1. < Breast Cancer

Abdominal swelling/bloating after a double mastectomy

Posted by shahzadee6 @shahzadee6, Apr 17, 2019

I have not had reconstruction yet and it has been a year. I am not fat just looks like a have a basketball under my shirt.

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trixie1313 | @trixie1313 | Jun 28, 2020
In reply to @cindylb "@sandyjr and others in this thread..... I had a bi lateral mastectomy five years ago and..." + (show)
@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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@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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chamisa | @chamisa | Jun 28, 2020
In reply to @cindylb "@chamisa See my post below. Keep a close, very close eye on any cuts (even the..." + (show)
@cindylb

@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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Thanks for the alert. I stay vigilant and will do my best to continue so. I am very aware of how my arm looks, how it feels (hard to explain to others who don’t have lymphedema but I call it “my arm bothering me”... kinda nebulous but it’s a real thing.) I stay on top of cuts, scratches, abrasions, cracks. I avoid sunburns. It’s just maddening that it was never medically discussed with me; when I asked, my surgeon said “only” about 30% of his patients develop LE. Thank goodness I was proactive about asking and helping myself. I applaud the actress Kathy Bates for trying to educate more people about it. Good luck with your situation. 👍

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chamisa | @chamisa | Jun 28, 2020
In reply to @trixie1313 "@chamisa I am so sorry you have gone through all of that without the doctors or..." + (show)
@trixie1313

@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.

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Wow. Sounds like you are lucky enough to be treated at an enlightened center. I had one instance of cording early on that my therapist helped me work on and get past. I also have been through exercise/weight training/stretching programs which do help.

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chamisa | @chamisa | Jun 28, 2020
In reply to @sandyjr "I have had bilateral breast cancer with lymph nodes removed and I seem to have to..." + (show)
@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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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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Faith &HOPE | @fderso | Jun 28, 2020

wow a very interesting story about our journey dealing with breast cancer. I only had 3 lymph nodes removed from my affected arm which is left arm. I had bilateral mastectomy as prophylactic measure to prevent recurrence to my right breast. Luckily i can take BP and draw blood from my right arm since no lymph nodes removed, I have to remind the nurses at my oncologist office even though they have my record in front of their face. We need to be ambassador of our own health and not allow them to touch the affected arm. If they have to they can take BP on the lower leg which is okay to do so as long as you don't have any problem with lower leg. Always ask for a second opinion if possible before taking a major decision such as having surgery or starting a new treatments.

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bluelovebird | @bluelovebird | Aug 12, 2021
In reply to @carr "I had surgery Feb. 27, 2019 and had abdominal swelling. The hospital and my surgeon said..." + (show)
@carr

I had surgery Feb. 27, 2019 and had abdominal swelling. The hospital and my surgeon said the swelling was not swelling, they said my stomach appeared to me to be swollen because I did not have breasts. I started physical therapy 2 weeks ago and the physical therapist could tell right away that it was fluid. She did Manual Lymphatic Drainage (MLD). So, yes, I have lymphedema and the massage moved a lot of fluid out. She had me purchase an abdominal binder which I wear only during the day. Also, some elastic type shorts that come up to belly button and that have a wide elastic band for waist. I bought them from Dick's Sporting Goods Store. I bought the 9" abdominal binder from the medical store called Aids for Recovery. I wear the abdominal binder during the day at work and the shorts if I'm relaxing around the house etc..
Be sure if you go to a physical therapist that you confirm that they have been trained in lymphatic massage. Also, try walking to help.

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I removed my 2 breast on the 13 of January and I have a large stomach they told me it will go down and it is 8 months now and it is still big

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 12, 2021
In reply to @bluelovebird "I removed my 2 breast on the 13 of January and I have a large stomach..." + (show)
@bluelovebird

I removed my 2 breast on the 13 of January and I have a large stomach they told me it will go down and it is 8 months now and it is still big

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Geez, as if the mastectomy wasn’t enough. I am sorry you are dealing with this. Have you asked your doctor about this swelling? If it is lymph fluid or maybe just fluid? Is there is a method to encourage it to decrease?

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almostoutofthewoods | @almostoutofthewoods | Oct 2, 2021

I had a double mastectomy with no reconstruction about 3.5 years ago. I was stage 1 in my left breast, but had the double as a preventative measure, since I never wanted to go through this again. I didn't have chemo or radiation and I only took anastrozole for 5.5 months, after bad side effects. I now have a very large protruding stomach that seems to get progressively worse as time goes on. I am now almost 72, retired, and I don't wear a bra with forms unless I dress up, so my body resembles a man with a big beer belly. It's NOT a good look! Although I have been told the common reply from my surgeon and family Dr. that I just didn't see it before because my breasts were there, that is total B.S. I do have mirrors in my house and my stomach never stuck out before. This is such a common problem after a mastectomy that I would think doctors would admit that it is a problem and address it. It's horrible enough going through cancer and treatment and all of the problems involved without having this disfiguring problem.

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KK57 | @kk57 | Oct 3, 2021
In reply to @almostoutofthewoods "I had a double mastectomy with no reconstruction about 3.5 years ago. I was stage 1..." + (show)
@almostoutofthewoods

I had a double mastectomy with no reconstruction about 3.5 years ago. I was stage 1 in my left breast, but had the double as a preventative measure, since I never wanted to go through this again. I didn't have chemo or radiation and I only took anastrozole for 5.5 months, after bad side effects. I now have a very large protruding stomach that seems to get progressively worse as time goes on. I am now almost 72, retired, and I don't wear a bra with forms unless I dress up, so my body resembles a man with a big beer belly. It's NOT a good look! Although I have been told the common reply from my surgeon and family Dr. that I just didn't see it before because my breasts were there, that is total B.S. I do have mirrors in my house and my stomach never stuck out before. This is such a common problem after a mastectomy that I would think doctors would admit that it is a problem and address it. It's horrible enough going through cancer and treatment and all of the problems involved without having this disfiguring problem.

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@almostoutofthewoods I just had a bilateral mastectomy in July and have a very bloated belly as well. My doctor hasn’t really addressed it either. It feels like fluid buildup to me. I have been drinking a detox tea - kind of a natural diuretic- and it has helped. I agree this should be better acknowledged and treated. I now understand why there are some older women who appear to look pregnant. They are likely breast cancer survivors. Let’s continue to pursue this with our medical teams. There must be treatment advice out there somewhere. Anyone on the forum have information on post-mastectomy belly bloating?

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d13 | @d13 | Oct 3, 2021
In reply to @kk57 "@almostoutofthewoods I just had a bilateral mastectomy in July and have a very bloated belly as..." + (show)
@kk57

@almostoutofthewoods I just had a bilateral mastectomy in July and have a very bloated belly as well. My doctor hasn’t really addressed it either. It feels like fluid buildup to me. I have been drinking a detox tea - kind of a natural diuretic- and it has helped. I agree this should be better acknowledged and treated. I now understand why there are some older women who appear to look pregnant. They are likely breast cancer survivors. Let’s continue to pursue this with our medical teams. There must be treatment advice out there somewhere. Anyone on the forum have information on post-mastectomy belly bloating?

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Hi, kk57. I had my right breast mastectomy at the end of July with expander put in at the same time. I haven't experienced any bloating. Why do some experience this. I see that you and one other have experienced bloating. Your surgeons don't have an a swer for you? Something is causing this to happen! Hope you find answers.

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