Surgery for Lymphoedema?
August 23, 2018 1:33 PM Subscribe
A friend has secondary lymphoedema of her arms and legs, following breast cancer, and has permanent swelling. She finds it especially bothersome in her arms as it makes it difficult to find clothes that fit. She's wondering whether surgery to remove the fluid would do any good - or would it just build up again? Any experiences of surgery or other advice welcome. She is in the UK.
Best answer: I'm very sorry for your friend. This is a subject I'm very familiar with, as my best friend currently has serious, life-threatening lymphedema related to ovarian cancer. I'm in the US, but this is what I know:
-- Surgery for lymphedema is in its infancy, and mostly in the trial stage. It's especially problematic in cancer patients, because docs are wary of accidentally surgically transferring any remaining/hiding cancer cells to a new part of the body, thus causing greater havoc.
-- There are lymphedema drugs in early trials now.
-- In the US we have a medical trials database -- dunno if you have similar, to try to track down if there are research institutions in the UK where your friend might find treatment, which might include surgery, drugs or a combo.
-- If she isn't already, she should be getting lymphatic massage ***not from any type of general massage practitioner offering alleged lymphatic massage. She should be receiving it from a health care professional with ***genuine, proven, medical certification in lymphatic massage. There are many people barely above the level of charletan who advertise themselves as doing lymphatic massage. This is not appropriate for post-cancer lymphedema patients. Proper acronyms to look for in the US include: CLT meaning "Certified Lymphedema Therapist"; LANA -- "Lymphology Association of North America"; and sometimes DPT = Doctor of Physical Therapy.
-- Proper lymphedema compression garments are hugely important, but again, these are not the garments you can find for purchase online, or "compression stockings" or the like. Specialized garments, fitted by a professional who specializes in lymphedema, are the only thing that will help.
My sympathies to your friend. Lymphedema is no joke.
posted by BlahLaLa at 2:14 PM on August 23, 2018 [1 favorite]
-- Surgery for lymphedema is in its infancy, and mostly in the trial stage. It's especially problematic in cancer patients, because docs are wary of accidentally surgically transferring any remaining/hiding cancer cells to a new part of the body, thus causing greater havoc.
-- There are lymphedema drugs in early trials now.
-- In the US we have a medical trials database -- dunno if you have similar, to try to track down if there are research institutions in the UK where your friend might find treatment, which might include surgery, drugs or a combo.
-- If she isn't already, she should be getting lymphatic massage ***not from any type of general massage practitioner offering alleged lymphatic massage. She should be receiving it from a health care professional with ***genuine, proven, medical certification in lymphatic massage. There are many people barely above the level of charletan who advertise themselves as doing lymphatic massage. This is not appropriate for post-cancer lymphedema patients. Proper acronyms to look for in the US include: CLT meaning "Certified Lymphedema Therapist"; LANA -- "Lymphology Association of North America"; and sometimes DPT = Doctor of Physical Therapy.
-- Proper lymphedema compression garments are hugely important, but again, these are not the garments you can find for purchase online, or "compression stockings" or the like. Specialized garments, fitted by a professional who specializes in lymphedema, are the only thing that will help.
My sympathies to your friend. Lymphedema is no joke.
posted by BlahLaLa at 2:14 PM on August 23, 2018 [1 favorite]
Best answer: So sorry for what your friend is going through! Lymphedema surgery isn't to drain the fluid--as zdravo and BlahLaLa mentioned, it's a complicated microsurgery that involves transplanting lymph nodes into the site of the damage. The swelling is a result of the lymph nodes in the area being damaged.
My loved one with lymphedema has had good results from lymphatic massage and compression--doing the massage themself nightly after being trained by a specialist, and wearing a compression sleeve over the affected areas. Here are some other treatments that might be helpful to discuss with the doctor.
posted by assenav at 2:17 PM on August 23, 2018
My loved one with lymphedema has had good results from lymphatic massage and compression--doing the massage themself nightly after being trained by a specialist, and wearing a compression sleeve over the affected areas. Here are some other treatments that might be helpful to discuss with the doctor.
posted by assenav at 2:17 PM on August 23, 2018
Best answer: I know someone who just had this surgery (a fellow breast cancer survivor) but she’s only a month or so out so it’s hard to say what the results will be. You might have some luck posting this question on breastcancer.org - their message boards are very active and were a lifeline for me during and after treatment.
posted by something something at 7:17 PM on August 23, 2018
posted by something something at 7:17 PM on August 23, 2018
Response by poster: Thank you. This is all very helpful.
posted by paduasoy at 8:35 AM on August 25, 2018
posted by paduasoy at 8:35 AM on August 25, 2018
there will be a clinical nurse specialist for lymph-oedema attached to her oncology team, she needs time with that person.
posted by Wilder at 2:24 AM on August 27, 2018
posted by Wilder at 2:24 AM on August 27, 2018
Response by poster: Thanks, Wilder. It was something like 15 years ago she was treated for cancer, so she's not currently involved with oncology, but she may see if she can be re-referred.
posted by paduasoy at 1:21 PM on August 27, 2018
posted by paduasoy at 1:21 PM on August 27, 2018
This thread is closed to new comments.
She might want to search for a massage therapist who can perform manual lymph drainage massage, a specialty designed for cases like this. I have oncology massage training but don't do specific lymph work, although I know clients who had success with it. If I were her, I would try the manual therapy approach first before undergoing a microsurgery such as having lymph nodes transplanted to the area, if only because surgery always comes with more risks. Unfortunately I don't know enough about the surgery to be able to say whether her symptoms are likely to return or not.
posted by zdravo at 2:08 PM on August 23, 2018 [3 favorites]