Cancer Treatment Induced Heart Disease

Posted by inali @inali, Oct 10, 2019

This is my most recent diagnosis, which apparently is the underlying cause of my: congestive heart failure, pulmonary hypertension, tricuspid-mitral-aortic valve problems, and goodness knows what other conditions. I have further testing at Mayo next week to help determine the extent of the damage, and whether or not I’m a candidate for valve replacement/repair. I had radiation therapy for cancer 40 years ago and have had periodic shortness of breath episodes over the years, no cause for which has been identified until now. How frustrating to learn what’s going on so late in the game. I’ve been searching for research articles but haven’t found much so far that even a highly educated layperson like me can understand. Is anyone dealing with the same or similar issues?

I’m in the process of getting my affairs in order’ (which we should all do whether a health scare or not), because this sounds like a death sentence to me. I feel like I’m suddenly in a race to dispose of my possessions and downsize my life before the grim reaper grabs me. At the same time, I’m desperate to maintain a positive attitude and find a kernel of hope in this situation.

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

@inali

After two weeks at Mayo, I was discharged home. Within 3 days I was struggling to breathe and wound up admitted to my local hospital for another 9 days. I’m finally home and improving every day. There were two surgeons who performed my 8.5 hour surgery during which my aortic and mitral valves were replaced and my tricuspid was repaired. Recovery has been a bumpy road, but I think I’m finally on the mend. Just don’t ask me yet if it was worth it 😊

I chose tissue valves rather than mechanical, and must take Coumadin for three months. Apparently the risk of blood clots following this type of surgery is significant. My greatest challenge lately is finding a dosage which keeps my INR in the 2-3 range. Turns out that is not easy - at least not for my body.

I have some arrhythmia that didn’t exist before the surgery, but other than that I’m told that my heart’s in good shape and my valves are working beautifully. The hope is that over time the arrhythmia will resolve on its own. I look forward to the day when I feel better than I did before the surgery. For now I’m happy to have progressed enough to shower, dress, and toilet on my own without assistance. A lengthy hospital stay definitely destroys your dignity. It is good - if nothing else - to once again feel like a grown-up.

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Hi @inali. You’ve definitely had a go of it. Wishing you a speedy recovery. God bless.

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Hello, my name is Amy, I had full body mantle radiation for Hodgkin’s Lymphoma in 1993 in Duluth, MN. I have developed high blood pressure, dyspnea with exertion and chest pain. My cardiologist says I’m “too young to have heart trouble and have no risk factors”. I am living in the Pacific Northwest and trying to find a doctor that understands the risk of Radiation Induced Cardiac Disease. Medications are helping but I’m afraid there is more going on than they think. Any insight would be appreciated…

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@amymichc

Hello, my name is Amy, I had full body mantle radiation for Hodgkin’s Lymphoma in 1993 in Duluth, MN. I have developed high blood pressure, dyspnea with exertion and chest pain. My cardiologist says I’m “too young to have heart trouble and have no risk factors”. I am living in the Pacific Northwest and trying to find a doctor that understands the risk of Radiation Induced Cardiac Disease. Medications are helping but I’m afraid there is more going on than they think. Any insight would be appreciated…

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Good morning, Amy, While our cancer treatments are life saving they can come with some pretty serious side effects of their own. Chemo and radiation treatments can both have an impact on our hearts. So it’s a bit of a surprise that your cardiologist is flippant about your concerns.
It’s important to listen to your gut instincts and at least get a second opinion. Do you have the ability to switch doctors? Is there a larger teaching hospital you could try?

I realize you’ve already seen this discussion by another members regarding radiation induced heart disease and hopefully read the entire thread. As you can see, you’re not alone.
I’ve also found some other sites discussing your concerns and posted those below.

https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/https://my.clevelandclinic.org/health/diseases/17409-radiation-heart-disease-overviewhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3159113/

You said medication is helping. What tests have you had run to rule out heart related issues?

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@amymichc

Hello, my name is Amy, I had full body mantle radiation for Hodgkin’s Lymphoma in 1993 in Duluth, MN. I have developed high blood pressure, dyspnea with exertion and chest pain. My cardiologist says I’m “too young to have heart trouble and have no risk factors”. I am living in the Pacific Northwest and trying to find a doctor that understands the risk of Radiation Induced Cardiac Disease. Medications are helping but I’m afraid there is more going on than they think. Any insight would be appreciated…

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@amymichc Welcome to Mayo Clinic Connect.
Living in the Pacific Northwest, I am not sure how far you may be from Oregon Health and Science University [OHSU] in Portland area, a great teaching hospital. It is ranked Number 1, and I know several people who have gone there. My husband travels the 4 hours to go there annually for his kidney transplant checkup; we live in southern Oregon.

In the Seattle area is Harborview Medical Center, part of the University of Washington system [but being in mid-Seattle, it is a real pain to access] My sister worked there as an RN for 35+ years, and her commute was always a nightmare!

