Patient Advocacy Stories: Helping People Access Supportive Care

Vicki reached out not long after her husband was diagnosed with peritoneal mesothelioma. He was losing so much weight that she was looking for practical ways to help him eat, so she requested our nutrition guide. I’ve been talking with Vicki for about five months now, checking in at least every three weeks and staying in touch as her husband’s needs and their questions have changed.

The nutrition guide gave Vicki a place to start, and now that her husband is in treatment, he’s eating again. I’ve also shared our full information packet and webinars with them so they have more resources to turn to as questions come up. Her husband decided to receive treatment from his local oncologist, a choice that worked for their situation.

Addressing Concerns About the Cost of Mesothelioma Care

Vicki’s husband is in his 60s and had been working before his diagnosis, but he’s no longer able to, leaving Vicki as the household’s only source of income. She was trying to manage that financial pressure while caring for her husband and figuring out what to do next. 

Vicki wanted to know what resources might be available to her family and what steps might make sense given everything they were facing. We talked through her questions and what she hoped to make possible for her husband. 

I connected her with lawyers who could explain how pursuing financial help might work in their situation, answer her questions and help her weigh her options. I wanted her to feel she had someone in her corner as she worked through these decisions, not another set of hurdles to manage on her own.

Vicki first came to me looking for help with her husband’s nutrition. Since then, our conversations have grown to include treatment, the financial strain of losing his income and questions about legal options. I want Vicki to know she can keep coming to me as new concerns arise, whether she needs information, help weighing her options or simply someone to talk things through with.

Kevin reached out to us about a year or two after his diagnosis. By then he’d already been through chemotherapy and surgery and was starting his third round of treatment. He was looking for other people who understood what he was living with.

We talked through his options, and I helped him schedule with a few oncologists for a second opinion on that third treatment.

Finding and Giving Support

But what really brought him into our world was our mesothelioma support group. He joined and never really left. He shows up for it every time, and he’s become one of the people newer patients lean on the most because he’s been through exactly what they’re going through and isn’t afraid to talk about it.

Kevin is one of the people I’d point to if someone asked me what this support group is actually for. It’s not just information. It’s someone who’s already lived it, telling you that you can get through it too.

Betty reached out to us in 2025, not long after she was diagnosed with peritoneal mesothelioma. She wanted help finding a doctor through our Doctor Match program, so I started looking at UVA Augusta for her care.

Betty decided she wanted to stay local instead, and that was her call to make. She’s been on immunotherapy for about a year. She’s not a candidate for surgery, and immunotherapy caused a flare of her rheumatoid arthritis at one point, so she had to pause treatment for a while before starting back up.

Checking In With Betty

Betty doesn’t have a family caregiver. She lives alone in Virginia, and when we talk about what she needs, she hasn’t wanted to pursue financial assistance. What she’s needed is someone checking in.

So I call her regularly, just to see how she’s doing. When we hit the one-year mark since her diagnosis, I called to celebrate it with her. She didn’t end up going with the doctor I first connected her to, and that’s fine. My job isn’t to make sure patients follow the plan I suggest. It’s to make sure they have what they need to make their own decisions and someone to call when they want to talk something through.

I’m still in regular contact with Betty today. I check in, answer her questions and make sure she has the resources she needs.

At 72, Donna was facing pleural mesothelioma, a cancer most often linked to asbestos exposure. Her work history included factory jobs in Florida and Indiana, and she had also regularly used talcum powder. Those details provide important context for her story as she dealt with her diagnosis and looked for information to help her make decisions about her care.

Talc and asbestos can occur close together in the earth, and mining can contaminate talc with asbestos. When manufacturers use contaminated talc in consumer products, people who use those products may face asbestos exposure. Because asbestos exposure is the primary cause of mesothelioma, contamination in talc products has raised concerns about the potential risks to consumers.

Donna’s friend Janie, a nurse, first reached out to The Mesothelioma Center on Donna’s behalf. Donna already had a treatment plan in place, but Janie and Donna’s sister encouraged her to connect with us. I wanted Donna to have information and support she could turn to as she managed the many concerns that can come with a mesothelioma diagnosis.

