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inali (@inali)

Cancer Treatment Induced Heart Disease

Cancer: Managing Symptoms | Last Active: May 17 6:48pm | Replies (48)

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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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Replies to "@martijwis, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to..."

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 .

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