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.

Liked by penn1023

@colleenyoung

Hi @inali @martijwis and @sakota, I'm just catching up with this discussion now.

Marti, you're right that heart disease related to cancer treatments should be discussed with cancer patients. Mayo cardiologists published this paper on the topic back in 2014
– Evaluation and Management of Patients With Heart Disease and Cancer: Cardio-Oncology https://www.mayoclinicproceedings.org/article/S0025-6196(14)00475-3/pdf

Thank you for your permission to share your comments with Mayo experts.

Joan, I agree with Inali. Please raise the topic of cancer treatment and its affects on your heart, especially if you already had heart disease before cancer. Before my father had cancer treatments, they conducted specific heart tests to better understand the condition of his heart, the possible impact of treatment and how to effectively avoid potential issues. His heart was monitored during treatment too. Did you have tests done before treatment that you're aware of?

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Thank you for the link, Colleen, to the Mayo article re: heart disease and cancer from 2014. Also, I appreciate your willingness to possibly share my comments w/ Mayo experts especially in regard to Coronary Calcium Scan for early detection of heart disease of us cancer patients who are at high risk due to radiation treatment. I am becoming more aware now of Mayo's expertise in acknowledging and treating RIHD. We'll see how things go with the treatment I'm getting now in my area. If I need better options/procedures in the future, I'll seriously consider coming to Mayo.

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@colleenyoung

Hi @inali @martijwis and @sakota, I'm just catching up with this discussion now.

Marti, you're right that heart disease related to cancer treatments should be discussed with cancer patients. Mayo cardiologists published this paper on the topic back in 2014
– Evaluation and Management of Patients With Heart Disease and Cancer: Cardio-Oncology https://www.mayoclinicproceedings.org/article/S0025-6196(14)00475-3/pdf

Thank you for your permission to share your comments with Mayo experts.

Joan, I agree with Inali. Please raise the topic of cancer treatment and its affects on your heart, especially if you already had heart disease before cancer. Before my father had cancer treatments, they conducted specific heart tests to better understand the condition of his heart, the possible impact of treatment and how to effectively avoid potential issues. His heart was monitored during treatment too. Did you have tests done before treatment that you're aware of?

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Thank you colleen and inali for answering my question……. I had a thorough heart check up when I went to mayo the first time and they found the lung cancer. I've been trying to stay upbeat about all this but it is slowly dragging me down….. Have my ct scan in april and am concerned about that……. my copd is getting worse and now I am learning about the heart problems with radiation. whats going to be next. I know a lot of you are worse off than I……… how do you do it, how do you keep a positive attitude. I try to keep busy. but its getting hard.

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@martijwis

Thank you so very much, Inali, for answering my questions so clearly. I am still learning and was feeling overwhelmed the past couple of days. I didn't even know that "bypass" and CABG (graft) were about the same thing. I am so so sad to hear of the diagnosis of congestive heart failure. I now understand even more why you feel exactly as you do.

I am on atorvastatin (Lipitor) now as well as vitamin K2 and CoQ10. Supposedly, K2 helps the body process calcium so that it goes more into the teeth and bones instead of kidney stones (which I had) and calcium in coronary arteries–as found in the CCS test. Many people are deficient in K2 and I think I am too.

I do know that my downing of the calcium units my Dr. prescribed for my osteopenia was a bad thing also. Articles came out a little after my kidney stone problems began in 2012 that stated that many menopausal women are now getting kidney stones most likely from the calcium carbonate pills they're taking. I take algae calcium now 1-2 times a week only and try to get the rest of calcium from spinach and organic milk along w/ vitamin D3 and magnesium pills on occasion.

I've felt a heaviness in my heart area off and on for a year. Had some shortness of breath 3 years ago but that went away with more regular exercise and some weight loss. Have minor chest ache when turning a certain way suddenly, like to grab something on my left off an end table, for example.

Will just keep monitoring how I'm doing on these pills I'm taking for now until seeing regular Dr. in May.

Your information and suggestions are invaluable to me and I again am so sad about the resistance to recognizing RIHD by so many in the medical field until just very recently. i will be extremely reluctant to get the stents, even the newer medication-laced ones. It sounds like some hospitals might do CABG for those of us with RIHD now when our arteries are very clogged and heart attack seems very likely.
That seems the best route to me at this time after all you wrote.

