← Return to abdominal swelling/bloating after a double mastectomy

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shahzadee6 (@shahzadee6)

abdominal swelling/bloating after a double mastectomy

Breast Cancer | Last Active: Nov 11 1:08pm | Replies (38)

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@sandyjr

I have had bilateral breast cancer with lymph nodes removed and I seem to have to fight to get proper treatment. I was discussing my request for lymphedema consideration when I went for blood work etc. and the surgeon blew me off. I asked her what if I had no arms and she said I was carrying things too far. This was at a cancer center that was connected to a hospital that had a trauma center! Goodbye surgeon. Another time I got a call from a nurse in my doctor’s office about adding “patient requests blood be drawn from the foot because of breast cancer.” The nurse made a comment about good luck with that (my words). If people got proper training, they would know about lymphedema and be able to give proper treatment. As a matter of fact, I have found two phlebotomists that will honor this. I do not get my blood drawn at the cancer center nor the hospital associated with it. Medical procedures always scare me now. The nurses/techs give you bs when you ask for proper treatment….you can’t get lymphedema if you only have 1 node removed…you won’t get if after 10 years…you won’t get it if they take blood from your hand…they can’t take blood pressure in your leg…it goes on and on. I am getting bilateral mastectomy/breast reconstruction (after finding out I have a genetic mutation) next month and am scared to death about my hospital experience. I guard my hands and arms like you wouldn’t believe. For me, the BC nightmare never ends. Thanks for you input.

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Replies to "I have had bilateral breast cancer with lymph nodes removed and I seem to have to..."

I am obsessive about no BP, blood draws etc. from my affected arm. I changed PCP docs once after her assistant ARGUED with me about BP cuffing that arm! (If it was a life-or-death matter and that was the only place they could draw blood or something, that would be different…). I wear a medical alert bracelet on that arm. I have had three surgeries, including total hysterectomy, for pelvic floor prolapse (unrelated to my BC, but it has been its own nightmare) and each time have worn a fluorescent pink “lymphedema alert— no needles, BP, etc” sleeve to surgery and during my hospital stay, with my doctors’ knowledge and consent. So far I’ve had no problems during surgeries.
https://www.tlcdirect.org/Lymphedema-Alert-Sleeve.html

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