Oedema in surgical breast after Radiotherapy

Hi , you’re never alone here, somehow there’s always someone who’s had or is having a similar experience. I have mild lympheodema in my breast which, like yours, developed after radiotherapy. It’s not often mentioned as a possible side effect although I did eventually find reference to it in the booklet I was given pre rads. Think it’s published by Breast Cancer Now. But I had to search as it’s certainly not under any list of ‘common’ side effects that I’ve seen. I raised the issue at my post rads oncology review (10 weeks after, don’t know why it was so long after!). I queried why the breast that had been ‘scooped out’ was bigger than the other, especially as most literature suggests that your breast might be smaller after rads! I also showed them that my bra seams left deep ‘pitting’ on the affected side. I was referred to the lympheodema service and the nurse there confirmed mild lympheodema. She showed me some self massage I could do (which I didn’t really get the hang of) and advised me to a) get a more supportive bra - I was still wearing soft post op bras with very little support; and b) take up Nordic walking and/or aqua aerobics. I chose the Nordic walking and it really made a huge difference. Apparently it’s highly recommended for people after breast surgery as it’s such a good upper body workout and gets the lymph moving. 
I don’t know if any of the above will be helpful for you or maybe you’ve heard it all already. I do count myself lucky as it’s ‘mild’ but would of course prefer not to have it at all. I too have the orange peel effect but only on the lower half. My nipple suffered the worst and was so painful during and for weeks after rads. Eventually a huge scab fell off (sorry for tmi!!) - I thought at first that my nipple had come off! - but it was actually a relief. It remains inverted and a different colour, as well as more sensitive, but not painful as such. I’m nearly 3 years post op and finished my 3 weeks of rads in January 2019 so am further down the line than you. It does improve! Wishing you well and sending a big but gentle virtual hug your way, HFxx

Hello HappyFeet,

Thank you so much for replying to my thread, 

I too am doing various exercises, ones given post surgery leaflets and because I'm taking anastrozole, (known to cause joint pain) which I'm experiencing also have taken up walking with a group twice aweek, finding this helps alittle with the fatigue and joints etc

Along side this i am having physiotherapy for auxiliary web cording in surgery arm also, this has been on going since March, another cause of lymph node removal  symptoms....

My I ask you, as you said your treatment of rads finished in January 2019, have you seen a visual improvement of the swelling/oedema to your breast, my oncologist just said it would slowly go, approximately taking 2-3 years, until the fluid final finds an escape route, via the nipple itself or through the pores of the breast, has this been your experience or not as yet? I know everyone is different and experience different symptoms in stages, I'm just trying to put a smile on my face and try and deal with this, but it's so hard, just another constant reminder that I've had breast cancer....

Another problem I have is finding a bra to fit both breasts lol 

I too am sending a gentle hug to you, be safe and take care

Daisyjane x

Hi , yes I’d say it’s definitely deflated a bit and there’s less ‘pitting’ from seams now. I’m also on Anastrozole, like you, and find walking helps with the fatigue and joint pains. That’s good that you’re getting physio, hopefully the exercises for the cording will also improve things for the affected breast. And yes we keep smiling but the physical effects and the daily pill popping don’t really let us forget!! Love and hugs, HFxx 

Daisyjane,

You poor thing. I have experienced the same since radiotherapy. Have you tried kinesio tape (like what the athletes use)? I was shown how to cut it (by physio department, like origami!) and it eased it immediately. Unfortunately, I was allergic to either the tape or adhesive so had to stop but still trying to find one that I don’t react to as it immediately helped? It was incredible.  I also have a special corrugated piece of foam which I place in my bra next to the especially hard bits which helps to ease this and a compression bra which is uncomfortable (think Spanx for the chest area) but does help? I got everything on the NHS. Let me know if you want any further details of any of these? 

warm hugs,

Bekky

xxx