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.

So sorry to hear this news. I have heard that certain chemo can cause CHF. Did you have chemo too? I have some heart troubles too so I know what you mean about getting affairs in order. It’s a good thing to do as nobody (even healthy folks) knows their expiration date. I hope you get good news about getting repairs.

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@penn1023

So sorry to hear this news. I have heard that certain chemo can cause CHF. Did you have chemo too? I have some heart troubles too so I know what you mean about getting affairs in order. It’s a good thing to do as nobody (even healthy folks) knows their expiration date. I hope you get good news about getting repairs.

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Thanks for your kind words. I did not have chemo, but have also heard of it’s heart damaging outcomes. I guess when your life is in jeopardy from cancer, even knowing heart damage is in your future would not keep you from having the treatment 😔

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Hi Inali, sorry to hear about your radiation induced heart disease. I am in the early stages of getting diagnosed w/ moderate to high risk (of heart attack or stroke) coronary artery disease (and maybe more). I underwent left breast cancer lumpectomy radiation treatment over 6 years ago. And now, via getting a Coronary Calcium Scan, find out I have serious problems with my coronary arteries. In searching for info. on possible radiation induced heart disease for myself, I came not only upon Mayo but also upon "Cleveland Clinic". I found their website also has very good info on "Radiation Induced Heart Disease". I can't post links here but if you do a web search on the two terms (in one search) I put in quotation marks, it should take you to the Cleveland Clinic's Radiation Induced Heart Disease page. Very best wishes to you in your treatment. I share your concern that is a very alarming thing to have happen and am also thinking of getting my affairs in better order. I'm just now beginning this whole process. Thanks for writing and sharing so we others know we're not alone.

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@martijwis

Hi Inali, sorry to hear about your radiation induced heart disease. I am in the early stages of getting diagnosed w/ moderate to high risk (of heart attack or stroke) coronary artery disease (and maybe more). I underwent left breast cancer lumpectomy radiation treatment over 6 years ago. And now, via getting a Coronary Calcium Scan, find out I have serious problems with my coronary arteries. In searching for info. on possible radiation induced heart disease for myself, I came not only upon Mayo but also upon "Cleveland Clinic". I found their website also has very good info on "Radiation Induced Heart Disease". I can't post links here but if you do a web search on the two terms (in one search) I put in quotation marks, it should take you to the Cleveland Clinic's Radiation Induced Heart Disease page. Very best wishes to you in your treatment. I share your concern that is a very alarming thing to have happen and am also thinking of getting my affairs in better order. I'm just now beginning this whole process. Thanks for writing and sharing so we others know we're not alone.

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Hi martijwis,
I too have recently been diagnosed with CAD. Seems to be part of the RIHD collection of negative effects. I had three stents put in the right coronary artery (RCA) less than two years ago, and in October I learned the artery is now 100% occluded. The term used by the doc when reviewing my tests was a very matter of fact “the artery disappeared”. That totally freaked me out! It can’t be a good thing to have an artery with good blood flow (thanks to the stents) just disappear, right? He grabbed me off the ceiling and explained that there were other ‘channels’ that formed and were feeding blood to that part of the heart. I’m hoping that’s not a temporary thing. At any rate, from one of the research articles at Cleveland Clinic (thanks for the tip), I learned that those with RIHD are more prone to restenosis than most. I’m learning more about this issue every day. There definitely needs to be more research into early intervention strategies that slow or stop the progression prior to a person becoming symptomatic. Discovering this condition exists 40 years after radiation is at least 35 years later than necessary.

Keep in touch and let me know how your treatment progresses.

