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inali (@inali)

Cancer Treatment Induced Heart Disease

Cancer: Managing Symptoms | Last Active: Jul 11, 2020 | Replies (41)

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@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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Replies to "Hi again Inali, Re: these events that have happened to you--shocking news. Interesting to hear about..."

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!