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

Financial burden is a serious side effect of cancer treatment, one that doesn't often get openly discussed. So thanks for this topic! I'm sure my story is one OF a million others. So far I've been blessed with only having to endure the income loss that comes from unexpectedly early "retirement" and Cobra insurance premiums after being diagnosed with a cancer that at this time is not curable, but thank God is manageable. But soon to be 65, I'm looking into Medicare and I'm very concerned about spiraling costs. Of special concern is post transplant meds, and sadly, my husband has just received a cancer diagnosis too. Our future is uncertain on so many levels. My heart goes out to everyone facing these battles, and paying emotionally, physically, and financially.

@katyrae Your story is one of so many, as you said. But, it does help us to hear these other stories, and how people have coped. My husband had a transplant 5 years ago, and under his old employer's insurance, ongoing medications were a piece of cake. Moving to Medicare, he got sticker shock! I was able to gently remind him, he never understood how good he had it under the group insurance! When I first became eligible for Medicare, an advocate with the Area Agency on Aging encouraged me to think to the future, and get a PPO supplemental plan plus encompassing prescription plan. I followed her sage advice, and have seen my health issues multiply [failing kidneys plus blood cancer] but costs are still manageable at this time.
Ginger

excellent idea.........................also survival stories would be greatly appreciated. thanks

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

Thanks Ginger! Yes I have met with a Medicare broker and she is directing me to include Supplemental coverage, but she said she needed to do more research before we finalize because even with prescription coverage she has a client with outrageous post transplant drug costs. 😳 I'm pretty nervous after hearing that. 😬
Thank you for sharing part of your story and the recommendation. I wish you well on your health and financial journeys ❤🙏🏼🙏🏼🙏🏼

@katyrae @gingerw , yep, there are as many financial toxicity stories as there are cancer journeys. Here is a snapshot of mine. Don’t get me wrong, I am incredibly blessed to have decent insurance thanks to my husbands lengthy military service. I was in my 30s, strong as an ox, working 16 hours a day building up my business and planning for an easier financial time. Bam, I have aggressive cancer, I was already at financial ruin when my husband got multiple myeloma 6 years later. His savings and retirement gave us the ability to get him two stem cell transplant and continuing care for his myeloma. We are blessed to be alive but I have long since given up any sense of hope for financial security.

I appreciate your husband's service, both of your health struggles, and in spite of this heartbreaking story, I especially appreciate your your acknowledgement of blessings. May your heart continue to lift you up as you navigate these challenges 🙏🏼❤

mutiple myloma....recently diagnosed a few months ago. would like to know how others have been coping and adjusting to the new lifestyle. also miracles that have transpired the lives. is there a group that connects on a reguar basis for M M................thanks Colleen. Have a great weekend.

@mountain009 There is a discussion under the Blood Cancers and Disorders group for mm and other related topics you might find interesting. https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

And, welcome to Mayo Clinic Connect! There are a lot of people here, we each have our own stories, but we are so similar. I am an active mm patient. What has your doctor decided is the best treatment plan for you?
Ginger

That is an excellent idea for educational program.

I had decent insurance at the time, an employee retiree insurance plan. Though expensive, it had good coverage once I got through initial problems with pre approvals. And, Mayo was in network so did not have to worry about finding a provider in network. I do not think I am candidate for interview because I would never say I was in hardship. I had savings to cover the deductibles until I reached my out of pocket max for year. One year I hit my max out of pocket in January.

But the dealing with insurance companies was almost as stressful as the original cancer diagnosis.

Few things most frustrating:
- Pre approval for some tests, insurance originally denied MRIs. I had both insurance and Mayo's pre approval phone number on speed dial. Being stuck between providers orders and insurance company had me in tears many nights.
- Keeping track of visits / bills / EOBs / etc…. I spent lot time doing spreadsheets to track expenses.
- Now I am on Medicare and as previous members have mentioned the drugs costs are outrages compared to previous plans. I have learned hints from Mayo Connect on alternative to get drugs covered like GoodRx.

Beside patients, might be helpful for this education program to have someone from Mayo billing and insurance company also be interviewed to provide advice.

Laurie