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.

Lori, Volunteer Mentor | @loribmt | Nov 5, 2021

In reply to @rose53 "How do we open a patient pormal to see lab results. Thank you." + (show)

Hi Rose, Easy peasy to set up your Mayo Clinic patient portal. Here’s the link:
https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Which Mayo Campus are you visiting?

rose53 | @rose53 | Nov 5, 2021

Sorry. Portal

rose53 | @rose53 | Nov 5, 2021

How do we open a patient pormal to see lab results. Thank you.

mountain009 | @mountain009 | Oct 23, 2021

In reply to @gingerw "@mountain009 There is a discussion under the Blood Cancers and Disorders group for mm and other..." + (show)

thank you Ginger..

mountain009 | @mountain009 | Oct 23, 2021

In reply to @colleenyoung "Hi Mountain009, happy to share survivor stories with you. What type of cancer do you have?" + (show)

Thank you Colleen, ..........i have multiple myeloma. please advise. will share whats going on with my doctors.

Ginger, Volunteer Mentor | @gingerw | Oct 20, 2021

In reply to @kasmpeterman "He started it in July for stage 4 esophageal cancer using keytruda and Ram/Taxol. We drive..." + (show)

Good luck on the clinical trial! I hope he receives progress towards healing. That is a long drive for you, and can be overwhelming. How are you holding up in all this?
Ginger

kasmpeterman | @kasmpeterman | Oct 19, 2021

In reply to @gingerw "@kasmpeterman I see you have been a member for a while, but this is your first..." + (show)

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..

Ginger, Volunteer Mentor | @gingerw | Oct 19, 2021

In reply to @kasmpeterman "Husband is on clinical trial in Rochester so we are there each week. I have a..." + (show)

@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

kasmpeterman | @kasmpeterman | Oct 19, 2021

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.