Hi everyone,
I'm new to the community as I'm looking to investigate others' experiences of heart complications due to chest radiotherapy, and perhaps chemotherapy, after losing my mum due to a cardiac arrest in December 2022. I'm particularly interested to hear whether you feel that the potential heart-related consequences were sufficiently explained to you prior to starting treatment, and the details of any heart consequences you have experienced.
My mum was diagnosed with HER2 positive breast cancer in May 2021. She had Epirubicin and Cyclophosphamide, Paciltaxel, Pertuzumab and Trastuzumab. She had a lumpectomy and 15 rounds of radiotherapy.
She was cancer free before she began radiotherapy and had a terrible experience with the treatment. Her burns were so bad it looked as though she had been in a fire. In the beginning, her lumpectomy scar was better than expected, but it seems that the burns and damage from radiotherapy led to her developing cellulitis and 'borderline sepsis'. She was hospitalised and almost certainly prematurely discharged.
Despite her suffering, she still looked incredible and was looking forward to the future. She officially retired on the same day as her 65th birthday and was beginning a new chapter. Then, shockingly, 12 days later on December 4th 2022, she suffered a cardiac arrest and passed away.
She had no heart problems throughout her life and her ECGs were fine during treatment - at least that’s what she was told. The last ECG she received was May 2022 - three months before finishing herceptin and seven months before she passed.
She had no major symptoms to suggest heart damage. She did experience the occasional stabbing pain in her chest from around mid September, which nurses claimed to be a radiotherapy side effect and the consultant passed off as a potential hernia. He also claimed the pains in her shoulders were just another radiotherapy side effect. This was the week that she died.
For the 1.5 days before she experienced a cardiac arrest, she was having occasional light chest pains with the feeling of indigestion. The chest pains only increased in intensity and speed for around two hours before she died.
Initial postmortem findings seemingly showed coronary artery disease and left-sided heart failure. Further testing is being carried out, but given the extent of radiotherapy damage to her body, it seems unlikely that treatment did not contribute to her passing.
Since then, I have been reading more about heart damage as a result of common cancer treatments. It concerns me to read that cardiovascular disease is the leading cause of death in older women who survive breast cancer, and despite the apparent knowledge of potential cardiac damage for breast cancer survivors, this risk does not appear to be sufficiently explained. It certainly wasn’t thoroughly explained to my mum.
My intention isn’t to scare anyone that is currently undergoing or has finished treatment - I know that everything is overwhelming and scary enough without having to think of consequences unrelated to the cancer itself. But my mum only survived for three months after officially completing her treatment. We had no idea of any damage to her heart or this likelihood, because even before her treatment had stopped, so did the ECGs.
I want to ensure that those of you currently undergoing treatment are provided with heart checks not just throughout this time period, but also to request ongoing checks after treatment has finished. If you haven’t started radiotherapy yet, I want you to have the opportunity to ask your consultant in detail about this problem. Depending on your progress, the answer you receive may sway your decision whether to go ahead or not.
It feels so cruel and unjust for this to be what stole my mum after everything she went through, and I simply don’t want anyone else or their families to experience the same pain and premature loss of life. Any information or experiences you have would be greatly appreciated. Thank you. X
Hi FEM and a warm welcome to the Online Community but so sorry to hear about your diagnoses.
I see that you have posted this on the Breast cancer group so that will get answers from people who had the exact same treatment journey.
I have lived with and been treated for rare incurable blood cancer since 1999. My condition became very aggressive in late 2013 so between Sep 2013 and Oct 2015 I had 6 cycles of R-EPOCH chemo (750hrs), 45 radiotherapy zaps and two Allo (donor) Stem Cell Transplants (June 2014 and October 2015)
During my very last half hour chemo in Oct 2015 I ended up in the CCU unit with heart problems (I had no history of heart problems)…… I went on to live with AFib then in April 2022 I had a heart attack but two stents later and now on a lot of heart meds I am doing great…… this was all put down to the treatments I had had over the years and the damage to my heart.
But for me it is a small price to pay as back in late 2013 I was told that if my treatment plan did not work I would have a few years…….. but I am over 7 years past that deadline and living the dream.
