← 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 28 2:39pm | Replies (39)

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@cindylb

@sandyjr and others in this thread….. I had a bi lateral mastectomy five years ago and only one lymph node removed on my left and two on my right (where the invasive cancer was). However, the surgeon got a little ambitious and created a lot of damage on my left side to remove the node. I was very concerned about lymphedema because I was trying to resolve my risks. I was only Stage 1 and the doctors were fairly certain I didn't have spread to my lymph nodes. I felt lucky about their cancer assessment, but I couldn't get the information or education for lymphedema I requested. The doctors kept telling me I wouldn't get lymphdema with just one node removed. They were wrong (and @trixie1313 ) I too have Kaiser and I wish my care had been as complete as yours….sigh.
Very long story short – I developed lymphedema out of the gate following surgery in my left arm. I had to fight with the doctors to get care and ultimately had to take it upon myself to get PT and massage therapy (which I had to pay for myself) because they kept saying I didn't have it. It was frustrating. The worst part of my story is this…………this past November I got cellulitis in my left hand and arm and went into sepsis. I was hospitalized for 6 days and have permanant damage to my left hand that will never improve. I am now on a very strict program of PT, massage, and bandaging to keep the lymphedema under control. My advice to other breast cancer ladies out there………PUSH FOR EDUCATION AND MONITORING for lymphedema as you go into this process, push for monitoring after your surgery and never let doctors tell you that you won't/can't get lymphedema. I was vigilant but in the end I had no idea how bad my lymphedema was or what risk I was really at for this. I am paying the price now and 'paying' includes pain, anxiety and huge bills from my hospital stay and follow ups (I'm just 62 now and so no medicare to soften the financial blow). I let the doctors convince me that I shouldn't worry about lymphedema and here I am fighting this battle while I'm also about to hear that I have hit the 5 year mark cancer free (a very good bit of news). Hugs to all. p.s. abdominal swelling….I hadn't even heard or considered that………thanks for the info.

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Replies to "@sandyjr and others in this thread..... I had a bi lateral mastectomy five years ago and..."

@sandyjr
I'm so sorry you went through that at Kaiser. On a urological surgery that I had to have performed, I opted to go to a different Kaiser facility after looking at all the "my doctor" pages of the different surgeons. I met with that surgeon and felt he had more expertise and was willing to listen and include me. As for my breast surgeries, I also chose to go to a different facility in the Bay Area. Had I had the surgery at my home facility, they probably would have removed a large amount of nodes. Also, when I went to the other surgical oncologist, she agreed that I could have a breast MRI when that is not the standard of care and that's when we found the second tumor (neuroendocrine cancer which is very aggressive). Always listen to your gut and don't feel embarrassed to change doctors/surgeons.

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