Has anyone developed breast lymphedema after surgery and radiation?

Yes, and it is very difficult to deal with. I went to a lymphedema physical therapy specialist three different times getting exercises to do, learning manual massage and finally getting a pump. When I faithfully did the exercises every day I was relatively fine, but it wasn't gone. I had a flair up of the lymphedema after traveling and that's when I was able to get the pump. Everything needed to be documented by a doctor MD or nurse practitioner that I needed the lymphedema treatments before I could get any of the garments or pump to deal with it. I'm about four years Post surgery and I finally don't have the tightness and other issues that come with lymphedema in the breast and the axcilla. good luck to you. It's a long journey, but it's a worthy journey.

@reeno :

Please ask your surgeon or any physicians in your care team or your PCP (primary care physician) to refer you to see an occupational therapist, especially a specialized lymphedema therapist. My OT helped me tremendously in reducing my lymphedema swelling, aches and pain, she also taught me how to take good care of myself going forward.

Better journey ahead with hope, peace, and love alongside you, my friend!

@maggieb892
Hi, I'm very interested in the pump you talk about. Could you give details & a link of where to buy from.
Ive had breast & chest wall lymphedema for 2yrs & finding the twice daily manual drainage is not enough to control it.
My therapist caught me very well but im finding it hard to keep on top if.
Any further advise welcome.
Many thanks
Lilly

Yes to all of above
Get to a lympodema therapist who specializes in breast & chest wall lymphedema as they have specialist treatments to reduce the swelling.
I had a 8week corse & it made such a difference.
They also fully teach you a regime thats specific to your particular problems.
There is also basic videos on utube that are a good starting point. Its done by the ROYAL MARSDEN major cancer hospital in London. Its perfect for showing the slowness & technique of massage to move fluid away. Take a look.
Ive seen on here that a lady has a pump so ive asked for info about this too.
Basically once you have a routine & the major swelling is under control you will find it simpler & easier to keep under control.
I am struggling to do the daily treatments due to other health issues & shoulder dislocation. Otherwise I would be coping ok.
Hope you get the treatment & help asap. Good luck

@brightside21
I can tell you that insurance will cover some or all of the cost. They need a dr who has seen you and diagnosed the lymphedema to verify the dx. My physical therapist ordered and arranged for the pump. I live just south of Denver CO. LymphaPress was the company that provided my equipment. Other regions use different providers.
I followed Klose lymphatic drainage on YouTube for upper body lymph massage. I also bought a Swellspot garment to wear at night. I wrote it under a compression tank top at night. What advice has your pt/ot given you beyond the massage?

Yes, I had a sizeable lumpectomy in July 2024 and the packet of lymph nodes removed as well. 16 rounds of radiation. I have the pump and that helps more than other compression/massage techniques imo, but I also just had my reconstruction last week and my surgeon removed some necrotized fat and grafted new fat into that breast to hopefully help with swelling from lymphedema. It feels like a forever fight. Still healing from surgery so not sure yet if those additional steps. I’m sorry you’re dealing with this too - a lot of things post-cancer you never dreamt would be part of it.

@maggieb892
how long after your initial surgery did the lymphedema develop? How many lymph nodes were removed? Does it affect your arm as well? I am nervous about this side effect!

@crspedsrn
I didn't notice the swelling for a while since I was told the swelling was from the surgery. I had one lymph node removed, and had radiation. I don't have lymphedema in my arm.
My lymphedema is manageable with exercise, self massage and the use of the pump.
I was told that lymphedema can occur at any time. I wouldn't be worried and avoid a treatment to avoid lymphedema. It will happen or not. All you can do is have a toolbox of aids to help

@maggieb892
thanks so much

@maggieb892