Patient Advocacy Stories: Matching People With Mesothelioma Specialists

Steve found out he had peritoneal mesothelioma in December 2025. He went in for gallbladder surgery, and his surgeon found the cancer in the process. He’s in his 60s, fit, a runner, and still doesn’t have symptoms beyond some mild pain.

He was anxious when we first started talking, so the first thing we worked on together was getting him in front of an experienced mesothelioma specialist through our Doctor Match program. Once that was settled, we started talking about getting him to the one-year mark since diagnosis. He’s excited about the idea of sharing a survivor story once he gets there, and we talk regularly about where he’s at.

Treatment and Financial Concerns

He was worried about medical bills too, so we’ve been working through his financial assistance options. The cancer is in his small intestine, and he wasn’t considered a surgery candidate at first. He’s on chemo and immunotherapy now, and if the cancer responds the way we’re hoping, cytoreductive surgery with HIPEC is still a possibility for him. That’s the surgery he wants.

Steve’s an assistant principal, and his wife teaches. Because she still has to work, he drives himself two hours each way to his appointments. I think about that every time we talk.

Linda reached out to us through our website. On our first call, I learned about her diagnosis, and I put together an introductory packet for her. We scheduled a follow-up call to talk through her next doctor’s appointment.

Linda had already decided she wanted surgery. There was no talking her out of it. But her surgery kept getting delayed because her facility wanted a peer review first to make sure surgery would actually benefit her. I helped her get a second opinion at Stanford so she could understand exactly what the procedure would involve and decide for herself if she still wanted to go through with it. After meeting with the oncologist there, she was sure. She went back to her original surgeon and told him she understood this could be fatal, that the surgery was complicated and that she wanted to do it anyway.

Keeping Linda’s Family Informed

By that point Linda was overwhelmed, and she put me in touch with her two daughters. Between the three of us, we made sure she had current information on her treatment options the whole way through, what to expect from chemotherapy, what to expect from immunotherapy, everything. I gave her my cell number, and her daughters and I texted and emailed constantly. I became something like a lifeline for a family that was clearly struggling under the weight of what was happening to their mom.

A mesothelioma diagnosis is overwhelming for the patient, but it’s just as hard on the people who love them. Linda’s daughters didn’t want to lose their mom, and everything they found online only made that fear worse. All I could do was make sure they had what they needed to make the decisions that were theirs to make, together.

Ariel was 33 when she was diagnosed with peritoneal mesothelioma and facing a 17-hour surgery. When she first got on the phone with me, what she needed most was someone to tell her the truth: This diagnosis is serious, but there’s real reason for hope, and I knew exactly where to find it.

Connecting Ariel With Another Survivor

I walked her through her diagnosis and what the surgery would involve. I also connected her with a fellow patient who’d been diagnosed with the same disease at the same age and is now a long-term survivor years out from her own treatment. Talking with someone who’d been through it gave Ariel someone who understood what she was facing.

She came through her surgery, and I still check in with her today. When we talk, I’m reminded of why this work matters. Ariel didn’t need me to have all the answers. She needed to know she had someone in her corner.

Kim was a full-time nurse with two kids and a husband, and she didn’t have room in her life to manage a mesothelioma diagnosis on top of everything else. So her best friend Jeanette decided to carry some of that weight for her and called me herself.

Staying in Touch

Jeanette and I worked through what Kim needed in that first conversation, and it’s what let Kim get the surgery she needed. Four years later, we’re still in touch. Kim and Jeanette remind me of my own best friends, the two of them looking out for each other, making me laugh every time we talk.

I still check in to see how Kim’s doing. We still talk, and she and Jeanette still make me laugh every time.

Diana was diagnosed with pleural mesothelioma around age 74. She’d grown up in the UK and was living in the US, working as a flight attendant, when we first spoke. She knew exactly what she wanted: surgery. Not every doctor would have considered her a candidate at her age, but she’d made up her mind.

I got her in to see a specialist at Dana-Farber Cancer Institute and Good Samaritan Medical Center in Boston, and another at Memorial Sloan Kettering in New York. She wanted to see everyone, and after meeting with both, she had two different treatment plans in front of her, one more aggressive than the other, both involving surgery. She chose to move forward with Memorial Sloan Kettering’s plan. She took the train home to Cincinnati with her adult daughter after her surgery, and later flew back on her own for a follow-up visit. Not long after that, she was flying back and forth to the UK to see her adult son.

Staying Connected With Diana

I kept in touch with Diana for years. Helping someone doesn’t end when the immediate need is met. We stayed in touch, and I got to hear about what was happening in her life.

Somewhere along the way, I started talking to Diana about connecting with other survivors. When someone’s newly diagnosed, we’ll sometimes acknowledge that even though we’re mesothelioma experts, that’s not the same as talking to someone who has actually lived through it. So we’ll ask if they’d like to speak with a fellow patient who’s had the treatment they’re considering, especially after they’ve gotten a second opinion and are weighing their options. It can be reassuring to hear from someone who’s already been there.

Keeping in touch with Diana over the years, I asked if she’d be comfortable with me sharing her name and number with someone else going through it. She said yes, give my name and number to whoever you want. So we matched new patients to her as someone who’d already lived it.

Brandon was 23 when he was diagnosed with pleural mesothelioma. His wife found us through an ad, then filled out a few more forms on our site over the next several days, one for Doctor Match and one for a nutrition guide.

I got in touch with her to understand what they needed most. Their biggest priority right away was finding a specialist with real experience treating this rare disease. Missy, who runs our Medical Outreach team, stepped in to help coordinate consultations with the University of Oklahoma and Baylor. She worked with Oklahoma Health to get a referral sent to Baylor, and she and a navigator got Oklahoma Medicare to cover Brandon’s care there. Around that same time, we also connected the family with a law firm we trust.

Helping Brandon Through His Clinical Trial

Just this week, Brandon reached back out. His insurance stopped covering the ancillary tests and lab work his clinical trial requires, so we’re working through what comes next.

Brandon’s case is a good example of what our team can do for patients. I’m his advocate, and Missy’s team helped get him in front of the right doctors as quickly as possible. We’re still working with him as new needs come up.

Carla called us by mistake. She’d just been diagnosed with mesothelioma that same day and was searching online for the doctor who’d diagnosed her. I picked up the phone, and when I told her she had the wrong number, she broke down. She told me what had just happened to her.

I told her there was a reason she’d called and that I could help her find who she was looking for. We ended up talking for a long time about our organization, what we do and how we could help. Her doctor had recommended a surgical consultation close to home, but with mesothelioma being as rare as it is, a second opinion from a specialist matters. I connected with Missy to get her in with a specialist about an hour from her, near Orlando, and stayed in touch with her through everything that came after.

Staying in Touch Through Treatment

Her treatment path hasn’t been simple. Surgery was scheduled, then canceled, then rescheduled, then canceled again, and she ended up starting immunotherapy instead. Along the way, I told her to call me for anything, any time, and gave her my cell number, my email and my work line. Sometimes that means real medical questions. Sometimes it’s Carla asking if she should wear a button-down shirt or the one that pulls over her head. I don’t mind either kind of call.

I got to meet Carla in person last year, near Leesburg where she lives. She’s an artist, and she showed me pieces she’s painted and is proud of. Her husband Tony is a hoot. The difference in her between that visit and where she is now is real. She didn’t have good color back then. Today she looks remarkable.

Mesothelioma isn’t curable, and most of the patients I work with don’t get a story this good. Carla’s isn’t over, and she’ll have more bumps ahead. But she’s a phenom, a mom, a grandma, a great-grandma, a wife, an artist and one of the people I’m proudest to have in my corner.