Hello, I finished radiotherapy June 2020 I had the shorter version (10 days total). Prior to that I had 8 rounds of chemo and a lumpectomy with therapeutic mammoplasty. My breast and the area around it ( chest, collar bone underarm) has been tender ever since rads. Recently it’s been getting worse, it all feels tight and sore. I thought it might be lymphodema but speaking to my breast care nurse over the phone she said is not because I don’t have any swelling. She didn’t seem that concerned about it. Anyway I’ve been doing a bit of research and I’m pretty sure it’s radiotherapy induced fibrosis (tightness and thickening of the tissue/muscle)Anyone got any experience with this and what can be done? Anybody know where I can buy some mobiderm foam pads? as I’ve heard it can help break up and soften the damaged tissue. Can’t seem to find it anywhere.
xxx
Hi Blackcat. I thought I would share my experience if it’s of any benefit to you. I was diagnosed with BC in 2017 and had lumpectomy, radiotherapy and I am on hormone treatment. About 6 months after my operation I noticed swelling in my arm (same side) and was referred to the lymphoedema clinic. They confirmed that I have lymphoedema in my fingers, hand, lower and upper arm, breast and back. My breast is very lumpy and firm with no obvious swelling in the breast but I can see swelling to the side/back. Unfortunately the only treatment I am given is a compression sleeve for my arm. I see that Jobst (USA) do JoVi pads that are inserts for your bra but cannot see a UK site that offers them. Maybe you can ask your Breast Cancer Nurse for a referral to the lymphoedema clinic as this is the only way for sure to see if you have lymphoedema. I am sure the specialist nurse would also be able to give you advice on compression bras (I would have to fund myself) if appropriate. Michele x
Hi Blackcat, I can relate to your description of the tenderness and firmness in breast tissue. My treatment ended a few months ahead of you. I carried on accepting that the feeling was totally “normal” “to be expected, post treatment” discomfort. May be it was, but around October 20 I felt strange tingly almost electric shock feeling too …sometimes round my trunk/ribs. Still Breast Nurse reassured normal. Finally in Jan this year I started realising I had slight “ripples” on skin under breast and a funny “pouch” round at my back (one side that disappeared by morning to reappear at night ) no obvious arm swelling…again sought advice …to be told it was nothing significant wasn’t “pitting” so not lymphoedema…and I’d possibly put a little weight on. I finally saw oncologist who agreed for me to go ahead and attend an appointment with a lymphoedema nurse specialist. (Privately as no offer of NHS referral was offered). Upshot, I did have early lymphoedema and a few sessions with her really helped with that breast discomfort ! She gave me a couple of compression bras which I lived in for weeks. I’ve tried quite a few elastain vests things and some longer line sports bras have been good. The best yet for me has been the sweaty Betty stamina longline sports bra. ( Wait for their sale ) …re the mobiderm pads (if they are what I think) …some folk make themselves …use foam from an old cushion cut up into small chips and fill a soft piece of material and situate in bra to use over the more troublesome spots. I do self lymph drainage daily now ( she taught me right routine for my issues). Therapist also used an oscillation therapy machine that really loosened that tight tissue around wound site etc. I hope you get relief …but I agree please push to see lymphoedema specialist. Good luck.