Finding Information and Connection

In the weeks that followed, Donna sought information about clinical trials and nutrition. She also expressed interest in connecting with others living with mesothelioma. She signed up for our Clinical Trials 101 webinar and was happy to receive the recording so she could access the information whenever she wanted. She also requested our nutrition guide.

Donna recently joined our mesothelioma support group, giving her another opportunity to connect with people who could relate to what she was going through. I wanted her to have access to different kinds of support, from practical information she could revisit when questions came up to conversations with others who understood the challenges of living with mesothelioma.

She’s a retired schoolteacher in her 80s, living alone in upstate New York. Everything is a long drive from where she is, and she doesn’t have anyone who can take her to appointments far away. She has friends and neighbors, but they’re older too, dealing with their own health.

She first reached out just wanting our mesothelioma packet, specifically the nutrition guide, and I sent that to her. She’s fiercely independent and not someone who readily accepts help. I worried about how she’d manage if her needs changed, especially with so few people nearby who could help her get to appointments or manage day-to-day needs.

Planning for Future Care

When we first talked about financial help, she told me she didn’t need it. She had no one to provide for or leave money to, so it wasn’t something she’d given much thought to. 

More recently, though, she’s started thinking about what she’ll need if her condition progresses and how she’ll pay for care while continuing to live independently. We talked through those concerns and what she might be able to put in place for the future.

What she wants most is to fund an in-home caregiver so she can keep her independence, along with rides to get her to appointments and wherever else she needs to go. I connected her with people who could help her explore financial options for the in-home care and transportation she’d need to remain independent. I wanted her to have a chance to plan ahead and make choices about her future care while she still could.

I call her regularly, and we talk about what she’s facing, what she may need next and how I can help her prepare. I want her to know she doesn’t have to give up her independence to accept help planning for the future.

A family called me not long ago looking for hospice information for their father. He’d been in treatment with a local oncologist, but they’d reached the point where it was time to think about hospice instead.

I got everyone on a Zoom call together. I explained that two doctors have to sign off before hospice care can start, and I walked them through the difference between in-treatment hospice, which tends to be short-term, and in-home hospice, which is usually the better fit for a longer-term need. Some families just prefer having their loved one at home too. They’d had a bad experience with a facility during a previous relative’s hospice care, so that mattered to them.

Choosing the Right Hospice Care

I gave them a list of questions to ask any hospice provider they were considering: what type of care they offer, what certifications and licenses their staff hold, how often their doctors and nurses turn over and how they approach pain management. Hospice care is about pain management and comfort, sometimes antibiotics for an infection or other ways to ease discomfort, but it isn’t curative treatment. Their father had already done chemo, and at his age, it wasn’t helping him anymore.

They chose 24/7 in-home hospice so their father could receive care in the comfort of his own home. I also helped the family explore financial options for covering the cost of that care. Insurance may cover some expenses, but the remaining costs can be a real concern for families. I wanted them to have a better sense of what financial help might be available so they could focus on keeping their father comfortable and making the most of their time together.

Berlinda was a science teacher in New Jersey and a minister to her congregation. When I first spoke with her in July 2024, I was struck by how positive she was. That’s unusual for someone who just found out they have a rare, aggressive cancer, but it was who she was from the very first call, and it stayed that way.

We stayed in regular contact for about a year. There was some early confusion about her exact diagnosis, since pleural and pericardial mesothelioma share overlapping symptoms and pericardial is exceptionally rare, but that got sorted out, and she moved forward with immunotherapy at Mayo Clinic in Jacksonville.

Sharing Her Mesothelioma Story

Berlinda wanted to share what she was going through with other survivors and with anyone trying to understand mesothelioma better, so she took part in a series of survivor stories with us. She talked about her diagnosis and her treatment on her own podcast too, and she was open about all of it with her congregation.

Berlinda passed away. She spent the time she had helping other people understand this disease and facing it with more grace than most people manage on an ordinary day. I think about her positivity often, and about how she chose to use her story to help the people who would come after her.