What should I expect after a complete removal of lymph nodes under-arm?

washoegal

Had Melanoma removed in January, had Sentinel Node Biopsy in Feb, that was positive. In March had the rest of my lymph nodes removed. I have chosen not to have any further drugs as I didn't have much cancer in my sentinel lymph nodes and none anywhere else but here's the thing......

I am the incredible lumpy woman. I had a drain tube in for 25 days and the surgeon finally pulled it out because he was afraid of infection. I had one lump the size of a half of a small grapefruit, it finally burst open. It has been 2 1/2 months since my last surgery and I just wondering how long I can expect lumps and bumps to go on. The doctors just say, for quite some time. Can real people give me some real ideas.

Dobermom

suggestion
I had all the lymph nodes taken out from under my arm also, but my experience has been quite different. My surgeon removed the tube after 7 days - although with the additional drainage after she removed it, I really wished she'd left it in longer! I drained for probably another week after she removed it before the drainage hole sealed itself up enough to stop the drainage (then I wished it hadn't). Then I had a "lump" form that took a several months to go away. Fortunately, I never had one burst open, though I've heard of it happening to people.

Anyway, I'm 9 months post-op, and it was only in the last month or so that I really started feeling "normal", with all the extra "lumps and bumps" completely gone. There's still some lingering numbness, but that's never going to go away.

One thing that I really think helped me is making sure I used the arm. Using it seemed to keep the fluid from building up and helped get rid of the fluid that was there. Really, once the incision starts healing, you can start using the arm, you can't hurt it. I learned to reach for things, and if I felt the stretch, relax into it and stretch a little more. By the time I finally got in to see the physical therapist 3 weeks post-op, there really wasn't much she needed to do for me. I needed a little work reaching past vertical over my head, and that was it. In fact, I only got the one visit with her, because she didn't need to see me again. She was very happy with my progress without her, and it turned into more of a lesson on lyphedema (what is it, recognizing it, what to do if I get it) than a physical therapy session.

I can offer you a suggestion for where you can get additional, really good, information. Try cross-posting under the breast cancer board. There are a lot more people over there, they seem to be an acive bunch, and many of them have had their lymph nodes removed as part of their breast cancer surgery. Any time I've posted over there, I've gotten really good answers. They're a very supportive group of women. You may be able to get some additional help there.

washoegal

Dobermom said:

suggestion
I had all the lymph nodes taken out from under my arm also, but my experience has been quite different. My surgeon removed the tube after 7 days - although with the additional drainage after she removed it, I really wished she'd left it in longer! I drained for probably another week after she removed it before the drainage hole sealed itself up enough to stop the drainage (then I wished it hadn't). Then I had a "lump" form that took a several months to go away. Fortunately, I never had one burst open, though I've heard of it happening to people.

Anyway, I'm 9 months post-op, and it was only in the last month or so that I really started feeling "normal", with all the extra "lumps and bumps" completely gone. There's still some lingering numbness, but that's never going to go away.

One thing that I really think helped me is making sure I used the arm. Using it seemed to keep the fluid from building up and helped get rid of the fluid that was there. Really, once the incision starts healing, you can start using the arm, you can't hurt it. I learned to reach for things, and if I felt the stretch, relax into it and stretch a little more. By the time I finally got in to see the physical therapist 3 weeks post-op, there really wasn't much she needed to do for me. I needed a little work reaching past vertical over my head, and that was it. In fact, I only got the one visit with her, because she didn't need to see me again. She was very happy with my progress without her, and it turned into more of a lesson on lyphedema (what is it, recognizing it, what to do if I get it) than a physical therapy session.

I can offer you a suggestion for where you can get additional, really good, information. Try cross-posting under the breast cancer board. There are a lot more people over there, they seem to be an acive bunch, and many of them have had their lymph nodes removed as part of their breast cancer surgery. Any time I've posted over there, I've gotten really good answers. They're a very supportive group of women. You may be able to get some additional help there.

Lymphedoma?
Thanks dobermon. It's really nice to hear that there is a chance that the lumps and bumps may eventually go away. I was just beginning to resign myself to the fact this might be permanent. I would really like to hear similar stories. It just makes you feel like your not such a strange case.