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.

I have had many issues from the full body mantel radiation that I received in 1981 to stop Hodgkins Disease. The Survivor Clinic at the U of MN provided me with information the had regarding other items that I need to watch for in my life due to the radiation. It was terribly depressing. Unfortunately I received this after my widow maker heart attack so I had no chance to be aware. Heart attack was determined to be from a combination of radiation and stress from my extremely stressful job. None of my current doctors ever thought I was a heart attack candidate otherwise as my arteries were totally clear.

If you would like to talk, let me know. I’ve had many other obstacles from the damage too, but still here!

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That’s terrible news. Can you tell us generally what things radiation caused? Glad you are still here.

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@jocelynk

I have had many issues from the full body mantel radiation that I received in 1981 to stop Hodgkins Disease. The Survivor Clinic at the U of MN provided me with information the had regarding other items that I need to watch for in my life due to the radiation. It was terribly depressing. Unfortunately I received this after my widow maker heart attack so I had no chance to be aware. Heart attack was determined to be from a combination of radiation and stress from my extremely stressful job. None of my current doctors ever thought I was a heart attack candidate otherwise as my arteries were totally clear.

If you would like to talk, let me know. I’ve had many other obstacles from the damage too, but still here!

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Welcome @jocelynk. I agree with @penn1023 and would be interested in what conditions and side effects your doctor advised you to look out for. Are any of them currently on your radar? You stated that your radiation was in 1981, how long after did you have your heart attack?

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@amandaa

Welcome @jocelynk. I agree with @penn1023 and would be interested in what conditions and side effects your doctor advised you to look out for. Are any of them currently on your radar? You stated that your radiation was in 1981, how long after did you have your heart attack?

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I’ll give you some items I’ve been dealing with since the radiation....very susceptible to pneumonia and bronchitis due to lung damage, spleen was removed so need to be cautious of viruses and bacterial infections. Heart attack was in 2014. U of MN told me 5 other people with same background of receiving this great amount of radiation back when I did, recently had unexplained heart attacks also. Again, really would have been nice to be aware that they had this info. earlier. The letter outlining items to watch for was long, basically from head to toe, any cancers that could occur were to be watched out for by frequent annual testing (example, breast MRI and mammogram annually from now on), more colonoscopies, etc. Been self isolating since March due to COVID. My doctors don’t want me to take any chances.

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This full body mantal radiation treatment for Hodgkins was stopped shortly after my timing (1981). Thank God they knew how to stop it for me but I’m also happy they realized the issues with it and changed. I was also told that I’d never have children due to the radiation (this is a whole other story). I have a beautiful 30 year old daughter who the U if MN calls a “Miracle Baby”.

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@jocelynk

This full body mantal radiation treatment for Hodgkins was stopped shortly after my timing (1981). Thank God they knew how to stop it for me but I’m also happy they realized the issues with it and changed. I was also told that I’d never have children due to the radiation (this is a whole other story). I have a beautiful 30 year old daughter who the U if MN calls a “Miracle Baby”.

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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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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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