I’ve had a bilateral mastectomy and it looks like I have a basketball

That sounds concerning. I had a bilateral mastectomy with 7 lymph nodes removed in 2013 and had issues in my arms and chest, but not anything in my stomach. What are the doctors saying? Is it a bad case of lymphedema? If so, have you gone to physical therapy for lymphedema massage therapy? The therapists work the fluid through the lymphatic system. Also, sometimes the physical therapists can shed much more light on what is happening to me physically than the doctor can. They see it all hands on every day. Best of luck to you.

I had the same procedure and had mild lymphedema in my left arm, where nodes were just 3 standard nodes were removed for testing. My stomach was also very large compared to pre surgery. My massage therapist said that there are lymph nodes in many areas of your body, including your stomach. She performed massage on my arm and stomach and both were much improved. She can show you how to continue self massage. I had soreness for quite sometime. Best of luck as you heal.

Thank you for your suggestion. I’m going to my oncologist soon and hopefully she will refer me. Have you ever worn some sort of compression for your stomach?

I totally agree that therapists have been much more helpful than doctors about lymphedema ESPECIALLY on the torso. A year ago I had what looked like a bike tire emerge horizontally underneath my mastectomy scar on the side where the lymph nodes were removed (only four were taken, but I had been on eight separate air flights in the week before the sudden swelling. I don't care what the experts say about the connection being debunked; if the fluid in my inner ear reacts to the change in pressure during an airplane's ascent and descent, I am sure that fluids in my other internal systems are capable of reacting as well!!) Doctors....argh....it's like they just don't really know how to respond, even the plastic surgeon specialist in lymphedema I saw wanted to check and test ONLY my arms...??? The therapist was immensely much more helpful. And yes, in answer to your question about compression, I used an abdominal binder from Walgreens when I was faced with that grotesque and frankly scary swelling. I was away from home--traveling, duh!--and it's all my daughter and I could think to do. That did bring the swelling down until I saw the therapist. I'm using other compression now--the swelling, at this point way more mild and diffuse, has moved higher (above the scar) and my effort is to keep on top of it so it never comes back like that first shock!! The therapists have strategies to work you through reining it in and then trying to maintain life without an episode. Yeah for a good therapist!!!!

In any case, good luck dealing with that basketball, and if you get frustrated, know that you are not alone!! I'd be glad to resource with you--keep us posted!!!!

Thanks for understanding. Welcome your suggestions. I’m going to try a therapist to at least get this basketball down to a baseball

By the way, to my surprise, I found lymphedema massage to be very gentle and relaxing. Some physical therapists are better than others so don't be afraid to request a certain one when you find someone you really like. Ask the scheduler for their favorite PT for lymphedema.

@nanahatton65 So glad you decided to reach out to our community. I had a bilateral mastectomy in Sept 2019 with lobular cancer in my right breast, and lobular and ductal in my left. 20 lymph nodes taken out of one side and 15 out of the other. Subsequently determine to be stage 4 because my breast cancer in 2019 had spread to my skin. Various meds held it in check until May/June 2021 when it came back to my peritoneal lining, omentum and stomach. Chemo etc has held it in check and doing well right now. Also I did reconstruction for 6 mos starting in December 2020 drains etc all over again. So I am giving this background to explain that I am familiar with lymphedema. Swimming, compression sleeves, lots of yoga and pilates, and regular massages (sometimes lymphatic) and drinking lots of water have helped over my several year journey. However I am concerned about where your swelling is occurring and I personally do not see the connection. I did develop Ascites which swelled my lower belly and made me look pregnant. Ascites is fluid build up. It was painful as it pushed under my ribs, moved organs and hit nerves. I would push for a sonogram of your abdominal area. It would be a better identifier of what is making your belly swell ie fluid. They can then test the fluid. In my case, we needed to do some draining. I am hopeful that my reaction to your situation is extreme and that you are just having a less normal reaction since your body has lymph nodes everywhere. I just don't want you to let the docs off easy - I am a big believer in trust but verify/doublecheck everything. Good luck!!!

So glad to hear you’re doing good. I see my oncologist next month and explain my issues. My stomach is also pushing up under my ribs as well. Put a compression on and still allot of discomfort. Thanks for responding. Also I’m not over weight but look like I’m about ready to deliver any day, ugh 😩

Gosh I was relieved to not be pregnant again ….sorta!! If I were in your shoes, I would call and either try to be seen earlier or speak to a nurse. Discomfort/pain is not so normal - especially b/c it is not in chest area and it is 3 months later. Tests could be run, scans etc could be done ahead of your meeting in a month so that your visit is more productive. Don’t be concerned about being a squeaky wheel!