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Topic: Big waist months after DIEP--will it ever go away?

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

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Posted on: Mar 8, 2015 06:13PM

GardenGirl808 wrote:

I realize this is a minor issue in the grand scheme of things, but I'd really love to know if there are other women out there who have experienced the same thing. I had a double mastectomy last July with immediate reconstruction via DIEP flap. One of my veins collapsed during surgery, so they took a vein from my ankle and fixed it while I was still under. This caused my surgery to stretch out to 13 and a half hours. My PS said he pumped me full of 12 liters of extra fluid to keep the veins from collapsing in my breast--which I think is usually done after DIEP?--and has told me this fluid retention will gradually get better and then be removed with my follow-up surgery to make nipples and do liposuction on my dog ears (and then use that fat to even out the lumps in my breasts). That surgery is in a little over a week, but I'm anxious to know if anyone else has had lots of swelling in their abdomen almost 9 months post-surgery. I know I"ll have some swelling from the liposuction, and it would make my emotional recovery from this next surgery so much easier if I knew I was truly going to be much smaller in my abdomen after this. It is flatter than it was before my surgery, but my waist is actually bigger! Also, I have lots more I could say about DIEP surgery and what I wish I had done differently if anyone is about to do the same.

Dx 5/2014, IDC, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 7/14/2014 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/19/2015 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Mar 8, 2015 11:58PM cider8 wrote:

I did 3 things:

Physical therapy to break down scar tissue (called soft tissue mobilization, which is more aggressive than Myofacial release) and to 'retrain' my abdominal muscles (the numbness of my belly caused me to cheat movement; special exercises retrained me to use the smaller inner ab muscles and improved my core stability).

Lymphedema therapy to help drain that post surgical edema and to encourage a new pattern of lymph flow.

Going gluten free; I found I had a lot belly bloat from eating wheat.

~Paula~ [R] Pure Mucinous, DCIS, & IDC. BMX w/DIEP in NOLA 5/11; 12/11; 9/12. DD AC/T end 9/11. Tamox. 2mm IDC found 9/12 = 33 rads end 01/13, Oncotype 34. [L] IBC = TCx6 end 7/13, MX (remove flap), 44 rads (2x/day) end 10/13. Zoladex & Arimidex. Dx 2/25/2011, IDC, 1cm, Stage IIA, Grade 2, 1/21 nodes, ER+/PR-, HER2- Dx 4/5/2013, IBC, Stage IIIB, ER+/PR+, HER2- Dx 8/22/2013, IBC, Stage IIIC, Grade 3, 10/28 nodes, ER+/PR+, HER2-
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Mar 9, 2015 03:13PM GardenGirl808 wrote:

Thanks so much for your response cider8--I really appreciate it! Did you have more work done after the initial DIEP surgery? I'm wondering if I should expect a lot of swelling in my abdomen from the liposuction (for fat grafting to my breasts) I'm having next week, and if so, how long that might last and whether I will truly be smaller after all of this.

Dx 5/2014, IDC, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 7/14/2014 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 3/19/2015 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Mar 31, 2015 10:43AM shelly56 wrote:

GardenGirl, I also had DIEP but only after TE removed and after 2 years from DX. Though I didn't notice any swelling I did notice if I moved a certain way or stretched the abs, the scar tissue would knot up something awful, just like a really bad cramp. In a few minutes it would go away -- do you have any of that? I didn't want nipple recon --I just saw no point and you have to be comfortable with any decision. I had 2 revisions after the DIEP. Your surgery sounds familiar - my PS had to keep pumping fluids into my the veins in the flap and when he would try to "find" them, they were so tiny and would play hide and seek, thus a 11 or 12 hour surgery. I told him if it meant he would have to take a vein from my leg at any point, that he should instead go looking elsewhere. Luckily, he found a good vein under my left arm. We are lucky after all this -- sometimes the surgery is a failure and you have to figure out another option. Where did your surgery take place? I was at Mayo Clinic in MN.

The revisions in my opinion were not entirely successful and I am still a whole cup size bigger on one side. I was never uneven before breast cancer. I think that was the hardest thing to swallow. take care

"Courage is resistance to fear, mastery of fear - not absence of fear." Dx 1/26/2009, IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/15 nodes, ER+/PR+, HER2-
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Jun 28, 2015 09:08AM Ria56 wrote:

Thanks for posting this.  I always had a big chest and small waist.  I had the bilateral mastectomy and DIEP done in April.  Now my chest is much smaller and my waist is much bigger.  I am half-way through OT and have great range of motion, but am just now beginning PT to work on my core. 

 

Cider 8: Where did you go to get therapy?  What questions should I ask.  Do you know of any reading material?

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Jun 28, 2015 10:16AM LiLi-RI wrote:

I had my surgery one year ago on June 17, 2014, and my upper abdomen is still huge. By the end of the day, I look 6 or 7 months pregnant. At my last appointment with PS in December, PS stated he had no idea what was causing this issue. I don't know where to turn at this point. I would love any help or advice. Lis

Dx 5/31/2013, IDC, <1cm, Grade 2, ER+/PR+, HER2- Surgery 6/13/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 7/9/2013 Lumpectomy: Right Radiation Therapy 8/29/2013 Whole-breast: Breast Dx 4/30/2014, ILC, ER+/PR+, HER2- Surgery 6/17/2014 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 8/24/2014 Reconstruction (right) Surgery 10/2/2017 Reconstruction (left): Body lift perforator flap , Fat grafting; Reconstruction (right): Body lift perforator flap , Fat grafting
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Nov 9, 2015 01:25PM NJ-Jen wrote:

I have to go into the hospital often for another condition and they pump me up with tons of fluids. I know this sounds silly, but you can get rid of fluids by bathing in Epsom salts (it helps pull excess fluids) and ironically, drink more. Your body is retaining when it feels it is under stress to keep them and when you give more, the body goes ah, ok, I can dump now.

I don't have adrenals and every time I go in I gain anywhere from 6-17lbs in fluids... It is horrible and takes a bit to drop it off.

Right IDC, under 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Left IDC, under 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2- (FISH)

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