiences as well as give and receive support from others outside of our monthly support group.

Another opportunity for connection is attending The International Symposium for Malignant Mesothelioma, which is an annual event, usually held in the autumn at various locations throughout the country. It’s a great forum to hear presentations from mesothelioma experts and to meet other patients and caregivers at the support groups and social events held at the symposium. Some cancer treatment centers also offer their own peer support programs where they match newly diagnosed patients with former patients who have the same diagnosis. If you’re getting treatment at a facility that has mesothelioma specialists, then it’s worth asking if they have a peer support program for mesothelioma.

1:15

Patient Story | Kevin Hession: Why I keep coming back to the mesothelioma support group.

The post Rare Cancer & the Loneliness Epidemic: How Support Groups Help appeared first on Mesothelioma Center - Vital Services for Cancer Patients & Families.

From a Grim Prognosis to a Remarkable Recovery

She was intubated, transferred to a respiratory rehabilitation facility in Kentfield and unable to breathe on her own. The staff, kind and honest, told us to begin thinking about permanent care. 

Dr. Velotta said: That’s not the plan. Lawanda underwent a pleurectomy for mesothelioma with Dr. Velotta. [A pleurectomy removes the pleura, which is the thin membrane around the lungs where pleural mesothelioma tumors develop.]

A week later, she breathed on her own. The staff was mystified. Dr. Velotta was not. And then 93-year-old, Oklahoma-born, Berkeley-educated, lifelong painter and folk musician and lover of a good glass of white wine Lawanda walked out of that facility on her own two feet. 

Our Message to Mesothelioma Patients and Families

Lawanda is now approaching her 94th birthday. Every Wednesday she goes to hear live music with  her boyfriend Dale and her friends. She paints. She hosts dinners. She loves her family fiercely and without reservation. 

This is what Kaiser Permanente made possible. Not just the surgery, the belief. The belief  that every patient is an individual, that age is a number and not a verdict, that the right doctor asking the right questions can rewrite what everyone else assumed was the ending. 

If you are a patient or a family weighing your options, weighing the odds, being told what isn’t possible, we are here to tell you: Find your Dr. Velotta. Ours happened to be at Kaiser Permanente Oakland Medical Center. We will be grateful for the rest of our lives.

The post A Mesothelioma Story of Hope: Walking Out on Her Own Two Feet appeared first on Mesothelioma Center - Vital Services for Cancer Patients & Families.

They’ll discuss who doctors consider as candidates, how cytoreductive surgery with heated intraperitoneal chemotherapy fits into treatment and what current research tells us about outcomes. Not every patient will be a surgical candidate, but knowing what the options are and what questions to ask your care team can make a real difference. 

Patients, caregivers and loved ones are all welcome. Registration is free. Watch live or on demand.

Topics Dr. Lambert and Dr. Brown Will Address

Dr. Lambert and Dr. Brown bring both surgical expertise and real clinical experience with peritoneal mesothelioma patients to this conversation. Their goal is to give patients and caregivers a clear, honest picture of what surgery involves and what the current evidence supports. Whether you’re newly diagnosed, mid-treatment or already in discussions about surgery, the topics they’ll cover are ones that come up in nearly every peritoneal mesothelioma consultation.

• Benefits, risks and recovery: Every surgical decision involves tradeoffs. Dr. Lambert and Dr. Brown will walk through what patients can realistically expect when weighing surgery as an option.
• Cytoreductive surgery with HIPEC: Both approaches often work together in peritoneal mesothelioma treatment. We’ll explain what each one does and why doctors frequently combine them.
• How doctors evaluate surgical candidates: Not everyone with peritoneal mesothelioma is a candidate for surgery. We’ll explain what factors go into that evaluation and what patients can do to prepare for those conversations.
• How surgery fits into a full treatment plan: Dr. Lambert and Dr. Brown will explain how it connects with other treatments and what a broader care plan can look like.
• Questions worth asking a surgical specialist: The right questions can change the direction of a consultation. We’ll share what patients and families should bring to any meeting with a surgical specialist.
• What current research shows: Science around surgery for peritoneal mesothelioma keeps advancing. We’ll share what recent findings mean for patients making decisions today.
• What to expect at each stage: From preparation through recovery, knowing what’s coming helps patients and families feel more in control.

