Cardiotoxicity

Thanks Polly. I have a referral to another cardiologist, just haven't made an appointment yet. Tried to today, but they want to see the referral first, to triage it, so I'm going to drop it off to them tomorrow.

How were the results from excision of the lump? Hopefully ok ??.

Take care, Lyn

Hi Lyn

I was a bit like you and finding that my heart rate would escalate quickly with any exercise ( even walking on the treadmill at rehab) but thought it was just a fitness issue. I was also having problems with dizziness and could pass out even when I was lying flat so my GP has been keeping a close eye on things and decided to send me to the cardiologist. She also got me to have another echo and that was when it was picked up. I have been having regular echo but until now they had been fine. 

If you are concerned, maybe you could ask your GP about getting another echo done. They are not invasive but can give them a clearer idea of what's going on. From what I understand they are done routinely post chemo as the damage can appear months or years after finishing treatment.

Goodluck Lyn. I hope you start to feel better.

cheers Polly

Hi Polly. Did you have any symptoms? Was that why you were seeing a cardiologist? Or was it a routine echo that diagnosed your cardiomyopathy? 

I'm wondering, as I've persistently had a very low tolerance to activity since shortly after starting chemo, in that my heart rate goes up quite high, quite quickly, but my echo was normal. I finished neoadjuvant chemo in early October. 

Take care, Lyn

I can totally understand your frustration Polly and would be the same if I'd finished treatment and thought something like this was behind me. It is the gift that just keeps giving huh?

I hope all is OK with the lump you had removed and hopefully the cardiomyopathy can be managed with some medication and extra monitoring. 

Let us know how you get on. Will be keeping my fingers crossed for you. Jane xx

Thanks for your reply Jane.

I've not come across anyone else who has been impacted by this so it was good to hear your story. I'm nearly a year post chemo and this has only shown up in my last echo so I've been told it is most likely irreversible. I haven't had a chance to discuss it with my oncologist yet but that's probably a good idea as he should have plenty of experience with it.

It's just a little frustrating as I'm trying to put all of this in the past but the side effects keep popping up. Yesterday I had another lump removed from my mastectomy site and it was hard to know what I was more worried about, the lump or the cardiomyopathy. Of course I've been told to rest but with school going back this week still have lots to do to get the kids ready and just want to get on with life. I understand now why people call it a new normal post cancer. Thanks again for your reply.

Polly

Thanks Ann Marie

I have seen a cardiologist who diagnosed the cardiomyopathy and from what I understand because I finished neoadjuvant chemo 11 months ago it is most likely permanent. I have been given an appointment to see another cardiologist who specialises in this kind of thing but would like to be a little better prepared when I see him. I think I will definately discuss this further with my GP. Thanks again.

Polly

Hi Polly, sorry to hear your news. I was diagnosed with cardiomyopathy during my chemo / Herceptin treatment & it was thought to be caused by the Herceptin which does occasionally have this effect. In my case, my oncologist referred me to a cardiologist who prescribed heart tablets and I was more closely monitored by both the oncoogist and cardiologist. My treatment dose was changed as well and slightly delayed while I got sorted out. 

Although it was a scary and worrying time it was also thankfully temporary and by about 6 months after all treatment I was able to stop the heart medication and no longer see my cardiologist as my heart function is back in the normal range. I finished active treatment in July 2013 and am back to some kind of normal :-) 

I would agree with Ann-Marie about talking to your oncologist as soon as possible about what this diagnosis means for you and how it will be managed throughout your treatment.

All the best. Jane xx

Hi Polly,

My name is Ann-Marie and I am the Online Community Coordinator at BCNA.  I have just had a chat with our policy team to get some more information about this for you.

It is possible that some breast cancer chemotherapy drugs (such as anthracyclines) can cause cardiac side effects, some of which can improve over time once treatment is finished. Words like 'cardiotoxicity' can be very scary and need more explanation about what it may mean for you.

Have a chat to your breast specialist and see if she/he is planning to send you to a cardiologist who will be able to explain in more detail what the short and possible long term implications might be. You can also chat with your GP who should be able to provide you with more information and help ease your concerns.

Stay in touch and let us know how you go.

~Ann-Marie x