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@martijwis

Hi Inali, sorry to hear about your radiation induced heart disease. I am in the early stages of getting diagnosed w/ moderate to high risk (of heart attack or stroke) coronary artery disease (and maybe more). I underwent left breast cancer lumpectomy radiation treatment over 6 years ago. And now, via getting a Coronary Calcium Scan, find out I have serious problems with my coronary arteries. In searching for info. on possible radiation induced heart disease for myself, I came not only upon Mayo but also upon "Cleveland Clinic". I found their website also has very good info on "Radiation Induced Heart Disease". I can't post links here but if you do a web search on the two terms (in one search) I put in quotation marks, it should take you to the Cleveland Clinic's Radiation Induced Heart Disease page. Very best wishes to you in your treatment. I share your concern that is a very alarming thing to have happen and am also thinking of getting my affairs in better order. I'm just now beginning this whole process. Thanks for writing and sharing so we others know we're not alone.

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@martijwis, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Radiation Heart Disease https://my.clevelandclinic.org/departments/heart/depts/radiation-heart-disease-clinic

Marti, it is alarming to discover that treatment that helped one disease led to the creation of another. How was your heart disease risk discovered? We're they monitoring you for this possibility since radiation treatments?

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Hi Colleen. Just reading this articles and information about heart disease. My question is this what if you have heart disease even before you had radiation for lung cancer. I had a heart attack a few years before being diagnosed with lung cancer and copd. I go to mayo in April for my ct scans so is this something I should be talking about with my radialogist. I had radiation on both my upper left and right lungs. I

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@colleenyoung

@martijwis, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Radiation Heart Disease https://my.clevelandclinic.org/departments/heart/depts/radiation-heart-disease-clinic

Marti, it is alarming to discover that treatment that helped one disease led to the creation of another. How was your heart disease risk discovered? We're they monitoring you for this possibility since radiation treatments?

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Hi Colleen and thank you for posting my link for the Cleveland Clinic's info. on Radiation Induced Heart Disease (RIHD). Yes, Colleen, I was shocked to find out the quite advanced state of calcification in my coronary arteries just this past week. This is how I found out my current quite high risk for significant heart disease/heart attack.....
My husband had a couple of high risk factors for heart disease so his Dr. in private practice recommended he get the Coronary Calcium Scan (CCS) at a local hospital here in our Twin Cities/western WI area for $100 out-of-pocket. Insurance will not pay, as you are probably aware. My husband's score on this test was low normal. Later, my husband and I were talking about how my own risk factors--Higher cholesterol--LDL, NON-HDL, and triglycerides, etc . These had been high-ish for years and we thought it'd be appropriate for me to ask my new primary care "Dr. M" for a referral and have the CCS test also. As you probably know, there is a great reluctance on the part of many medical associations and many Drs. to recommend the CCS to their patients--this is well documented and there has been, I found, been at least one documentary "The Widowmaker" available for streaming on Amazon, for example, about Possible Reasons for this reluctance. I DO know that Mayo Clinic DOES support CCS for people with high risks like me so this is in NO way any criticism of the Mayo Clinic, which I dearly love and who recently performed my husband's successful REZUM procedure.
I got the results back re: my CCS a couple of days ago. My coronary artery calcium score is seriously high although still a bit under the 400 threshold. I also have some calcification in a valve. So, because I am a retired M.A. allied health care professional and actually enjoy reading/absorbing this type of info. quickly for "the bigger picture", I started checking reputable medical information websites. The Cleveland Clinic and others mentioned LEFT breast cancer radiation treatment as yet another risk factor for coronary artery disease, specifically the RIDH sub-variety). I have never my LEFT breast cancer radiation mentioned to me by any of my Drs. as a Heart Disease risk factor since my LEFT breast radiation ended in Feb 2014.
Sadly Colleen, I received absolutely NO monitoring at all from my primary care physicians, oncologist (I was dismissed by him after 5 years of taking Letrozole), nor any other M.D./Clinic in my HMO system in the Twin Cities East Metro (extending into Western WI). I only had a follow-up appt. w/ a staff primary care Dr. (covering my new primary care "Dr. M's" LOA) at my HMO clinic AFTER my CCS results arrived at the clinic Feb 23, 2020. She was, at first, very unfriendly about my "getting the CCS test in the first place" (even though my high risk traits AND LEFT breast radiation have all been in my chart since 2014 or before). She, additionally was unfriendly about even the existence or applicabiity of RIHD for my high CCS (w/ my only mild/moderate metabolic #s, mild overweight status, no smoking (since age 21) and no drinking, and moderate exerciser status).
After it became clear I was well-informed w/ current data, and I mentioned our close family member M.D. (in Seattle), AND, my thorough research of info. on the Cleveland Clinic's Speciality Clinic (I believe the only one in the U.S.) for RIHD, only then did she drop her unfriendliness for the CCS and for RIHD discussion. She then showed me a general heart diagram to compare with my results and said 'Yes, it does look like the valve and probably the coronary arteries too are seriously calcified due to Radiation Damage, i.e., RIHD." She gave me a prescription for Lipitor and told me to take Vitamin K2 (sparingly) and CoQ10 also until I meet again in May '20 w/ my new "Dr. M." primary Dr. currently on LOA.
Colleen, would you be willing to share what I have written here with your Cardiology and Oncology Departments Rochester and/or other Mayo Clinic sites? I believe there is a serious need for more RIHD Speciality Clinics (I would ideally hope for one at Mayo, Rochester). Simple web searches reveal that there are well-documented thousand of us women prior to 2016 or so who received 1)High Dose,2) targeted Very Close to the Heart radiation for Left side breast cancer (or for some Lymphoma patients receiving general heart area/chest radiation) NOW having very serious or approaching seriousness Heart Disease status some years later.
I give my permission to you to print my entire post (or one edited by you) to share with Cardiology and Oncology/Radiology Drs. and staff as you may deem appropriate. (If you want my full name, address, phone, and other info.,in regard to my request to share, I will glad furnish it to you in a private email to you). I and other like me appreciate any additional help you can give us and the potential thousands of other patients like us.
I'm sorry this is so long, Colleen, but you know from my beginning saga and others' long term sagas that this is a complicated situation/diagnostic journey. Thank you and Mayo also for being here for us and having a gathering place such as Mayo Connect. Sincerely, Marti .

