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 group.

Yes I had total body radiation for Hodgkins in 1981, heart attack in 2014. Learned a lot since then about all the damage caused by radiation but not much before.

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@inali

Your story is so similar to mine. My Hodgkin's treatment was 1978-79. I also have a miracle baby. Never ever had any idea my heart was so damaged until I sought a diagnosis and treatment for dyspnea beginning in 2016. After multiple tests and multiple doctors in various locations, I finally received a diagnosis of radiation induced heart disease at Mayo last October. Since then, there have been treatment options to determine. I had triple valve surgery May 18 and still hospitalized.

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Hi Inali, after a long absence from this group due to other things, I finally saw my primary care Dr. and have a plan for moving forwards re: my RIHD. I see that you DID go ahead and have the triple valve surgery 5/18 and were still hospitalized as of 6/11. I hope that you are doing better now and might even be home by this time. Know this was a difficult decision. You are courageous. Please keep me/us updated with how you're doing. Marti

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@martijwis

Hi Inali, after a long absence from this group due to other things, I finally saw my primary care Dr. and have a plan for moving forwards re: my RIHD. I see that you DID go ahead and have the triple valve surgery 5/18 and were still hospitalized as of 6/11. I hope that you are doing better now and might even be home by this time. Know this was a difficult decision. You are courageous. Please keep me/us updated with how you're doing. Marti

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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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@martijwis

Hi again Inali, as I read more about CAD and RIHD, I learn more. It seems my article about the "bypass various blood vessels" did NOT seem a good fit for what you are experiencing. So, I apologize for sending that post reply to you a day or so ago.//Starting over and my questions for you, being much further down this road than me. It seems my RIHD/CAD will get worse. I'm trying to figure out some in advance what I'll agree to and not agree to from Drs based on long-term results. I'd hate to have to wait until a full-blown heart attack to do something. But, at least then, it sounds like the Coronary Arteries (CAs) would be intact enough for Bypass surgery. That's where I felt heartened (Pun?) about "bypass various blood vessels" article. But, for you with your bad stent experience, further heart surgery and/or procedures is not for you. I DO hear you and know that you know your own body best, of course. I am just scared about the stent option being a bad one for me too and hurt my surgery chances down the line. SO, here are my questions for you if you'd be so kind as to consider answering them: 1. How long ago did you have your stents inserted? (It sounds like the most recent medication laced stents have less side effects and cause less inflammation) . 2. Did you feel pain because of the stent(s) in coronary arteries? 3. Did you have a heart attack before having the stent(s) inserted? 4. Would you advise people to avoid or shun having stents put in, period, due to your own experiences? 5. When arteries are severely clogged and Drs. suggest angioplasty and stents, are there ALTERNATIVES you know of that I could request instead? I would appreciate anything you could tell me since I'm feeling very anxious about my future too, off and on (soon, I'll head out the door for a walk which will at least relax me some). Hope your day is good. Marti

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Hi Marti,
The stents did not prove to be an impediment to my recent open heart surgery. Since my RCA is 100% blocked, the surgeons hoped to be able to do a CABG while in there. While they harvested a vein from my left leg in preparation for the bypass, in the end they were unable to do it. Apparently there was nothing to bypass to. The vessels are either too small or too occluded. Anyway, my point is that – in my case at least – the existence of stents seemed to have no bearing on the surgery.

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@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-overview
https://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-overview
https://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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