Does everyone have this or is it just for Tiple Negative breast cancer?
I’m concerned about whole breast radiation as the consulting radiologist told me there would be long term permanent damage to the lung a minimum of 1cm top to bottom. I can hardly believe I am being told the treatment is going to damage my lung further, not to mention my bones.
I wonder how many have been told the same as me.
I wonder if everyone has whole breast radiation.
Grateful for any replies.
I already have COPD and osteoporosis, having the treatment is really worrying and I just cannot decide what’s best for me long term. I am 66 years now, I want to try and preserve quality of life after the surgery which they tell me was successful, all margins clear, no cancer in lympth and now cancer free.
I really feel for you Astra. It can really feel like one dilemma after another to worry about with little respite in between. I can understand your concerns. My breathing has never got back to pre Breast Cancer levels but it wasn’t the radiotherapy that did it.
I am not an expert and I obviously do not know your specific details, however is there a particular reason why they would say that you would have permanent damage rather than there is a risk that it may happen. My understanding is that lung damage is usually a possibility rather than a definite, and that the risk may be higher in people with pre-existing lung conditions.
Effects of the damage may be imflamation which may clear up or more rarely fibrosis. It is said that Lung damage is less likely these days than in the past due to better technology and techniques. I have attached a link for you about side effects.
As far as I know whole breast radiation is not recommended just for people with TN breast cancer.
My understanding, from NICE guidelines is that it is usually offered after lumpectomy, sometimes with an extra burst to the tumour bed. Partial or no radiotherapy may be considered/offered in certain circumstances that take into account risk of recurrence, age, low grade, size, node negativity, being only hormone positive and that hormone treatment will be undertaken for at least 5 years, as well as the type of cancer.
Have you had your radiotherapy planning appointment yet? If not this would be a good time to go through risks and concerns again about how any side effects may affect you individually e. g. The possible specific impact on breathing capacity. If you have had your appointment, then just ring them up and ask to go through things again if that would be helpful to you in making a decision about treatment.
I was just told I would need to inform any future radiographer that I’d had radiotherapy as I would have a shadow at the top of my lung which was unavoidable damage but was unlikely to lead to any chest problems. I was never asked to adopt the breathing technique for left breast treatment, so maybe the jury is out on its efficacy. Slightly more alarming was the comment that, though they shielded it as best they can, the edge of my heart would be affected but, again, it need not mean I’d be more prone to angina. I weighed up the pros and cons but, as another oncologist had said radiotherapy was the most effective of all the treatments, I didn’t hesitate to go for it. Having said that, I was heavily node-positive, so maybe the risk for me in skipping the treatment was higher.
What I can say is that, after 15 blasts to the whole breast area, the lateral whatever (side of the boob-site) and collarbone, I have experienced no chest problems whatsoever. The worst I had was a small itchy patch on my front and back and, weeks later, some radiation pain in the muscles which is slowly wearing off. And a bit of a gruff voice. Compared to chemo, it was a walk in the park.
Your radiologist did express the risk in somewhat alarmist language! I found this happened during chemo when one oncologist rather scared me - he was mortified and apologetic when I told him the following week and went through everything really carefully again, completely reassuring me. Given your existing health problems, I’d get back to your oncology team and express your concerns. Maybe they’ll help you make a fully-informed decision. What we think is based solely on our personal circumstances and we’re all different.
I hope you’re able to make a decision you’re happy with. Good luck,