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@sandyjr

I am curious about who found your lymphedema and who monitors it. Does your oncologist or surgeon get involved? The cancer center that I go to makes you see their surgeon on a regular basis who is supposed to take care of the “physical part of my cancer” whatever that means. She is not the surgeon that did my surgery. She examines my breasts and orders my mammon’s. I cannot figure out why the oncologist cannot do this….Anyway, I have mentioned my concern about lymphedema to both and they show no interest and will not go there. I would think that is part of the physical part of my care. Anyway, I recently had a CT scan and the technician that set up my IV had the tourniquet on too tight (I kept telling him it was too tight, but he would not loosen it) and it was on way to long…I know over 10 minutes….maybe 20. Since then I can still feel the place where the tourniquet was and my hand and wrist are definitely swollen. My breast also seems swollen. I will be seeing the head of oncology for that whole health system early in July and if he blows me off, I am out of there. So, who can tell me if I have a problem?

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Replies to "I am curious about who found your lymphedema and who monitors it. Does your oncologist or..."

Sandyjr, I strongly encourage you to get a referral to a certified lymphadema therapist( usually a physical or occupational therapist or possibly massage therapist).

I complained of arm and hand swelling about 6 months after my surgery. It was on going. My oncologist and surgeon said….it couldn't be lymphedema because they only removed one lymph node (hmmmmm) so I insisted on seeing physical therapy and massage therapy myself via my surgeon. After another couple of months, at a regular oncology visit my doctor noticed the swelling (finally) and put in an actual referral and recommended my surgeon revisit my situation. That is when I had a second surgery to remove additional tissue which helped a great deal.
You know your body and you will have to push them to address your concerns. Sometimes a lymphedema specialist can look and see better what is happening. There aren't many (unfortunately). I got lucky with a great massage therapist in my doctors practice who sent my records to the doctors and confirmed my lymphedema. I would press your doctors further and don't worry about 'hurting their feelings' or going against their opinions here. Not all doctors are very informed or concerned and you want to catch it early if possible….it's easier to treat and manage.
Keep us all posted and Hugs

My surgeon told me I shouldn’t worry, I won’t get Lymphedema; so when I did, I showed him and he sent me to a physical therapist who specializes in our condition. 2 years later, physical therapy, a compression vest with a sleeve, arm wraps & sleeves, it is under control.

Never let anyone do anything (take blood, blood pressure, anything) with or to your effected arm! If a tech does not listen to you, tell him to STOP & request to talk to someone in charge. I’m so sorry for your experience. Don’t be afraid to say NO and stand your ground.

Did I answer your question or just prattle on?

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