I would probably choose going to Mayo, like you. I read the articles from the Cleveland Clinic, as you know. But, know, as you said that one of the Drs. resistant to CCS is still on staff there as you said AND it's a long way from our house. We do live about 100 miles from Mayo and it seems like they are fully "on board" w/ CCS, RIHD, and the most up to date procedures, if any, that can help us.

Again, thank you so much for your wisdom and willingness to share it. Please keep in touch and let me know how you are doing. I admire your strength and honesty. Marti

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Hi Marti,
You are so fortunate to be so close to Mayo! Our drive is about 7 hours, so even to go for a one day consultation is a major effort. However, Cleveland Clinic is even further away, so tempting as it is to check in there for a consultation because of their Radiation Heart Disease Clinic, that'll need to be a pass for us. There comes a time when you just need to put your faith in the skill of your doc/surgeon to handle whatever is encountered. My surgery at Mayo is a little over a month away, so I'm leaning into that and tamping down my tendency to keep wanting to investigate other options. I've got to get busy putting plans in place for family/friends to visit while I'm hospitalized and/or recovering there in Rochester. Temporary (affordable) housing is not easy to come by in that area – I guess because it is in such demand.

You always share such interesting/intriguing things 🙂 I'd never heard of Vitamin K2 until you mentioned it. I checked it out, but seems to be something I have to skip due to the blood thinners I'm on and likely to remain on indefinitely following valve replacement surgery.

It seems I've managed to acquire pretty much all the heart structural problems possible from radiation. Still, I have to keep in mind that I could be much worse off. The biggest challenge is to keep positive and focused on the good things in life. I could easily dissolve into feeling sorry for myself and retreating into a hermit-like existence. I fight everyday to keep as active as I can, and to communicate with family and friends about topics that are life affirming and uplifting. At the same time, I'm sounding the alarm to those I know who've had radiation to the chest for breast or other cancers. At the very least, they should consider having the CCS!

You are clearly focused on doing all you can to keep yourself healthy and expand your knowledge of your condition. I am certain that your commitment will enable you (with the assistance of your health care providers) to slow the progression of this horrid disease while more effective treatments are found.

REPLY
@sakota

Thank you colleen and inali for answering my question……. I had a thorough heart check up when I went to mayo the first time and they found the lung cancer. I've been trying to stay upbeat about all this but it is slowly dragging me down….. Have my ct scan in april and am concerned about that……. my copd is getting worse and now I am learning about the heart problems with radiation. whats going to be next. I know a lot of you are worse off than I……… how do you do it, how do you keep a positive attitude. I try to keep busy. but its getting hard.

Jump to this post

Keeping positive is a daily challenge. I tell myself I'm ready to go and I'm not afraid of dying, but then I get angry about all the things I still want to do before I die. As my abilities and mobility decline, I'm able to do less. I find that to be the most frustrating of all. The important thing is to truly enjoy and immerse yourself in activities you love. I love to read, and for the last 30 years have been so totally immersed in my career that I hardly ever read for pleasure. Now I can indulge that passion as much as I like. I read hard copy, ebooks, and listen to audio books — depending on my mood. One of my favorite things to do is listen to my audio book on my smart phone while doing laundry. It's a little thing, but I get that sense of accomplishment and being useful while listening to a fascinating story. Video chatting with my grandsons is a source of great joy for me. I'm able to spend time painting and drawing – other old hobbies I set aside while chasing the almighty dollar. Learning of my health condition, if nothing else, led me to finally retire. Without that, who knows how long I would have continued to work. Just look for the little things that "spark your joy" – that is the best way I know to stay positive.

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@inali

Hi Marti,
You are so fortunate to be so close to Mayo! Our drive is about 7 hours, so even to go for a one day consultation is a major effort. However, Cleveland Clinic is even further away, so tempting as it is to check in there for a consultation because of their Radiation Heart Disease Clinic, that'll need to be a pass for us. There comes a time when you just need to put your faith in the skill of your doc/surgeon to handle whatever is encountered. My surgery at Mayo is a little over a month away, so I'm leaning into that and tamping down my tendency to keep wanting to investigate other options. I've got to get busy putting plans in place for family/friends to visit while I'm hospitalized and/or recovering there in Rochester. Temporary (affordable) housing is not easy to come by in that area – I guess because it is in such demand.

