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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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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.
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.
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.
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.
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.
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
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?
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.
@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?
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.
Hello @almostoutofthewoods and welcome to Mayo Clinic Connect. I can tell this is very bothersome to you, as I can understand.
@kk57 has shared something she is doing that seems to be helping.
I did find this information which may be helpful to see if there are things in your day-to-day that you can add or modify to support reducing bloating.
– Eighteen ways to reduce bloating:
Are these options things you've already tried or are doing?
Thanks for the info, but it's definitely not a regular "bloating" or digestion problem. It's not caused by gas, which most of the suggestions are referring to. I think it's a build up of fluid, like a lymphedema problem. I've tried every logical thing I can think of and nothing helps. It always looks the same, no matter what I do. It's very common, especially with those who have had a double mastectomy. I know they cut all of the muscles and nerves and they never recover completely. Thanks again for trying to help!
I do find that some of those things help, just to make sure that gas doesn’t make a bad problem worse. Lymphadema is a very distressing problem. I do not have it bad like some do. But I am pretty careful about gas as it certainly can add pain to the equation.
Yes, on a rare occasion I have gas, but that isn't the problem, since it always stays the same even when I have gas and I take care of that problem. I am also on the Wheat Belly diet, which is similar to Keto–no wheat or grains, no sugar, good fats and vegetables, etc.
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