If you feel you need to get a second opinion, then follow your gut! Cardiac issues know no age range, is my thought. I recall a specialist telling me the same thing a couple decades ago about a condition I have, and my response was to cock my head over to one side and tell him. "Well, I just proved you wrong!"

I hope you will return if you have nay more questions, and let me know what you decide.
Ginger

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I was lucky enough to have one of the creators of the Calcium Score, Arthur Agoston, as my cardiologist for several years. At the time, I was dealing with a recently discovered genetic marker for cardiac problems and a family history of early death by heart disease. He might be the best doctor I've ever seen. And he's personable and likes to explain things. But what most charmed me is his respect for the body's innate propensity to heal given the right tools. He once described how the body, in a sense, creates its own non-surgical by-pass procedures when it needs to and how surgery just mimics that. He decided early in his career to focus on treating heart issues non-surgically whenever possible.

The Agotston Calcium Score found a major threat a friend's cardiologist and other testing missed and might have saved his life. Given my chronically-highish cholesterol and intolerance of statins my then CAC score of 0 (now 4) and good Endopat results were very reassuring. Dr. A. explained the result was due to blood work showed a disproportionate percentage of larger-sized, non-sticky cholesterol...enough of a benefit to likely outweigh the bad genetics. I'm glad that the calcium score is gaining recognition. It's east, fast and non-invasive and non-stressful.

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Yes I have a similar background and am struggling with heart issues, and had to have a total mastectomy due to two precancerous duct cells found late 2020. Would like to hear more about your challenges. Hard to maneuver this alone

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@loribmt

Good morning, Amy, While our cancer treatments are life saving they can come with some pretty serious side effects of their own. Chemo and radiation treatments can both have an impact on our hearts. So it’s a bit of a surprise that your cardiologist is flippant about your concerns.
It’s important to listen to your gut instincts and at least get a second opinion. Do you have the ability to switch doctors? Is there a larger teaching hospital you could try?

I realize you’ve already seen this discussion by another members regarding radiation induced heart disease and hopefully read the entire thread. As you can see, you’re not alone.
I’ve also found some other sites discussing your concerns and posted those below.

https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/https://my.clevelandclinic.org/health/diseases/17409-radiation-heart-disease-overviewhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3159113/

You said medication is helping. What tests have you had run to rule out heart related issues?

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Lori, thank you for the links and the encouragement. I have had 3 echos over the past few years that seem to show a progressive increase in leakage from all heart valves (trace to mild still). Was just in the hospital for chest pain and had a Lexi scan, ECG and was put on a nitro drip. Imdur and Metoprolol are now controlling the chest pain. I am taking SL nitro PRN. The cardiologist wanted to do an angiogram but didn't feel that the benefits outweigh the risk as I do not have any other risk factors for CAD. I am close to OHSU so will look into referral if my symptoms continue to dictate/limit my quality of life.

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@gingerw

@amymichc Welcome to Mayo Clinic Connect.
Living in the Pacific Northwest, I am not sure how far you may be from Oregon Health and Science University [OHSU] in Portland area, a great teaching hospital. It is ranked Number 1, and I know several people who have gone there. My husband travels the 4 hours to go there annually for his kidney transplant checkup; we live in southern Oregon.

In the Seattle area is Harborview Medical Center, part of the University of Washington system [but being in mid-Seattle, it is a real pain to access] My sister worked there as an RN for 35+ years, and her commute was always a nightmare!

If you feel you need to get a second opinion, then follow your gut! Cardiac issues know no age range, is my thought. I recall a specialist telling me the same thing a couple decades ago about a condition I have, and my response was to cock my head over to one side and tell him. "Well, I just proved you wrong!"

I hope you will return if you have nay more questions, and let me know what you decide.
Ginger

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Ginger,
I have looked into a referral to OHSU, as I know they have Oncology Cardiologists. Fortunately, it is only about an hour from where I live. I believe I am probably just beginning my cardiac journey. Right now I have the cardiologists a little baffled. It's weird to be on medication that is helping but they don't know what is causing the symptoms.

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Hi. I have radiation heart disease. Replaced my aortic valve 4 years ago (TAVR) and soon will need to replace the mitral valve. This will be a major operation, and a completely different procedure from what I did previously. I am seeking the names of the cardiac surgeons and general cardiologists that have the most experience with radiation heart disease. Would like to arrange for a consultation and consider treatment options.

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@alex1962

Hi. I have radiation heart disease. Replaced my aortic valve 4 years ago (TAVR) and soon will need to replace the mitral valve. This will be a major operation, and a completely different procedure from what I did previously. I am seeking the names of the cardiac surgeons and general cardiologists that have the most experience with radiation heart disease. Would like to arrange for a consultation and consider treatment options.

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Welcome @alex1962. Am I understanding correctly that you have heart disease as a result of radiation treatments for cancer? If yes, you may be interested in this related discussion:
- Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/

It sounds like you are looking for information about how to request an appointment at Mayo Clinic. Here's the contact information to call or submit a request online. You can self-refer or have your doctor refer you. http://mayocl.in/1mtmR63

Mayo Clinic offers a program to address heart problems associated with cancer treatment called cardio-oncology. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

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