Post Radiation Problems
Post Radiation Problems It will be 3 years in June since I was diagnosed with breast cancer. I had a mastecomy, chemo and then radio. The treatment finished in Feb 2004. Since then I’ve had a whole load of different health problems and I’ve never got to that wonderful stage of being able to put everything behind me.
This year, I have been diagnosed with Post Radiation Fibrosis as a result of my radio therapy treatment. I’ve been told it is a type of pulmonary fibrosis, it is not going to be cured, and it is not going to get better. All they can do is offer steroids to control some of the symptoms. I’ve been through the usual range of websites and I’ve yet to find one that indicates I will have a good out come with this.
Does anyone know how common this is for breast cancer patients as I can’t really find much on this from a breast cancer patient perspective?
pulmonary fibrosis is pretty rare due to better planning and machines which direct radiation better, however people have different anatomy and tumours can be in awkward places to treat. Apparently there is always a small area of the lungs affected by rays but it isn’t normally significant except to tell anyone if you have a chest x ray as it will look different on this.
You must be unlucky
Mole
More common I think this is more common after radiotherapy than is reported, as well as minor lung damage (which I have, meaning I have a persistent chronic cough) which is irreversible. Studies in the US have shown that patients who are taking Tamoxifen during and immediately after radiotherapy are more likely to develop this than those not taking it - and this is something I think should be communicated to patients, giving them the option to start taking it later. However I don’t think this protocol is included in any BC treatment regimes I have ever heard of, in the UK at least.
Has the hospital which gave you your RT treatment been made aware of your diagnosis? They certainly should be as although it may be unavoidable in some cases (as Mole says, everyone’s anatomy is different and some tumours difficult to target), it could indicate lack of careful planning and should be something they look out for in future cases.
Sorry you are having to suffer this - it’s just insult to injury isn’t it - good luck for the future.
More common Hi Carling
I think you are probabley right about this happening more often than it is reported. However, my breast care team were not interested when I told them. I had symptoms of coughing and extreme breathlessnes for several months, and I eventually went to my GP. I had been in Egypt at the end of the year and wondered if I’d picked something up there. My GP referred me to our local hospital and followign the x-ray results, I asked him to refer me to a specialist as we have health insurance.
I did contact my breast care nurse (my cancer was treated on the NHS), who told me I was doing the “right thing” with our health insurance. She did not suggest I returned to the breast care clinic so they could investigate it.
Unfortuantely at my hospital there were no checks after treatment to see if anything had been damaged. I know during radio the thin layer of silicone they use as protection used to fall off. I could speculate, as to why it happened to me but I don’t.
When I was diagnosed, I had 5 tumours , 13 out of 15 lymph nodes, and grade 3, it was explained to me that the 10 year survival stats were very poor because people go on to die of other things. I’ll be 45 this year and I can’t help but wonder whether they were meaning people in my situation.
your situation I think they were saying that you were in the unfortunate position of being likely to get secondary breast cancer. This can lead to problems in the lungs - i.e. cells from the cancer spread into the lung tissue and compromise the function of the lungs. I am afraid if I were you I would be going back to the clinic for investigations into this possibility, given your symptoms (breathlessness for example)
Mole