Hi everyone, I wonder if anyone has had or is having a problem with breast fluid retention ? I am now about 8 weeks post radiotherapy, (2xWLE’s and sentinel node biopsy) and I am having lots of discomfort with excess fluid in my breast. Been to see my breast care nurse, and I am being referred to a clinic for manual lymphatic drainage. Has anyone had this, and hoe successful is it? I have been under the impression that the swelling was ‘normal’ and would subside eventually- I am told that it could take weeks/months or even longer due to buildup of scar tissue and the effects of the rads. Please can someone tell me their experiences with this. Also, anyone know about breast lymphodeoma and what effect long haul flights have ? I am so confused and feeling so miserable at the moment, please someone reply soon! Jenny x
Hi Jenny
I’m sorry to read you’re having a tough time at the moment. I’m sure some of the other users will be along soon to offer you their experiences and support.
Whilst you are waiting you might find it helpful to talk through your questions with a memeber of staff on the helpline. Here you can share your concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to friday 9 to 5 and Saturday 10 to 2.
Best wishes Sam, BCC Facilitator
Hi, I only wished someone had told me about this as I was in the same place at about the same time as yourself. My breast was much larger than before surgery and I opted for excerce to help it get better, which it eventually did after several months. ( I felt I had attended way too many hospital appointments!) The discomfort was not my main concern, I was just worried the cancer was returning as it was only via the internet that I learned about lymphodema in the breast. Mine is just about back to normal now
Hi, I don’t think long haul flights are a problem, though I haven’t had one. Any other precautions are normally to prevent lymphoedema in the arm. With the breast and trunk, it’s more a case of a blockage resulting from surgery and radiotherapy. I am in Germany and my gyn saw the lymphoedema in the routine ultrasound of the breast, but he didn’t know it could be treated. I didn’t get MLD for a year, then it helped. The problem is that lymph is like egg white and if it collects for long enough it gets harder and needs more MLD to loosen it up. That’s why I eventually got swelling and pain in my side and back. I’m not dreadfully convinced that all the therapists I’ve had over the years (five now) have given me the right treatment. It’s a bit better now but it was bad for ages. As with the arm, MLD tries first to drain away the lymph over other pathways in the opposite armpit or the groin, and there has to be treatment of the back too, and if the breast has got hard there are special deep movements to loosen the obstructions.
Hi Im 2 yrs post op and chemo and radiotherapy, and i have lymphodeoma of the breast. my consultant has seen it and is not worried about at all. It has gone down slightly but don’t think mine will go down much more. My consultant told me to go swimming and also to massage the breast, to help the fluid drain away. Hope this helps.
I had a WLE L breast, chemo and rads which finished in Feb this year. I have had a swollen L breast since surgery that gradually got worse. I was referred to my Lymphodema Nurse in April. I maily wear wire free bra’s (well fitting/ lots of supprt) and had Kinesio taping and a course of MLD. It has helped the breast feel less heavy and I do the massage and body brushing once or twice a day too. They say it will get better over many months, maybe years! My main concern was to try and ensure my arm is not affected. I only had 3 lymph nodes removed too.
Good luck with the MLD x
Hi Jenny, my name is Lynn. I finished chemo, lumpectomy & lymph removal and radiotherapy in Dec 2012. I went back to work full time as a college teaching assistant in Jan 2013 and only had few twinges and bit of swelling/mild pain. I still have numbness in upper inside arm and armpit and the odd ache down the arm, but although I could cope with this, today it is more painful and I am contacting my nurse tomorrow as its a bit worrying. I am struggling big time with anxiety and some depression and the worry of it coming back but I am afraid to tell any friend or family as I don’t want them to worry and don’t want sympathy! Its a dark place I thought I would be out of by now and it scares me, I have been drinking a lot (red wine, almost a bottle a night…even through my treatment) and I know this is a problem I need to sort out, but I don’t want to go on antidepressants. I am thinking of seeking counselling but thought come on here first and chat to like-minded people going through the same thing? Hope I haven’t depressed you more! Maybe we can support each other? Take care, Lynn