Radiotherapy heart complications: what is your experience?

Firstly I would like to say I am sorry for the loss of your Mum. It must have been a terrible shock to you when she died.

I feel I must defend radiotherapy treatment regarding heart damage. Modern radiotherapy equipment and techniques have vastly improved the complication rates from side effects and everything possible is done to avoid critical structures such as the heart and lungs.

Each treatment plan is created for the individual patient and there is no ‘one size fits all ‘solution. In my experience if there ever has been any damage to heart or lungs  this appears years later and is placed under the umbrella of late effects.

Lots of data on the internet is old data before modern techniques such as breath hold and daily  imaging were introduced. It usually take five years or more before new studies are published.

I know from my own experience that cardiovascular disease can present suddenly as I have just been through it with my partner and it is a highly stressful occurrence.

You are absolutely right that any patients undergoing radiotherapy should be fully aware of the risks and benefits of the treatment and this forms the basis of ‘ informed consent’ which is required by law and I hope that for most people the benefits outweigh the risks.

So my advice to anyone facing radiotherapy is to make sure all the risks and benefits are explained to you in detail but also know that thousands of women have the treatment every year with no ill effects .

Thank you for that, it has made me feel better and a little more reassured.   My thoughts go out to FEM at the sudden loss of your mother, such an awful thing to happen when she had come through breast cancer.  With any treatment there are risks even from the general anaesthetic and when someone dies unexpectedly we want answers. All the risks from radiotherapy were clearly explained to me before treatment, so I knew it could damage other parts of my body.  This journey is not an easy one for any of us.

Thank you for responding. I was affected when I read this last night. I am in the middle of radiotherapy and couldn't respond. I was a Nurse all my working life in some capacity. I worked in Cardiovascular Intensive Care for a while. I lost my Mother to bowel cancer 4 yrs ago. I do feel the pain of loss even now although it's much easier and I can live with it. I agree, they do point out the risks and help each person work on minimising them by the breath hold technique. 

Anyone on this journey knows the treatment is given to preserve life or add a few years. The shock of what happened is immense, trying to make sense of it is impossible at first. It is hard on both sides, for you and for the staff behind this. When my Mother died I was so angry, I did write to various people to get them to improve standards in end of life care. Different situation entirely. 

Thank you for reminding me of the risks, I do realise that. I practised breath holding beforehand to make sure I could do it. 

Hi Sabrina22, Evajean, exraygirl, 

Firstly I want to say that I'm thinking of you all and anyone else that is currently going through treatment. I hope the journey is going as smoothly as possible for you and the last thing I want to do is add additional stress at this time. Thank you for your thoughts for my mum. 

I'm glad that you feel that the risks were properly explained to you. The reason I wrote the post is to learn about others' experiences to see whether there are any similarities between my mum's experience. 

Just for additional background, it wasn't explained to my mum that she was a particularly difficult patient for radiotherapy until she walked in to begin her first session. She had large breasts, the target area was on her left, and she had asthma.

They tried deep inspiration breath hold which was very difficult for her because of her asthma especially, then when this didn't work after three separate visits, they built a chest plate for her. In 13 out of 15 sessions the team struggled to accurately fit the cast. Her sessions were always a lot longer than intended because of the readjusting they would have to do throughout the session. 

It does sound as though my mum was incredibly unfortunate with her radiotherapy experience from start to finish, from the methods attempted, perhaps the team working on her who sometimes caused great discomfort, and her burns which nurses described as some of the worst they've ever seen.

My main questions have been around radiotherapy due to witnessing her struggle, then since she passed, a couple of people in her circle have spoken about the same thing happening to someone they know. In her many visits to the hospital, their responses were constantly "it's a side effect of radiotherapy."

However, she also had aggressive chemotherapy which may have contributed - especially herceptin - which the potential heart damage was explained for. As my original post says, despite my mum not even finishing herceptin until August, her last ECG was in May and she never received any further checks to her heart. I'm interested to hear whether others have had similar experiences with this too. 

As we've said, there are risks and long-term side effects of treatment, which is why follow up care beyond the day this treatment ends and beyond the all clear is so important. This is my main concern. Had my mum been offered one extra ECG, they may have found damage that could have been acted upon to avoid a cardiac arrest. If this post encourages anyone to ask for an ECG - or any kind of follow up appointments - after treatment has finished to ensure that they can go on to live the happy life that my mum deserved, that's all I can hope for. 

Hello FEM,

This loss is incredibly sad for you especially but for anyone to read about. For me it was important to flag up errors of the system and help those who still lived in the Nursing Home where she spent her last 5 wks. You are absolutely right to unpick it to help the system improve for those special cases such as your Mother's was. Also to help yourself to understand and process it. I had some bereavement counselling when I was ready. I needed that outlet, I think my anger and grief stopped others from being able to talk to me. 

Some recover from grief in the timely fashion as in 2 yrs maybe. I learnt to live with it. My childhood made it harder, my Mother had a hard life. I love her just as much and do still talk to her. Have her picture on my night stand. I hope you eventually get some closure as they call it. Love never dies. Xxx

Firstly I’m very sorry to hear what has happened and for your loss.

in my case the risks were explained very clearly to me - I have Stage 3c lobular cancer with 21 positive nodes and proven lymphovascular invasion and they needed to treat under the breast bone with radiotherapy to cover the lymph nodes there.  They explained what to look out for in future but stressed it was a very low risk as the machines are much better now than they used to be and any effect was likely to be a long way in the future but I needed to be aware of it and ensure anyone I consulted in future knew about my radiotherapy was fully informed.  I also know that I am at very high risk of recurrence so the benefits for me of radiotherapy far outweigh the risks. Interestingly the team decided not to treat my arm out area as 27 lymph nodes had been removed and they felt that the added risk of lymphoedema for me outweighed the benefit, especially as I had already had accelerated chemo, so I did feel my case had been thought through carefully by the team who are experts which was reassuring.  

My cancer was misdiagnosed which led to a long delay in treatment - 7 months between being referred and getting the tumour, which had been growing fast, removed.  I knew there had been a catalogue of errors at the hospital and that this should not have happened (the consultant had already apologised) but like you I wanted to make sure that no one else was misdiagnosed and sent away…. When I was on the right place I used the hospital official complaint ls procedure and unemotionally catalogued the dates and what had happened then put in a final paragraph about the emotional impact on me and my family of never knowing if my prognosis would have been better if I’d had the right diagnosis as requesting to know what they would put in place to ensure this didn’t happen again.  The hospital investigated fully and responded to each point (all were upheld as falling short) but, most importantly, told me what changes had been made to ensure it didn’t happen again.  It makes no different to me but I needed to know it wouldn’t happen again.  I wonder if this might be a route for you when you are ready- I found it terribly emotionally draining to revisit the whole thing as I was part way through chemo but had to get it done as there was a year limit between the event and a official complaint.  They talk to everyone involved and draw out any learning points.  It was really thorough and I hope it makes a difference.