REPLY
@inali

Hi martijwis,
I too have recently been diagnosed with CAD. Seems to be part of the RIHD collection of negative effects. I had three stents put in the right coronary artery (RCA) less than two years ago, and in October I learned the artery is now 100% occluded. The term used by the doc when reviewing my tests was a very matter of fact “the artery disappeared”. That totally freaked me out! It can’t be a good thing to have an artery with good blood flow (thanks to the stents) just disappear, right? He grabbed me off the ceiling and explained that there were other ‘channels’ that formed and were feeding blood to that part of the heart. I’m hoping that’s not a temporary thing. At any rate, from one of the research articles at Cleveland Clinic (thanks for the tip), I learned that those with RIHD are more prone to restenosis than most. I’m learning more about this issue every day. There definitely needs to be more research into early intervention strategies that slow or stop the progression prior to a person becoming symptomatic. Discovering this condition exists 40 years after radiation is at least 35 years later than necessary.

Keep in touch and let me know how your treatment progresses.

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Hi again Inali, Re: these events that have happened to you--shocking news. Interesting to hear about the new channels that formed. I remember reading something about that during my intense recent research. There is SO much more yet to learn. Yes, I agree with you 100% about the need for more early intervention strategies (like the regular monitoring of our hearts after our high risk left side radiation treatment from years, as Colleen mentioned) to slow or stop the progression. If I would not have recently heard about the Coronary Artery Scan (CCS) and paid $100 out of pocket to have it done, I would still be in the dark about the real status of my coronary arteries and one of my valves. My left breast cancer radiation ended in early 2014. Again, I am so very sad that your diagnosis took this unbelievably long time. I believe the CCS came into being sometimes in the 1980s. And, I'm not sure that the left side radiation induced heart disease connection pattern became apparent until maybe just a few years ago (?) by our increasing numbers? If you have the time or interest to read the Detailed reply I wrote to Colleen in answer to her comments/questions for me, about my just beginning saga,, please do so and feel free to comment. At the bottom of my reply is my request also to Colleen to please share our stories/sagas w/ Drs. and consider opening more RIHD Speciality Clinics (including at Mayo) for the increasing #s of us being found with this disease. I'll keep in touch about how my treatment is going at this earlier stage and so my info. might not be that useful for you so mostly would like you to keep me posted about your progress, esp. with this October '19 news. And I will let you know if I read anything especially helpful, perhaps, for those of us w/ RIHD--CAD and other effects. You are very strong to write so honestly and clearly about all you have experienced with heart disease and finally getting the correct diagnosis. And yes, I share your feelings about this RIHD condition, seemingly, still not being screened by many Drs. or recognized/publicized by the media and/or our doctors, or even mentioned to those of us who had Left side radiation.

