Radiotherapy and mvd syndrome x

[Copsem]

I have had radiotherapy for Brest cancer and have developed heart circulation and breathing problems two months after the radiotherapy. I believe the two are linked .Stress echo shows shows some ischemia and angiogram clear. Has this happened to anyone else ? Feeling a bit alone .

[Milkfairy Heart Star]

Hi Copsem,

I am sorry that you are having to manage breast cancer and a heart condition at the same time.

Have you been seen by a Cardiologist who has diagnosed you with Microvascular angina?

Cardiac syndrome X is a now a historical term. Any Healthcare professional using this term tends not to be upto date with the latest research into the condition which includes a change in the terminology used.

Did you have chemotherapy too? Some chemotherapy can also increase angina and heart problems too.

I have lived with vasospastic angina causing Microvascular angina and Coronary artery spasms for over 6 years.

I have to be very careful about any of my stressors which are the cold, emotional and mental stress or any other medications. Beta blockers make my coronary artery spasms worse.

I received the news to say I had an abnormal mammogram result 2 weeks after my mother died of breast cancer.

Luckily mine was in the very early stages and easily treated.

The stress was really difficult to manage and I nearly ended up in hospital because I had so much extra chest pain.

Microvascular and vasospastic angina are poorly understood conditions and not always recognised by Cardiologists.

It is important to establish a good relationship with your Cardiologist so that you can work together to find the best treatment.

[Copsem in reply to Milkfairy]

Thank you for your help. I think I am falling between the two departments of cardiology and radiotherapy. I am unsure which medicines to take as I am not confident the diagnosis is correct . I am resting and trying to avoid stress and eat well . I have the nitrate spray but don’t get on with it . My circulation seems poor and although I am not in great pain I am very weak . I also reacted badly to the angiogram and was left with a painful badly swollen arm that has taken 3 weeks to get better.I am not sure if I should go down the “drugs “ route ( or just try a healthy lifestyle approach. My discharge notes say reversible ischemia ... how long does reversible take ? Any ideas? tank you

[Milkfairy Heart Star in reply to Copsem]

Microvascular angina is poorly understood and recognised and is outside the usual sphere of practice of most Cardiologists.

I worked with my Cardiologist over many years to find the best combination of drugs that work best for me.

I also experience migraine and Raynauds phenomenon all due to spasms in my blood vessels.

There is some information about MVA on the BHF website and the links are below:

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Women tend to have symptoms such as extreme tiredness, breathlessness, poor sleep and sense of all is not well with you rather than chest pain.

I suggest you go back to your Cardiologist show them the information from the BHF.

Microvascular angina is thought to be due to the small blood vessels failing to dilate or constricting this can be seen as reversible ischaemia in some tests.

These episodes are transitory coming and going but are felt as chest pain or breathlessness etc. This can be in response to exercise, cold, mental and emotional stress. They can happen at rest.

I hope you are able to get the help you need sooner rather than later.

It is important to get the correct diagnosis so you can be treated appropriately. You only want to take medication that is truly necessary.

[Copsem in reply to Milkfairy]

Thank you so much for your help. I have done more research and found quite a few people have radiation induced heart disease ( RIHD) . It seems more widely acknowledged in the USA than UK . I will have to look for a consultant here who can help me . My radiotherapy team here in the UK are in denial that it happens but cardio toxicity after radiotherapy seems to be acknowledged in the states .

[Milkfairy Heart Star in reply to Copsem]

Thank you for raising this important issue.

Some of us may also have to have chemotherapy and/ or Radiotherapy so need to be aware of these potential harmful effects .

I hope you are able to find the support you need soon.

[Hidden in reply to Copsem]

I hate to tell you but their attitude is more like "hey, I got you well, and cured your cancer", "You ought to be grateful for that".

I would say, it's likely it's a lack of post-radiotherapy care. I often wonder if they actually used the minimum amount of radiation necessary to stop this type of "side effect" to occur whilst it is still effective to contain cancer. How do/would they determine as to how much radiation would be necessary to EACH PATIENT in each case?