You always share such interesting/intriguing things 🙂 I'd never heard of Vitamin K2 until you mentioned it. I checked it out, but seems to be something I have to skip due to the blood thinners I'm on and likely to remain on indefinitely following valve replacement surgery.

It seems I've managed to acquire pretty much all the heart structural problems possible from radiation. Still, I have to keep in mind that I could be much worse off. The biggest challenge is to keep positive and focused on the good things in life. I could easily dissolve into feeling sorry for myself and retreating into a hermit-like existence. I fight everyday to keep as active as I can, and to communicate with family and friends about topics that are life affirming and uplifting. At the same time, I'm sounding the alarm to those I know who've had radiation to the chest for breast or other cancers. At the very least, they should consider having the CCS!

You are clearly focused on doing all you can to keep yourself healthy and expand your knowledge of your condition. I am certain that your commitment will enable you (with the assistance of your health care providers) to slow the progression of this horrid disease while more effective treatments are found.

Jump to this post

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

REPLY
@martijwis

Thank you for the link, Colleen, to the Mayo article re: heart disease and cancer from 2014. Also, I appreciate your willingness to possibly share my comments w/ Mayo experts especially in regard to Coronary Calcium Scan for early detection of heart disease of us cancer patients who are at high risk due to radiation treatment. I am becoming more aware now of Mayo's expertise in acknowledging and treating RIHD. We'll see how things go with the treatment I'm getting now in my area. If I need better options/procedures in the future, I'll seriously consider coming to Mayo.

Jump to this post

@martijwis should you wish to inquire about a second opinion at Mayo Clinic, here's the contact information to call or submit a request online. You can self-refer or have your doctor refer you. http://mayocl.in/1mtmR63

You may find this Visitors Guide helpful too. It answers many commonly asked questions https://www.mayoclinic.org/patient-visitor-guide

@Sakota9 it isn't easy to keep a positive attitude. How does one reframe hope? Members talk quite a bit about dealing with cancer and depression in the Cancer: Managing Symptoms group https://connect.mayoclinic.org/group/cancer-managing-symptoms/

You might want to start a new discussion in that group asking "How do you keep a positive attitude?" I'm sure there are many who could relate and hopefully offer tips or strategies that worked for them.

Liked by martijwis

REPLY

The cancer education team just posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

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@inali

Hi Marti,
You are so fortunate to be so close to Mayo! Our drive is about 7 hours, so even to go for a one day consultation is a major effort. However, Cleveland Clinic is even further away, so tempting as it is to check in there for a consultation because of their Radiation Heart Disease Clinic, that'll need to be a pass for us. There comes a time when you just need to put your faith in the skill of your doc/surgeon to handle whatever is encountered. My surgery at Mayo is a little over a month away, so I'm leaning into that and tamping down my tendency to keep wanting to investigate other options. I've got to get busy putting plans in place for family/friends to visit while I'm hospitalized and/or recovering there in Rochester. Temporary (affordable) housing is not easy to come by in that area – I guess because it is in such demand.

You always share such interesting/intriguing things 🙂 I'd never heard of Vitamin K2 until you mentioned it. I checked it out, but seems to be something I have to skip due to the blood thinners I'm on and likely to remain on indefinitely following valve replacement surgery.

It seems I've managed to acquire pretty much all the heart structural problems possible from radiation. Still, I have to keep in mind that I could be much worse off. The biggest challenge is to keep positive and focused on the good things in life. I could easily dissolve into feeling sorry for myself and retreating into a hermit-like existence. I fight everyday to keep as active as I can, and to communicate with family and friends about topics that are life affirming and uplifting. At the same time, I'm sounding the alarm to those I know who've had radiation to the chest for breast or other cancers. At the very least, they should consider having the CCS!

You are clearly focused on doing all you can to keep yourself healthy and expand your knowledge of your condition. I am certain that your commitment will enable you (with the assistance of your health care providers) to slow the progression of this horrid disease while more effective treatments are found.

Jump to this post

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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@colleenyoung

The cancer education team just posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

Jump to this post

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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@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!

Jump to this post

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!

Jump to this post

@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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