Whether surgery is part of the current conversation or still just a possibility, this is an opportunity to hear directly from surgeons who have spent their careers treating peritoneal mesothelioma. This webinar directly delivers practical surgical expertise and best practices from specialized oncologists for a rare cancer, helping to empower people to have more informed conversations with their care team about treatment decisions.

About The Panelists

Dr. Laura Lambert, Surgical Oncologist and Peritoneal Mesothelioma Specialist

Dr. Laura Lambert treats patients with advanced abdominal cancers at NYU Langone Health, with a focus that includes peritoneal mesothelioma. She runs a multidisciplinary program where specialists across cancer care work together to build personalized treatment plans. Her approach centers on making sure patients understand their options before making any decisions.

Dr. Lambert brings years of experience with the specific challenges peritoneal mesothelioma patients face. This webinar gives attendees a chance to hear from someone who deals with these cases every day.

Dr. Zachary Brown, Surgical Oncologist and Peritoneal Mesothelioma Specialist

Dr. Zachary Brown is a surgical oncologist at NYU Langone Health whose practice focuses on peritoneal cancers, including peritoneal mesothelioma. He cares about making sure patients and families understand what they’re considering before they commit to a treatment path.

Dr. Brown combines technical expertise with a communication style that makes complex surgical concepts easier to understand. Attendees can expect clear, honest explanations of topics important them.

Karen Selby, RN and Board-Certified Patient Advocate

Karen Selby has worked with mesothelioma patients and their families at The Mesothelioma Center for more than 15 years. As a registered nurse and board-certified Patient Advocate, her oncology background shapes the way she helps people navigate treatment decisions, access care and make sense of information that can feel overwhelming at first. 

Karen brings that same approach to this webinar. She helps patients and families make sense of complex medical information and figure out what to do next. 

Who Will Benefit From Attending?

This webinar is a good fit for anyone connected to a peritoneal mesothelioma diagnosis. That includes patients at any point in their treatment journey, from those who just received a diagnosis to those actively preparing for surgery. 

It’s equally valuable for caregivers, family members and friends who want to better understand what surgery involves and how to support someone considering it. If you’re trying to figure out what surgery could mean for you or for someone you care about, this conversation is for you.

Sign Up for Free 

Registering is free and only takes a minute. The insights you’ll gain can shape how you approach your care and the conversations you have with your medical team. The Mesothelioma Center looks forward to seeing you on April 29. 

Free Webinar

Surgery for Peritoneal Mesothelioma

Watch our free webinar, and hear from top surgical oncologists about how surgery may be effective for people with peritoneal mesothelioma.

Get Your Free Recording

Can’t Join Live?

Everyone who registers gets access to the full recording, so you can watch on your own schedule. You can also find our previous webinars on demand at our webinar hub, covering topics from diagnosis and treatment to financial help with medical costs.

The post Free Webinar: Expert Answers on Peritoneal Mesothelioma Surgery appeared first on Mesothelioma Center - Vital Services for Cancer Patients & Families.

Statements I’ve Heard in Counseling

• “I don’t feel like doing anything I used to enjoy even when I’m not feeling sick.” 
• “I can’t motivate myself to do anything fun.”
• “I cry at the drop of a hat.” 
• “I’m sleeping a lot more than I used to.”

Experiencing symptoms of depression when you have mesothelioma is common even if you’ve never had depression before. While there are no studies that specifically report the incidence of depression in mesothelioma patients, it’s reasonable to apply the statistics on the prevalence of depression in all cancers, which are between 20 to 50%, to people with mesothelioma. Research indicates patients with more advanced cancer or who have a poorer prognosis have a higher incidence of depression. 

Are These Symptoms Mesothelioma or Depression?

Some of the diagnostic symptoms of depression are similar to mesothelioma symptoms or side effects of its treatment. And some depressive symptoms are “negative symptoms” such as lack of appetite, poor motivation or social withdrawal. Symptoms like these can be “invisible” because it’s harder to notice the lack of something more than the presence of something uncomfortable.

