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shahzadee6 (@shahzadee6)

abdominal swelling/bloating after a double mastectomy

Breast Cancer | Last Active: 5 days ago | Replies (39)

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@chamisa

I have mild lymphedema in one arm after a bilateral mastectomy where seventeen lymph nodes were removed. I may have some in my abdominal area as well but I have been focused on my arm. I never was informed about the possibility of lymphedema at all by any medical person, but an acquaintance had it so at least I was aware. I proactively insisted on a referral to a lymphedema therapist (who incidentally was “awful”… I have since found a kind, caring, and helpful therapist. It’s like doctors— sometimes you have to search for one who is a good fit for your personality) because I was going to be flying on a vacation and I knew sometimes flying can be a trigger. My doctor was reluctant to admit lymphedema was a potential problem but finally relented and made the referral. My lymphedema is “mild” because I avoid triggers, practice MLD, have a Flexitouch pump system to use as needed, know what physical exercises to do to help, know how to short-stretch bandage if necessary, and finally wear a compression sleeve during exercise or exertion. (I don’t like regular lymphedema compression sleeves but I do like Solidea brand items, which my therapist recommended.) It’s frustrating that doctors don’t take lymphedema more seriously, but I guess they’re just focused on ridding us of the cancer.

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Replies to "I have mild lymphedema in one arm after a bilateral mastectomy where seventeen lymph nodes were..."

@chamisa
I am so sorry you have gone through all of that without the doctors or nurses explaining the future possibilities. My health carrier is Kaiser Permanente and prior to any surgeries, they have patients attend classes guided by physical therapists. Another health carrier, Sutter, also offers classes and I found their lymphedema class was even more educational. Kaiser also offers their patients an "after breast surgery" training class by the physical therapy department whereupon one does a series of stretching, core, weight training (stretch bands and free weights), and then finishing with stretching exercises. Once the month-long class is completed, as patients we do those twice weekly at home and for me it takes about 30 minutes. I have not had lymphedema per se, but twice now have experienced axillary web syndrome or cording and cannot express to you how important the exercises are. I am so thankful you found a therapist who has helped you. Follow your instincts and if your doctor isn't responsive enough, keep looking for one who will attend to your health needs. All the best to you.

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.

@chamisa See my post below. Keep a close, very close eye on any cuts (even the smallest). Keep at your PT and massage and other care. I 'thought' I was doing it right but I let one cut go and ended up in very bad shape with cellulitis. I too had 'mild' lymphedema….now I have hand and arm damage and it's not so mild. Stay vigilant. Hugs…..

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