Positive Lymp node - Follow up surgery?

Hi!

Chemo and radiation typically produce temporary side effects but lymphedema can be chronic. Or, so I've been told. I had all of my Levels 1 and 2 lymph nodes (20 total) removed and have yet to develop lymphedema. Plus, there are some women who do develop permanent conditions, thanks to chemo and radiation. What to do?

Honestly, chemo and radiation could clear out the remaining cancer in your nodes (if there is any). I had neoadjuvant chemo, and by the end of my regimen, all the active cancer in my breast and compromised node were gone. I ended up having six weeks of radiation anyways, and have been NED since (clear PET scan & MRI, and three clear mammograms). Still taking my Aromasin.

Some women believe that they were susceptible to lymphadema before they got it. For example, they'd always had problems with swelling even before their surgery. If you fall into that category, you have a solid reason for refusing ALND.

It's really hard to say who will/won't bear radiation well. Women with fair skin do not necessarily do worse than those of us who are darker. But, three weeks would be gentler than five weeks.

If it were up to me, I'd do Option B. Further surgery will delay treatment, and -- after reading these boards -- lymphedema seems like a very debilitating condition for many ladies. Best wishes, whatever you decide.

Ann, just so you know - many breast surgeons are moving away/have moved away from doing ALND after finding 1-2 positive nodes. Many studies have shown that there is no advantage and, very frequently, the remaining nodes turn up no further positives.

It's up to you and it sounds as though you've made your decision so I'm just throwing this out there to round out the picture.

As someone who did get ALND but has not developed lymphedema, I wish you similar results. You could ask a certified lymphedema therapist to measure your right arm before surgery. Then you'd have a baseline measurement to compare your post-surgical arm to. My RO's nurse did some cursory measurements before surgery, which I guess was better than nothing. I can't think of anything I've done that has made me less prone to lymphedema. Must be just dumb luck!

From my perspective, my only problem with the ALND surgery is that I ended up with a drain. But, seeing as you already had a mastectomy, you are probably a drain expert by now. Best wishes!

I had my drain for a long time, too (two weeks?). I later found out that I could have gotten rid of my drain quicker if I hadn't been so active after surgery (went back to work the next day). So, if you can remain somewhat sedentary, that might help.

Good luck, Ann! Hope your surgery and recovery go smoothly!