Symptoms to Look Out for

• Fatigue/lack of energy
• Low motivation
• No interest in pleasurable activities
• Not enough sleep or too much sleep
• Poor concentration
• Sadness or tearfulness
• Social isolation
• Thinking about death or suicide
• Thoughts of hopelessness/worthlessness
• Weight loss or weight gain

If you have had several of these symptoms for more than 2 weeks, it’s a good idea to discuss this with your physician or a mental health professional. They can determine if your symptoms meet the criteria for a diagnosis of depression. They may also make some treatment recommendations depending on the type and severity of your symptoms.

Where to Seek Help for Mesothelioma-Related Depression

Depression is quite treatable with a variety of modalities. Unfortunately, depression tends to be underdiagnosed and therefore undertreated.  However, there are several great options to treat depression.

Antidepressant medication is typically helpful to reduce the symptoms of depression although it can take several weeks before the benefits of the medication are felt. Primary care physicians, medical oncologists and psychiatrists may prescribe antidepressants for people with mesothelioma. 

Seeking counseling with a mental health professional who has expertise in working with cancer patients is another good option for getting correctly diagnosed with depression. It can also help with learning strategies to manage the symptoms.Peer support in an individual setting or support group can be a good adjunct to the above treatment options if a person with mesothelioma is struggling with depression. Connecting with others who are experiencing the same diagnosis can help people feel less alone and can validate many of the challenging thoughts and feelings that mesothelioma patients can experience.

The post How I Help Mesothelioma Patients Identify Depression appeared first on Mesothelioma Center - Vital Services for Cancer Patients & Families.

His only treatment beyond regular abdominal drainage has been a partial omentectomy, which kept him in the hospital for 12 days. Since then, he’s seen measurable improvements and developed a clear sense of how he wants to spend his energy.

He’s been intentional about conserving it since his mesothelioma diagnosis. He hired a pool company, a handyman and a lawn service, not out of necessity, but because he’d rather spend the money than spend the energy on tasks that pull him away from teaching and writing.

Help came from other directions too, often without him asking. Friends and neighbors showed up with food, cut his lawn and cleaned his pool. Michael tried not to lean too heavily on anyone, but the support meant more than he expected.

He carried another kind of weight through much of this. Just under a year ago, Michael lost his wife, Nancy, to ALS, commonly known as Lou Gehrig’s disease. She had been his partner through his diagnosis and treatment, even as her own health was declining. 

Working With Chicken Soup for the Soul’s Co-Creator on His Own Book

Michael is also finishing a book: Finding Joy in Daily Living: 72 Simple Ways to Create Lasting Peace in Your Life. Each of the 72 chapters covers a single concept, with words like acceptance, perception and persistence. He describes it as a guide built from his own life, not a set of instructions for anyone else’s.

He’s working with Jack Canfield, the co-author of the Chicken Soup for the Soul series and his marketing team. They’ve been coaching Michael on how to shape the book for a wide audience.

The book doesn’t mention his cancer diagnosis specifically. It draws from the same values that have guided Michael’s life for decades. “I’m not telling people what to do,” he explains. “I’m sharing with you things that allowed me to be at 65 years old completely happy, carefree and unstressed.” He hopes the book finds the people who need it most. Michael expects to release the book in a couple of months.

Teaching golf and putting the final touches on his book are just part of a bigger mission for Michael. He sums up his future goals in one honest answer: “To reach as many people on the planet as possible who are suffering and to help them to suffer less.” 

Teaching Through a Diagnosis

Michael has taught golf for nearly 40 years and a cancer diagnosis didn’t change that. He was back giving lessons within 3 weeks of leaving the hospital, teaching from a chair. At his busiest before his diagnosis, he taught close to 100 lessons a month. Now he teaches around 45 to 50, not because he can’t do more, but because he’s choosing to spend his energy differently.

He approaches teaching the way he approaches everything: with simplicity and genuine care. “I’m not there to win friends, but I win friends by being real,” he says. His Google reviews back that up, with nearly all 5 stars from students who keep coming back.

Those students have been one of the most meaningful parts of his recovery. Many of them were the people who showed up at his home with groceries and homemade soup, helped with chores and, in one case, sent him an unsolicited $500 check. “I have great clients,” Michael beams.

