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.

@martijwis

Hi Inali, I've been mostly away from the computer lately, so just saw your response today. It is so good that you are having your upcoming surgery at Mayo. And yes, your focus and positivity will be of great help to you while you are in the competent hands of the Mayo surgeons. I saw on another post that you enjoy things like reading and art. These are sustaining you before and will after your surgery as well as your positive family contacts.

Yes, I know it can be difficult finding lodging in Rochester. Hope you can find good places at a decent price for all of you.

Thanks for your kind words on my still beginning research into my condition. Like for you, this will undoubtedly be a long journey. I have much to learn and try (re: meds and first contacts with a cardiologist–may choose a Mayo one–it could very much be worth the drive!)

Please let us all know here how you are doing when you can after your surgery. Wishing you WELL!

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Hi Marti,
I have been spreading the message regarding the potential for heart damage as a result of cancer treatment. In just the last week I’ve encountered two women with recently diagnosed breast cancer. I gently raised the issue with them and encouraged them to talk to their oncologist about exploring ways to minimize heart damage. It’s a tough topic to even consider when dealing with such a diagnosis. You just want to survive the cancer. To have another worry thrust on you at such a vulnerable time feels intrusive. But while I regret sharing info that’s less than happy news, the fact that I wish I’d been forewarned when going through treatment keeps me telling the tale.

I so appreciate you sharing your story. I’m letting folks know about the CCS also. Please continue to share any interesting articles you find and I’ll do the same.

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@inali

Hi Marti,
I have been spreading the message regarding the potential for heart damage as a result of cancer treatment. In just the last week I’ve encountered two women with recently diagnosed breast cancer. I gently raised the issue with them and encouraged them to talk to their oncologist about exploring ways to minimize heart damage. It’s a tough topic to even consider when dealing with such a diagnosis. You just want to survive the cancer. To have another worry thrust on you at such a vulnerable time feels intrusive. But while I regret sharing info that’s less than happy news, the fact that I wish I’d been forewarned when going through treatment keeps me telling the tale.

I so appreciate you sharing your story. I’m letting folks know about the CCS also. Please continue to share any interesting articles you find and I’ll do the same.

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Hi Inali, Yes, it is SO important to get the word out about RIHD and CCS. I also wish I'd been forewarned about the need to be monitored more closely and probably put on preventative meds sooner after lengthy radiation treatment. So, I'm glad you are also talking to others, as tactfully as possible, about discussing this risk w/ their Drs. before, during, and after radiation.

Know you have much, much to think about re: your upcoming scheduled surgery. Hope you continue to find more info. to help you be confident in your decisions, whatever they may be.

Thinking of you during this time. Please continue to let us know how you're doing when it feels right for you.

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@penn1023

Is the CCS the same as an angiogram? If you have a bad CCS would it show the same on angiogram?

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Hi Penn, No a CCS is not the same as an angiogram. I did learn that. CCS is non-invasive and shows images of Coronary Calcium and plaque in your arteries. You then are given a Coronary Calcium score that is an objective measure of how far along your "hardening of the arteries" is. An angiogram, I believe focuses more on images of blood flow through your coronary vessels. It does not, to my knowledge, specifically show the Coronary Calcium/plaque pictures or quantify by a score your level of "clogged arteries". I refreshed my memory on angiograms by skimming a Wikipedia article on what it does and doesn't do. The CCS is considered by most Drs. to be the best predictor of heart attack risk according to numerous articles I have read.

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Ok I had a clean angiogram. I will ask for a CCS.

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@inali

Hi Colleen,
Thanks so much for posting the link Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/. I had no idea that Mayo had a cardio-oncology clinic. I have a question for you: I have open heart valve surgery scheduled for next month at Mayo. The research studies and articles I’ve read leave me feeling pretty hopeless about (1) my survival, and (2) my resulting quality of life should I survive the surgery. Speaking with my doc and valve surgeons is likewise leaving me with little reason for hope. I’m considering skipping surgery and just letting nature take its course. Problem is, I’d like to better understand what that choice would me. Perhaps the Cardio-Oncology clinic physicians could help illuminate that area of darkness for me. What do you think? Would they likely have the knowledge and experience to help me understand what that choice would mean? I have questions like: with no surgical intervention, am I likely to be around in a year? Two years?

I’m looking for your advice as I assume you understand the nature of care provided by the clinic. I don’t want to waste their time or mine if such medical ‘forecasting’ is beyond the scope of what they do.

Thanks so much, Colleen!

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@inali, my apologies for the tardy reply. I recommend that you ask for a consult with the cardio-oncology clinic. You obviously have unresolved questions, or at least the need for more information to make an informed choice that is right for you. I'm not completely apprised of the care provided by the cardio-oncology clinic. But I do know that Mayo specialists work together as a multidisciplinary team of doctors. In this case oncologists and cardiologists. Please do call and inquire here http://mayocl.in/1mtmR63 or through the patient portal.

I'd appreciate your letting the group know what you find out.

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I was put on Sutent (a targeted chemo drug) after I was diagnosed with renal cell cancer in 2008. It was rough, but Sutent was considered the gold standard for RCC. I had a minor heart attack in 2014 and the doctors attributed it to Sutent. I was immediately taken off the Sutent, which concerned me at first because the drug was keeping my cancer in check. But my RCC has been in remission since 2014, even without the Sutent. I do, however, get regular CT-Scans and MRIs to make sure the cancer has not come back. Susan54

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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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@amandaburnett

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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