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

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.

I moved to a new state three years ago to be closer to family after a very serious illness (abdominal abscess). During that hospitalization in my home state, an ultrasound showed a small tumor in my right breast. I had surgery and arrangements were made for follow-up care and treatment in my new state. I went in for my first appointment at the new venue, a hospital/cancer care center in a rural area, 45-100 miles from major medical facilities. At the cancer care center, one of the first interviews I had was with the financial office. Fortunately, I have Medicare and a good supplemental plan. But, out of curiosity, I asked what would happen if I just had Medicare and could not cover the balance. I was told - very nonchalantly - that they couldn't treat me. This is an area with a high poverty rate. I left wondering about what happens to those seniors who can't afford the co-pays.

I also second Laurie's comment about keeping all papers, bills, etc. Several years ago, I had a Dexascan to check for osteoporosis. During the pre-scan billing/financial interview, I was told that the cost would be $525.00 and that I was responsible for 20%. I paid that amount before I had the scan. Several weeks later, I received a bill for $2,100 for the scan. I called the hospital and kept getting the run-around. No, it was not the radiologist who read the scan (I paid that separate bill). No, I had no other tests. Etc., etc., etc. Finally, I spoke to the supervisor of the collections department. I told her that I had a copy of the agreement that stated that I was responsible for 20% of the $525.00 cost, that I had paid that cost, and that I would be more than happy to send her copies of the form I signed and the canceled check. The moral of the story: keep your paperwork! And, although it may be difficult and frustrating, be your own advocate!

REPLY

Medical costs also depend on where you live. Massachusetts, for example, has subsidized health insurance coverage for everyone. Also, there are many states that have expanded Medicaid to cover many with low income.

REPLY
@astaingegerdm

Medical costs also depend on where you live. Massachusetts, for example, has subsidized health insurance coverage for everyone. Also, there are many states that have expanded Medicaid to cover many with low income.

Jump to this post

Is this a state Medicaid or state health insurance exchange? I bet they could help people who don’t even know about this.

REPLY
@auntieoakley

Is this a state Medicaid or state health insurance exchange? I bet they could help people who don’t even know about this.

Jump to this post

The states can accept Federal money to expand Medicaid to include low income people.
In SC, where I live, the state rejected the Federal money. SC is very poor state- so many people don’t have health insurance.

REPLY
@colleenyoung

Hi Mountain009, happy to share survivor stories with you. What type of cancer do you have?

Jump to this post

Hello Colleen....thanks! recently diagnosed so i am anxious to learn more about MM. i was told that thee is no cure at the moment. I would like to hear what others have been through the process and what they did to stay motivated.
thanks

REPLY

I live in NJ where Medicaid, Horizon NJ Health is paying all of my bills. I am very fortunate.

REPLY
@pampurr

I live in NJ where Medicaid, Horizon NJ Health is paying all of my bills. I am very fortunate.

Jump to this post

I am very happy that you are getting plenty of help. Cancer is hard enough without the bills.

REPLY

Husband is on clinical trial in Rochester so we are there each week. I have a spreadsheet that I haven't updated since June with a lot of expenses -- and we have great insurance. We have been had a situation where the chemo treatment was rejected, bills that show up that are in error for thousands of dollars, and mountains and mountains of paperwork and expenses. Plus staying employed is a challenge to pay for it. I'm still working but my husband had to retire. The stress of stage 4 cancer is one thing but adding to it with a significant financial burden and working with not so friendly insurance companies makes it unbearable. Glad you are doing this study.

REPLY
@kasmpeterman

Husband is on clinical trial in Rochester so we are there each week. I have a spreadsheet that I haven't updated since June with a lot of expenses -- and we have great insurance. We have been had a situation where the chemo treatment was rejected, bills that show up that are in error for thousands of dollars, and mountains and mountains of paperwork and expenses. Plus staying employed is a challenge to pay for it. I'm still working but my husband had to retire. The stress of stage 4 cancer is one thing but adding to it with a significant financial burden and working with not so friendly insurance companies makes it unbearable. Glad you are doing this study.

Jump to this post

@kasmpeterman I see you have been a member for a while, but this is your first posting to Mayo Clinic Connect. So, welcome! Thank you for telling us about your journey, which probably has so many nodding their head, too, in agreement. The toll it takes in so many forms can be rough on everyone, patient and family members alike.

I am interested to know more about the clinical trial your husband is participating in, if you care to share anything? Where is he at in that clinical trial?
Ginger

REPLY
@gingerw

@kasmpeterman I see you have been a member for a while, but this is your first posting to Mayo Clinic Connect. So, welcome! Thank you for telling us about your journey, which probably has so many nodding their head, too, in agreement. The toll it takes in so many forms can be rough on everyone, patient and family members alike.

I am interested to know more about the clinical trial your husband is participating in, if you care to share anything? Where is he at in that clinical trial?
Ginger

Jump to this post

He started it in July for stage 4 esophageal cancer using keytruda and Ram/Taxol. We drive down every week for treatments..4.5 hr drive..

REPLY
Please sign in or register to post a reply.