Diet, Movement and Daily Discipline

Michael has eaten a vegetarian diet for 26 years. He tells us it’s one of the foundations of his health. His approach to food started with raw foods, then gradually expanded to include cooked vegetarian meals. He says he pays close attention to what he puts in his body.
Diet and nutrition play an important role in helping people with mesothelioma stay well nourished and strong during treatment. It can be challenging for patients to maintain a healthy weight. Michael tells us he came out of the hospital at 116 pounds and has hovered between 122 and 124 pounds. With his attention to nutrition, he was able to gain 2 pounds since his most recent procedure to drain fluid buildup known as ascites or peritoneal effusion.

Physical activity for Michael looks different now than it did before his diagnosis and surgery. He spent several months in physical therapy to rehabilitate his left shoulder, which had limited his range of motion for years. He doesn’t do heavy physical activity, but he hasn’t let that stop him from teaching. He continues offering his knowledge of golf as often as he wants and says his energy continues to improve.

Faith, Meditation and Letting Go

Meditation has been central to Michael’s recovery from surgery and living with mesothelioma. For him, meditation isn’t separate from his spiritual life. It’s an expression of it. He describes it as “focusing on God” and quieting everything else. He shares that for him his “belief system is huge.” 

Michael says he doesn’t experience anxiety anymore and attributes that to acceptance. He explains, “If you accept what is in every moment of every day, you start to let go of anxiety.”

This philosophy shapes how he interacts with everyone around him. He shared a recent example. When a beverage cart attendant at his golf course mentioned her mother had stage 4 cancer, Michael didn’t hesitate to share his experience and point her toward resources. Helping others has become as much a part of his recovery as anything else.

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What Caregivers Have Shared With Me

• “I wish there was more I could do to help my spouse feel better.”
• “I feel guilty when I want some time to myself to do the things I need to do.”
• “Sometimes I get impatient or cranky with my [loved one with mesothelioma].” 
• “I get stressed because I can’t get everything done and then I feel like a failure.”

Family members sometimes expect that their commitment as a mesothelioma caregiver is a reflection of how much they love the patient. For example: “I should demonstrate my love for them through the level of caregiving I provide. So, I must go to all the medical appointments, prepare every meal and do all the errands as a reflection of that love.” 

They tell me they sometimes feel like a failure when they can’t do everything. Equating our love for someone with mesothelioma and how much caregiving we feel obligated to do sets us up for exhaustion. 

The Physical and Emotional Challenges of Caregiving

Caregivers of mesothelioma patients may not have much experience with how physically and emotionally challenging being a caregiver can be. Having unrealistic expectations of our own capabilities and of caregiving challenges is very common.

Helping a loved one bathe, dress, move around the house or get in and out of a car requires strength and stamina. Caregivers may also find themselves providing wound care after mesothelioma surgery or helping loved ones through the side effects of chemo or radiation, which require patience, attention and energy. Managing medications, operating home medical devices and keeping up with household tasks are significant demands on both physical and mental energy.

Family caregivers don’t always allow themselves to clock out or take a break. Professional caregivers such as doctors and nurses etc. work their shift but then they can go home and decompress and take care of their own needs. Family caregivers may struggle with asking for help or accept that they can’t be on-call 24/7.

Recognizing and Challenging Caregiver Guilt 

One of the ways I help caregivers who are feeling guilty is to ask: “What exactly have you done wrong to feel so guilty?”  Typically, guilt isn’t an accurate emotion because we can feel guilt while having done nothing wrong in objective terms. 

If someone feels guilty leaving their partner with mesothelioma for a few hours to get a haircut and meet a friend for lunch, I encourage them to ask: “What’s so wrong with taking a break for a few hours to look after your own needs?” I ask caregivers to consider: “If the roles were reversed, would you want your loved one who is a caregiver to you to feel guilty if they took a break to recharge or look after their own needs?” This type of role reversal question is usually helpful to challenge those guilty feelings that caregivers may have.

Feeling overwhelmed and irritable is common when we feel stressed as a caregiver. These are understandable human emotions. But it’s important that we take care of ourselves physically and emotionally to allow us to continue to function. While it can feel counterintuitive as a caregiver to take time for our own care, it’s vital that caregivers prioritize their own physical, social and emotional needs sometimes. 

Caregiving a loved one with mesothelioma can be a rewarding yet difficult role to take on. Feeling guilty about how we’re doing as caregivers can make us even more stressed. So it’s important to recognize when we’re feeling guilty and to challenge those negative thoughts and give ourselves some grace. 

