Help! I’m looking for some positive feedback as my anxiety is in overdrive reading about all the possible late side effects caused by radiation!
I completed my 20 sessions of radiation a couple of weeks ago post lumpectomy for stage 1 IDC (no chemo needed but will start Tamoxifen). Skin rash was not too bad but I do have some swelling and fibrosis that started after surgery.
I was very apprehensive and nervous about doing radiotherapy to begin with but since I am only 40yo, all doctors advised me to do it to prevent local recurrence. Now I want to make sure I am doing everything I can to heal properly and avoid any long term damage. Radiation fibrosis seems to be very common and quite debilitating. Not to mention other more serious side effects.
I would love to hear some advice from women who are 1+ years after radiation and are doing well. What did you do to prevent fibrosis and pain and maintain your breast appearance?
I’m a year post radiotherapy, had 15 fractions to whole breast plus 4 boosts to tumor bed - 48 grays in total, so quite a bit. It’s been an interesting journey. Only last Saturday a new phenomenon of petechial rash appeared. Its not getting any worse and maybe improving, so hopefully just a blip.
I’d recommend keeping up with arm stretches for months after. I go to the gym but slacked off for 2 weeks over xmas ( about 4 months after by then) and developed a cord, which snapped on stretching- was so much better after. Got another cord in March that I got rid of with some deep massage. No cording since. I do do 2x daily massage as have some breast oedema (peu d’orange). That seems to vary ( not too bad this evening, might be as went to the gym this aft).
This might all sound a bit grim, but I think I’m unlucky to get bits going on and its all manageable. No arm lymphodema, got full movement, I lift weights these days and up to running half an hour on the treadmill.
First few months you can expect some zappy sharp nerve tingling, but its over in a flash and they calm down and go.
Bear in mind that, although I’s say Ive had my fair share of late effects, I am quite a bit older than youself ( 54 now) so that might make the difference. I saw a stat somewhere of about 27% having late effects,
I’m sure there will be lots of replies from other people who have been fine - my mother for 1, and a friend I have, sailed through it.
I would second the advice to keep up the arm exercises - I’m 3 years post - treatment and still do them now and also do Yoga and swim which again helps to stretch the tissues. In the few months after treatment I did pull something down my affect side doing an ordinary Yoga stretch- there was tightness there without me realising it , from the treatment . I would advise stretching gently and increasing intensity - we all tend to be a bit impatient . I still feel there’s a little bit more tightness down my affected side and there probably always will be.
Keep up the miosturisation - the skin on my treated breast isn’t quite the same as on the other one . Earlier this year I got very dry skin after a lot of swimming and the dryness was more noticeable on my affected breast than anywhere else though it quickly responded to intensive daily moisturising . The skin on and around your affected breast may look the same as the rest of your skin but it will always be a bit more delicate. Xx