Lymphedema in Breast

Wow thanks, fascinating what they think of isn't it?

When I phoned the BCN this week she was surprised that I had not been given any advice re lymphedema or been offered an appointment with a bra measuring expert who apparently comes to the hospital twice a month!

Definitely fall through the gaps when several dept are needed, the oncologist doesn't seem to communicate with the BCN or surgeon or even the radiologist! I feel like I have to pester people to try and figure out what is normal procedure and what help is available, some days you just don't feel up to it so you?

To be fair, once referred to the lymphedema clinic they phoned the same afternoon to arrange the appointment.

Yes it is

Think they're quite expensive too,if you google them

Pitpaks

Yes I saw a bra fitter several months after my radiotherapy had finished,she gave me a prosthesis to wear in my bra,my left breast is quite a lot smaller than my right one

Thanks 

I’m googling but not finding them … can some one give me a link please ? Thanks 

Hi BexF , lots of great replies already. Just wanted to add my experience of breast lympheodema. Glad you’re seeing the lympheodema clinic next week as you should get specialist advice. In my case, the things that made the most difference,  from recommendations from the lympheodema nurse, were - getting a properly supportive bra (I’d been wearing post op bras since surgery, nice and soft but not much support); and taking up Nordic walking - she recommended this or aquaerobics - there’s something about the Nordic walking technique with the poles which seems to be very good at getting lymph moving! Very different from just using regular walking poles. I signed up for a course after my appointment, and I’m still doing it 4 years later. The nurse also showed me some simple massage techniques but I didn’t seem to manage it very well. But others have found it really helpful. Like you I’ve had nipple problems and although resolved to an extent, it’s still partially inverted and paler than the other. Very odd, I think that it started with the injection of dye which was done once I was under the anaesthetic, and then radiotherapy seemed to finish it off! It was so sore for weeks after and had gone pretty much black, then a huge scab fell off (sorry if tmi) and it felt a bit better, but what emerged was inverted , almost closed, and weirdly pale. Anyway, sorry for the ramble, I’m sure the lympheodema appointment will be really useful and I’ll be interested in the outcome. Love and hugs, HFxx

Hi Bexf

Ive struggled with various symptoms. I like Jen McKenzie The Breast Cancer Physio on YouTube for information. Check out  her videos on radiation fibrosis scarring. I use mobiderm which she recommends (like pitpacks or at least same idea). You can get pads online from Thuasne. I like 5mm as find 15mm too bulky to wear inside bra. Everyone should get information on the possible side effects before radiotherapy and how to prevent/manage them but it just doesn’t happen for most of us Good luck. xx

I watched Jen McKenzie on YouTube and she is so informative.  Still go to her channel for updates etc 

Hello. I just found your group. I live in San Jose, CA USA.

I have been diagnosed with radiation induced breast lymphedema, and have mostly been holding it together. I get fitted for custom compression bras and swell spots tomorrow. My breast has the peu d'orange appearance and the arreola is painful and hard. I have been doing research about a microsurgery that can be done to circumvent the lymphatic system and connect the messed up areas to the venous system. I massage daily, but it only provides temporary relief. Does anyone know if having a mastectomy would help rid us of the pain, swelling and discomfort? This is miserable. So glad to have found this group.

Hi There

I have developed radiation induced breast lymphedema in one breast. I had a lumpectomy in July of 2023 followed by 4 rounds of chemo, 3 weeks apart. I had a month off, and then 16 radiation sessions that ended the day before Thanksgiving 2023. In February 2024 I had surgery to drain a seroma where the original lumpectomy was done. The space never collapsed after surgery. It filled with fluod, and that fluod essentially was cooked during radiation. The breast is swollen, and hard in parts. It has a peu d'orange appearance and the arreola is hard. I have to do manual lymphatic drainage multiple times aa day. I will be fitted for a custom compression bra and swell spot tomorrow. I take Pentoxifyline 3× a day. It is paired with Vitamin E during my morning and evening dose. I was researching a microsurgery that can be done to reroute the lymphatic system to the venous system. It is an outpatient procedure that requires little down time. A dye is injected to help guide the plastic surgeon as to where the breakdown needs repair. I am struggling with this diagnosis, but so glad to have stumbled upon this thread. Has anyone had the surgery?