The Financial Burden of Cancer: Are you willing to share your story?

Posted by Colleen Young, Connect Director @colleenyoung, Oct 14, 2021

Over the last 25 years, major advancements in cancer diagnostics and treatment have led to significant improvements in clinical outcomes and survival rates. However, the cost of diagnostic procedures, therapy, including chemotherapy, targeted agents, and immunotherapy, as well as the long-term costs throughout survivorship mean people facing a cancer diagnosis also face substantial financial burden. This is sometimes called financial toxicity.

Mayo Clinic would like to interview 5-6 people who are willing to share their story about the financial burden of cancer. Your experience can help other people going through the expense of cancer treatment.

We are looking for real stories of people who have struggled with the financial burden of:
- mounting paperwork
- looming bills
- confusing financial terminology
- gaps in insurance coverage
- financial fears and insecurity

Do you need to be a Mayo Clinic patient?
No! These stories will support an education program and should not be reflective of any particular clinic or hospital.

How will the stories be used?
Parts of your experience may be used to provide real-life stories in an education program to help newly diagnosed cancer patients.

How can you participate?
- You can participate by phone, in writing or in person. You choose:
- Interview by phone.
- Provide your story in writing via email.
- If you live close to Rochester, Minnesota or Phoenix, Arizona, you might be invited to come to a Mayo Clinic video studio to share your story on camera.
- If you live anywhere else, you might be invited to record an audio version of your story via phone or Zoom.
- Your story may be used in a script to be read by someone else.

If you would like to participate, please post a comment below or private message me at @colleenyoung. Share some of your experience below.

Have you ever been confused by health insurance or billing terminology?
Have you ever wondered, “what’s a deductible, what’s an out-of-pocket maximum?
Have you ever been fearful for your financial security because of cancer treatment costs?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

makatak47 | @makatak47 | Jun 7, 2022

The telephone co. here stopped selling international phone cards. Just another difficulty in the 3rd world. I will be landing in SF on Sept.3 with nowhere to go. I lost my home in a divorce in 2012. I want to get to Alta Bates Hospital in Berkeley. I'm trying to find a place to stay, while I make my appointments.
Sincerely,
Jim

msfawn | @msfawn | Oct 24, 2022

If you are still seeking help for this, feel free to contact me.

Colleen Young, Connect Director | @colleenyoung | Oct 25, 2022

In reply to @msfawn "If you are still seeking help for this, feel free to contact me." + (show)

Thank @msfawn and welcome. The interview phase of the project has been completed. However, helpful tips about managing the financial burden of cancer are always welcome for other members of the community.

What experience and tips might you offer to others dealing with cancer and its financial impact?

elwooodsdad | @elwooodsdad | Apr 17, 2023

I am several months into B Cell lymphoma treatment. R-Chop, six rounds. Scan after 3 rounds showed nearly clear. Scan after round 6 was not as positive. CAR T seems to be on my horizon, and requires a long relocation, plus the build up of co-pays yet to be paid. I have (I believe) a pending request for Mayo, Rochester, and have requested my medical records be faxed to Mayo. Also have a meeting with the Stephenson Cancer Center in Oklahoma City on 5/1 to discuss suitability to endure CAR T. I’m 75, and just caught up in this tsunami of sickness, fear trying to take care of myself. I really wish to live, just cannot get the logistics worked out. Guidance?

Chris, Volunteer Mentor | @auntieoakley | Apr 17, 2023

In reply to @elwooodsdad "I am several months into B Cell lymphoma treatment. R-Chop, six rounds. Scan after 3 rounds..." + (show)

I cannot tell you what to do, but I can tell you what we did. My husband has multiple myeloma, and he had two stem cell transplants at Mayo. This included months of conditioning chemo at home and the long relocation to Rochester for transplant.
It was financially devastating, and like you say “a tsunami of sickness”.
We paid all the co pays that we’re most important to his continued treatment first, then we paid the others. We also got on a few payment plans until we could get past the worst of it. Paying 10.00 a month on a bill until we were finished with the travel portion of his program. Then we paid of the bill when we were home again.
I am going to say, my financial life went up in flames along with my credit rating during this time. I was still paying off bills that kept us afloat during my cancer and those ended up in default and although finally paid…….well you know how it goes. I would do it all again to have the resulting 13 years and counting with my husband.
Sometimes I just have to keep putting one foot in front of the other until we get to a better place again.
Do you have people in your life that can help with the physical logistics of caring for your home while you get treatment? Can you start planning for your trip now by setting things up at home and giving yourself a sense of moving forward?

elwooodsdad | @elwooodsdad | Apr 17, 2023

Thanks for your response. This is overwhelming, as you know. Right now, I am unsure of what next treatment protocols, where to have them done, and exceptionally distressed with the initial chemo. I will bite the bullet, and handle the financial mess. I am not doing this for myself, but my wife deserves my best efforts. Just waiting on the what next. I am undecided as to where. I’m 75, and was a surgical patient at Mayo at age 10, so I am biased. I am blessed with a good wife, a good dog, and need to get my ducks in a row. Thank you for your time and experience. Pleased that you prevailed.

Colleen Young, Connect Director | @colleenyoung | Apr 30, 2023

In reply to @elwooodsdad "Thanks for your response. This is overwhelming, as you know. Right now, I am unsure of..." + (show)

@elwooodsdad, as you prepare for CAR-T therapy, I encourage you to join the discussion in the support dedicated to CAR-T here:
- CAR-T Cell Therapy Support Group https://connect.mayoclinic.org/group/car-t-cell-therapy/

You're not alone. Other members who have had CAR-T can share their experiences and tips.

elwooodsdad | @elwooodsdad | Apr 30, 2023

In reply to @colleenyoung "@elwooodsdad, as you prepare for CAR-T therapy, I encourage you to join the discussion in the..." + (show)

We have a 10 year old gentleman miniature schnauzer who we will not put in a kennel. He likes walks and can take care of his needs. He will be in a large crate and taken for exercise several times daily. We are in Tulsa and Anne & Henry Zarrow have been generous benefactors. Would this issue be best addressed by the Mayo social work group? It will be awhile before we are able to structure this care.