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He received a diagnosis of peritoneal mesothelioma in April 2024 after a medical emergency landed him in the hospital. Doctors also found a femoral hernia, bowel obstruction and intestinal infection during that visit. It was a lot to take in at once, but Michael says his mindset never wavered.

He credits 3 things for his condition today: meditation, a vegetarian diet he’s followed for 26 years and a strong belief system. “If I told a person one thing, I’d say you better start talking about how you’re healing, not about how sick you are,” he tells us. For Michael, that’s not just a feel-good phrase, but how he lives every single day.

From Emergency Room to Mesothelioma Diagnosis

Michael’s path to a mesothelioma diagnosis started in a way no one could have anticipated. A caregiver for his wife, Nancy, who had ALS and needed around-the-clock help. Then they both contracted COVID-19 and Michael’s condition became serious.

“The pains in my stomach were off the charts,” he recalls. He called 911 and paramedics rushed both Nancy and Michael to the emergency room. What started as a suspected hernia quickly turned into something much more serious. Surgeons went in to repair the hernia and found cancer.

He spent 12 days in the hospital recovering from a partial omentectomy. Doctors removed as much of the tumor as they could see, repaired the hernia and addressed the other complications they found. 

His pathology report determined his mesothelioma cell type is epithelioid, which doctors typically consider the most treatable form of mesothelioma. It’s also the most common cell type. 

Michael left the hospital weighing just 116 pounds. Within 3 weeks he was back to teaching golf from a chair, but teaching nonetheless.

Tracking Peritoneal Effusions and Seeing Progress

A major complication of peritoneal mesothelioma is the buildup of fluid in the abdomen, a condition called ascites or peritoneal effusions. Michael says he didn’t notice fluid buildup until about a year after his diagnosis, when his stomach kept getting bigger and bigger. 

“I kept researching what it was,” he shares. He’s had the fluid drained 9 times since then, with each session removing roughly 5 to 7 liters. More recently, Michael has seen a meaningful drop in his fluid levels. 

His last 3 drainage sessions pulled far less fluid than before, around 4 to 5 liters each time. He also gained 2 pounds after his most recent drainage, something that hadn’t happened before. For Michael, these changes feel like real, measurable progress.

Taking a Non-Traditional Approach to Treatment

Following his omenectomy, two of Michael’s oncologists recommended chemotherapy and tumor-removing surgery with HIPEC. After looking up the details of HIPEC, however, he chose not to go forward with these additional therapies.

Cancer treatment is a deeply personal choice. Mesothelioma experts note surgery with HIPEC can extend survival 5 or more years for about 50% of peritoneal patients. Without mesothelioma treatment, those with advanced disease typically survive 6 to 8 months. But each patient must weigh benefits like improved prognosis against potential side effects and recovery time for themselves.

Michael decided the approach that felt right for him wasn’t conventional therapies. He’s been taking a liquid supplement known as Protocel or Cancell since January 2026. 

The National Cancer Institute warns on its Protocel page, “Cancell/Cantron/Protocel is a mixture of common chemicals, none of which is known to be effective in treating any type of cancer. No animal study or human study of Cancell/Cantron/Protocel has been published in a peer-reviewed scientific journal to show that it is safe or effective in treating cancer. Cancell/Cantron/Protocel is not approved by the FDA for use in the United States as a treatment for a disease. There is a permanent injunction against distribution.”

Michael says he’s pleased with the results he’s seeing. He tells us he began tracking specific changes after he started the supplement. He noticed his ascites fluid levels dropped, his energy improved and he gained weight for the first time since his diagnosis.

Michael tells us he’s careful about how he introduces Protocel to others. He recommends talking to a doctor before starting any supplement, particularly when taking other medications. Anyone considering any complementary or alternative therapies should always consult a medical team first.

Michael’s Message for Others Coping With Mesothelioma

Michael says he doesn’t sugarcoat his advice and he doesn’t like telling people what to do. He recommends anyone coping with mesothelioma to: “Have a strong belief and a desire that you have a purpose for wanting to live, and then do everything in your power to find the information that feels right for you.” 

He says that means learning as much as possible about mesothelioma, asking questions and not defaulting to fear. He says his biggest message for fellow mesothelioma survivors is about how they frame the way they talk and think about it. He tells people to talk about healing, not sickness, and to focus on what they’re choosing, not what’s happening to them. 