You clearly got this damage done. Of course, radiation exposure can be very serious. No doubt it has serious side effects depending on how much exposure you received. I'm pretty sure there's enough info available. If the consultant says, "he does not know". He's probably saying, "not my fault" and, "my lawyer says he's not liable".

[Copsem in reply to Hidden]

Thank you. I have been back to hospital and it has been confirmed that I have some radiation damage on my heart . It’s rare but does happen . On meds now and feeling a bit better

[Hidden]

Copsem

Did you have chemotherapy as well as Radiotherapy?

Milkfairy

You say, 6 years ago. Did you have any major "MV trigger" 6 years ago that you could think of?

[Milkfairy Heart Star in reply to Hidden]

Hi Autumnsonnet

Looking back I had stomach and upper back pain which I now know is due to angina from my late 20's.

I had an episode of severe chest pain when my middle child was born in my 30's they thought perhaps a pulmonary embolism

I was prescribed beta blockers and my MRI showed a small patch of myocarditis in my early 50's which lead to an Admission that lead to my diagnosis of vasospastic angina with also a query of a Heart attack.

[Hidden in reply to Milkfairy]

Milkfairy

Wow.

Thank you for sharing.

[Copsem in reply to Hidden]

No chemo for me just radiotherapy to the chest wall . Macmillan have been helpful and say it does rarely cause lungs and heart damage but my consultant says this is very rare now tecniques are better . However I have crashed since radiotherapy and been hospitalised twice with heart / breathing Probs so it’s real for me . Be grateful for any advice x

[Copsem in reply to Hidden]

They have confirmed I have some likely radiation damage to my heart on meds now and feeling a bit better

[Copsem]

Hello everyone. I have found a good article about radiotherapy and MVA. They acknowledge that it is a growing field and I am hoping to get a referral to the Brompton soon . Will keep you updated

bjcardio.co.uk/2018/01/card...

[Milkfairy Heart Star in reply to Copsem]

Hi Copsem,

Thanks for that .

I saw the article too and I am already aware of Dr Alex Lyons at the Royal Brompton.

He also has an interest in Takostubo syndrome which is thought to be linked to Microvascular dysfunction and Microvascular angina.

I hope you get your referral sorted soon.

[Moonflower76]

Hi Copsem

I have also heard of this connection between radiation and the heart. So sorry this happened to you. Hopefully you will get on some good medication to help control it. It is horrible having heart pain as you experience the whole world through your heart so when you have crushing pain there it can really get you down (there has even been scientific research to say there are cells and neurons similar to brain cells in the heart) and that everything takes heart physically , after going through breast cancer it is tough.

[Copsem in reply to Moonflower76]

Thank you for your support x

[Copsem]

Update ! I have an appointment at The Brompton Cardioncology clinic yay 😀. I am having a cardiac mri and other tests before I see the consultant who specialises in radiation damage. On NHS so very pleased. Six weeks from referral to appointment so can’t complain 😃

[Milkfairy Heart Star in reply to Copsem]

Hi Copsem,

Fantastic news.

I hope the appointment goes well.

I met someone recently who has seen Dr Alex Lyons she developed heart failure due to chemotherapy.

She is very happy with her care .

Good luck!

[Copsem in reply to Milkfairy]

Been to the Brompton cardiologist who have been great . Cardiac mri confirms heart is ok but have some lung toxicity damage from the radiotherapy which presents itself like heart problems ( chest pain , breathing difficulties) and interruption of breathing patterns , causing palpitations. Feeling happier now I know what’s really going on !

[Milkfairy Heart Star in reply to Copsem]

Hi Copsem

Good news indeed!

What a relief for you to now know what is going on.

I am also delighted than MVA is not part of the picture for you.

[Copsem in reply to Milkfairy]

Thank you for your help . Keep up the good work 😃