REPLY
@martijwis

Hi again Inali, Re: these events that have happened to you--shocking news. Interesting to hear about the new channels that formed. I remember reading something about that during my intense recent research. There is SO much more yet to learn. Yes, I agree with you 100% about the need for more early intervention strategies (like the regular monitoring of our hearts after our high risk left side radiation treatment from years, as Colleen mentioned) to slow or stop the progression. If I would not have recently heard about the Coronary Artery Scan (CCS) and paid $100 out of pocket to have it done, I would still be in the dark about the real status of my coronary arteries and one of my valves. My left breast cancer radiation ended in early 2014. Again, I am so very sad that your diagnosis took this unbelievably long time. I believe the CCS came into being sometimes in the 1980s. And, I'm not sure that the left side radiation induced heart disease connection pattern became apparent until maybe just a few years ago (?) by our increasing numbers? If you have the time or interest to read the Detailed reply I wrote to Colleen in answer to her comments/questions for me, about my just beginning saga,, please do so and feel free to comment. At the bottom of my reply is my request also to Colleen to please share our stories/sagas w/ Drs. and consider opening more RIHD Speciality Clinics (including at Mayo) for the increasing #s of us being found with this disease. I'll keep in touch about how my treatment is going at this earlier stage and so my info. might not be that useful for you so mostly would like you to keep me posted about your progress, esp. with this October '19 news. And I will let you know if I read anything especially helpful, perhaps, for those of us w/ RIHD--CAD and other effects. You are very strong to write so honestly and clearly about all you have experienced with heart disease and finally getting the correct diagnosis. And yes, I share your feelings about this RIHD condition, seemingly, still not being screened by many Drs. or recognized/publicized by the media and/or our doctors, or even mentioned to those of us who had Left side radiation.

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Marti,
I completely relate to what you’ve described. I’m grateful for your insights. In fact, due to your mention of the documentary “widow maker’, I sought it out on Amazon and finished viewing it a few minutes ago. Had I this info back in 2017, I would not have consented to the stents — which ultimately proved worthless in keeping the artery open. Their presence may complicate matters for any future surgical intervention.

Most frustrating for me is that, like you, once I hit the 5 year mark and was among the ranks of the statistically cured, I was cut loose by my oncologist and no doc along my life’s journey since that time has alluded to my heart disease risk. In fact I’ve had perfect blood pressure, great cholesterol numbers, don’t drink or smoke, and have always tried to eat healthy with a focus on nutritionally dense foods. Even when I began to experience shortness of breath 4 years ago, the standard heart screening tests (ekg and stress test) were normal, so the first two cardiologists I saw moved me on to other specialists for other tests. When the internist I saw suggested that my symptoms were stress related and recommended I try yoga, I knew I needed to move beyond my town’s medical community. Mind you, through all this testing my breathing grew worse and I was struggling just to function at work. It wasn’t until the cardiac cath procedure (and stenting) that I began to realize just how serious my heart condition was. And a year after that when I continued to get worse, I was able to get a referral to Mayo. One echocardiogram later, I became aware of the existence of RIHD.

A CCS even as recently as 4 years ago could have made a difference. I’ve always disclosed my cancer and radiation therapy when giving my medical history. Not a single physician - until now - has mentioned the potential for heart damage and/or sought to check it out. How is this possible? In my recent digging for research studies and articles, I’ve found a few from as long ago as the 80s.

