Lymphoedema in breast, advice and info needed.

Hi Lisa,  I did not have lymphedema after bilateral lumpectomies but have gone to a massage therapist who has done manual lymphatic massage and it feels good.  It is good for the lymphatic system as it gets disrupted after surgery.  Very light pressure is used.  I did have some knots that she worked on to release them and that was slightly painful but feels better now.  There are massage therapists that know the technique but you need to research.  I live in Florida.  You need to have ok from surgeon to do it as they don’t want all that massaging during treatment.  I would think your surgeon could help you with a resource or you can Google breast massage specialist and then research them.  Good luck.  
I saw someone who had surgery done for lymphedema but hers was very severe and she had it for a long time.  Looked like major surgery too.  Better to try snd manage it yourself with noninvasive treatments.  
Barbara

Hi Magpiebird, I have breast lympheodema as a side effect from my radiotherapy. I hadn’t realised that it could happen as the focus seemed to be on the arm, and I was hopefully low risk as only had sentinel node biopsy. I did all the post op exercises but realised, several weeks after rads finished, that the treated breast was bigger than the other. I knew that it had actually been the slightly smaller one pre cancer. I asked at my 10 week post rads follow up and the oncologist referred me to the local lympheodema service, where the specialist nurse confirmed that it was lymphoedema. Her advice was: massage - but like you I didn’t really feel confident; take up Nordic walking or aquaerobics. I chose the Nordic walking, did a course and I’m still doing it 3 years later! Her other advice was to get a fully supportive bra. I was still wearing post op front fastening bras, soft and comfy but virtually no support. I went to M&S and got fitted with supportive bras, and have stuck with them as they do seem to do the trick. I wear a sports bra for Nordic walking and my weekly exercise class/ gym session. 
When I had a follow up appointment, the lympheodema nurse discharged me as there was such an improvement. I can self refer if necessary but haven’t had to yet. 
Sorry for such a long ramble! Can’t recommend the Nordic walking highly enough, I love walking anyway and I’ve made a new group of friends! Swimming is also good, I go from time to time but not a big fan, I’d rather be outdoors. 
Do ask for a referral if you think you might be developing lymphoedema, it’s a less well known radiotherapy side effect. Love and hugs, HFxx 

Hello HappyFeet1Thanks for your reply.  Very similar path to you.  I had my radiotherapy in June after sentinel node biopsy only, during a WLE lumpectomy (having had neoadjuvant chemo for 6 months) - fit, active, healthy weight, assumed I was very low risk, although it was mentioned.  Lo and behold, subtle swelling appeared in Sept, initially dismissed by breast care nurse on phone, irritatingly, but picked up a few weeks later by my onc in a physical check up before my next round of chemo (having oral Capecitabine as adjuvant chemo, as I had triple negative bc).  I wonder if the chemo might be making it worse. 

I have a referral to the lymphoedema service tomorrow, so I was just really trying to inform myself before that meeting.  

Really interesting to hear about the Nordic walking - I will look it up.  I love hiking/walking so would hopefully suit me.  Have been wearing a crop top style sports bra, which seems to work OK.  Will investigate M and S.  Also been doing manual lymphatic drainage the best I can.  

I am a really active person, and the thought of having this uncomfortable condition as a permanent fixture feels like just another blow really - the gift that keeps on giving.... sigh.

Any lots to be grateful for - not least still actually being here!  And also the fact that you are discharged for now is really heartening news to me - thank you.  Hopefully, I will be the same. 

All the best for your continued health 

Lisa xx