“You have far more control when you understand that your decisions are the one thing you control,” he shares. It’s not just a motto for Michael. It’s why he’s still on the golf course, still writing his book and still helping people.

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The Abdominal Cancers Alliance is a patient-focused nonprofit. It connects patients and caregivers to information, resources and specialists for advanced gastrointestinal and gynecologic cancers. The ACA launched just a year and a half ago under the leadership of Dr. Armando Sardi, a respected surgical oncologist and pioneer in the field of peritoneal surface malignancies.

As part of medical outreach since 2013, Jose Ortiz is a VA-accredited claims agent and dedicated member of our Patient Advocate team. He also belongs to several oncology organizations, including the American Society of Clinical Oncology and the International Association for the Study of Lung Cancer. His vast experience in the mesothelioma space makes him a natural fit for this new role.

What the Partner Advisory Committee Does

The Partner Advisory Committee will gather representatives of various organizations quarterly to share unique perspectives, set priorities and improve education for people with abdominal cancers. Each organization brings a different area of expertise to the table. Jose will represent The Mesothelioma Center and focus on the needs of people diagnosed with peritoneal mesothelioma.

“The goal is to bring coordination to the work that we’re all doing in the peritoneal space,” Jose tells us. “That means improving awareness of the realities of these advanced cancers and improving navigation to specialized care.” He says these collaborative efforts add up to something meaningful for people diagnosed with mesothelioma.

Other organizations joining the committee include PMP Pals Inc., Appendix Cancer Pseudomyxoma Peritonei Research Foundation and the National Ovarian Cancer Coalition. Together, the group aims to cover the full range of abdominal cancers the ACA serves. The committee will also review the ACA’s current work and offer guidance on how to better serve patients and their families. 

ACA’s Living Proof Event

The ACA will host its Living Proof event on Friday, April 24, 2026, at Crown Hall at Guilford Hall Brewery in Baltimore, Maryland. Mesothelioma Center contributor and peritoneal mesothelioma survivor Tamron Little will take the stage to share her personal experiences and insights.

Doctors diagnosed Tamron with peritoneal mesothelioma at age 21, and she has spent years advocating for fellow patients and shares her story to inspire hope in others. Her participation in the Living Proof event reflects the shared mission of The Mesothelioma Center and the ACA to show patients that life after diagnosis is possible.

Living Proof centers on abdominal cancer survivors who share their stories and showcase their talents on stage. The event aims to change a harmful misconception: that a diagnosis of a rare or advanced abdominal cancer isn’t survivable. The ACA believes that sharing these stories saves lives. The evening runs from 7:00 to 9:30 p.m. and features dinner, beverages and performances.

The Mesothelioma Center’s Relationship With the ACA

The Mesothelioma Center has worked closely with the ACA for more than a year. We’re the first and only mesothelioma organization to actively collaborate with the ACA since its founding. That work has included sponsoring the ACA’s golf tournament, creating peritoneal mesothelioma content for their website and holding regular calls with ACA leadership.

Jose and the medical outreach team have also worked to connect surgical oncologists to the ACA, encouraging them to offer it as a resource with The Mesothelioma Center. The two organizations share a similar mission: helping patients find the specialists and support they need. Jose says the relationship with the ACA reflects the trust The Mesothelioma Center has built in the abdominal cancer community.

The ACA’s website and Asbestos.com both feature peritoneal mesothelioma specialists, offering resources to find experienced physicians and connect with support. Jose says having that overlap strengthens the network available to people facing a peritoneal mesothelioma diagnosis.

What This Means for Mesothelioma Patients

An invitation to join this committee recognizes The Mesothelioma Center’s role in the peritoneal cancer community. Jose says it’s also a chance to make sure mesothelioma patients don’t get lost in conversations focused on more common abdominal cancers. His presence on the committee keeps peritoneal mesothelioma front and center.

“It’s an honor to have been asked to serve on this committee,” Jose shares. “I look forward to helping represent The Mesothelioma Center on behalf of patients and helping create ways to eliminate barriers to care for patients and their loved ones.” That commitment reflects the same mission that has guided The Mesothelioma Center’s work for more than a decade.

The committee will hold its first meeting in May 2026. Jose says he’s ready to bring the perspective of mesothelioma patients and their families to every conversation the group has.

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