Kudos to you for learning all this less than 20 years after your cancer. I agree with you that patients need to know. And the medical community needs to be better educated about the need to monitor their patients who fall into this category. At this point, it may be too late for me to expect much from my heart - even with the valve replacement, there’s still the CAD. Time will tell. Meanwhile I busy myself with prepping the house for my surgery recovery period, disposing of extraneous possessions, estate planning, and spending time with my adult children and my grandkids.

BTW, the film was a real eye opener. I note that the doc so vehemently opposed to CCS is still at Cleveland clinic and still steering folks away from it as a diagnostic tool. Shocking!

REPLY
@inali

Marti,
I completely relate to what you’ve described. I’m grateful for your insights. In fact, due to your mention of the documentary “widow maker’, I sought it out on Amazon and finished viewing it a few minutes ago. Had I this info back in 2017, I would not have consented to the stents — which ultimately proved worthless in keeping the artery open. Their presence may complicate matters for any future surgical intervention.

Most frustrating for me is that, like you, once I hit the 5 year mark and was among the ranks of the statistically cured, I was cut loose by my oncologist and no doc along my life’s journey since that time has alluded to my heart disease risk. In fact I’ve had perfect blood pressure, great cholesterol numbers, don’t drink or smoke, and have always tried to eat healthy with a focus on nutritionally dense foods. Even when I began to experience shortness of breath 4 years ago, the standard heart screening tests (ekg and stress test) were normal, so the first two cardiologists I saw moved me on to other specialists for other tests. When the internist I saw suggested that my symptoms were stress related and recommended I try yoga, I knew I needed to move beyond my town’s medical community. Mind you, through all this testing my breathing grew worse and I was struggling just to function at work. It wasn’t until the cardiac cath procedure (and stenting) that I began to realize just how serious my heart condition was. And a year after that when I continued to get worse, I was able to get a referral to Mayo. One echocardiogram later, I became aware of the existence of RIHD.

A CCS even as recently as 4 years ago could have made a difference. I’ve always disclosed my cancer and radiation therapy when giving my medical history. Not a single physician - until now - has mentioned the potential for heart damage and/or sought to check it out. How is this possible? In my recent digging for research studies and articles, I’ve found a few from as long ago as the 80s.

Kudos to you for learning all this less than 20 years after your cancer. I agree with you that patients need to know. And the medical community needs to be better educated about the need to monitor their patients who fall into this category. At this point, it may be too late for me to expect much from my heart - even with the valve replacement, there’s still the CAD. Time will tell. Meanwhile I busy myself with prepping the house for my surgery recovery period, disposing of extraneous possessions, estate planning, and spending time with my adult children and my grandkids.

BTW, the film was a real eye opener. I note that the doc so vehemently opposed to CCS is still at Cleveland clinic and still steering folks away from it as a diagnostic tool. Shocking!

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Inali, It is a very frustrating situation, that we were not monitored regularly w/ our left breast cancer radiation and other high risks. I believe heart ultra sounds every year and/or the CCS every 3 years or so if the patient really wants it would probably have been very advisable. Something to alert us to this very rapidly progressing heart disease due to the condition of the RIHD. I'd better get to bed here soon but wanted to write about something that might be helpful for the artery that "disappeared" as the Dr. said due to the stents you had. Our neighbor recently had a heart attack and had bypass surgery. They took arteries from his legs to graft onto his heart. These keywords (can't send links yet) , if it comes through is another Cleveland Clinic article (just beware of that one Dr. who was so against the CCS, I guess) regarding heart bypass. input these key words into your search engine: Cleveland Clinic Heart Bypass Various Blood Vessels" and the article should appear for you. Sounds like chest wall arteries and mammary arteries might work even better than the leg arteries in bypass surgery. Maybe you've already discussed bypass surgery with your Dr. and that's what you meant when you said the stents and artery "disappearance" may prevent you from getting good surgery results now. But, in case this might be helpful info. for you, it might be worth a look for you . I've been reading more articles pertaining to my situation and thought this article might be helpful somehow for yours.

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