Oct 18, 2021 07:41AM NOLAstrong wrote:
I have actually never posted before (I'm more of a lurker), but when I saw your situation, I felt it was important to share. I was in a similar situation where they found the micro met after the initial surgery. The tumor board was split about what to do. 1/3 said do nothing, 1/3 said axillary node dissection, 1/3 said radiation, which was not helpful in making my decision. Shortly after this, my mammaprint came back saying I was high risk for distant recurrence, so then chemo was warranted. Upon meeting with my oncologist, she told me that knowing what was going on with my remaining lymph nodes would be helpful for her to determine the best course of treatment and in how aggressive to be with the chemo. I personally had concerns about AC-T due to the risk of heart problems. I was 44 at the time and very active and was looking long term. She also told me I was in the lower risk category for lymphedema. So I chose to do a node dissection.
The remaining 7 nodes were negative, so I ended up doing 4 cycles of TC (instead of 6 cycles or AC-T). One thing that I wasn't prepared for was the numb feeling on the back of my arm. Apparently when the doctor goes in for the second surgery, they evaluate the nerve and mine was looking 'chewed up' from the first surgery. My surgeon severed it because of this. She said she did this because with that level of damage and the additional damage that would occur in the surgery, it would lead to a burning sensation. I'm used to it now, but wasn't informed that was a risk ahead of time, so wanted you to know about this.
About halfway through my chemo I started experiencing swelling throughout my body (face looked puffy, my ankles feet reminded me of being about 5 months pregnant). Fast forward to the weeks following my final chemo treatment, I was still experiencing fluid retention in my legs/feet. My wrist in my node dissection arm started to hurt. I figured I had just twisted it funny lifting something. I now know that was my first sign that lymphedema was starting. Then one afternoon, after my wrist hurting for a few weeks, I was bundled up and fishing on the boat and when we came back my entire arm was visibly swollen and that is when I knew and a few weeks after that I was able to connect the dots on the wrist pain.
So far, I am able to manage it with compression, almost daily use of a flex-touch machine or self massage if I am away from the machine, exercise, and maintaining a healthy weight. I try not to second guess my decisions, because who knows, if I had done the AC-T maybe I would have been one of the folks to develop heart issues or if I had done that longer chemo cycle, I would have been immunocompromised longer and ended up with a bad infection. I also wonder if I would have ended up with lymphedema with just the sentinel node removed. With the amount of fluid retention I experienced from chemo, I think that is very possible it would have triggered in that situation too. And I try to focus on the positive, which is that I am still here and so far able to manage it.
I know that is probably not very helpful. I know the most frustrating thing for me, was trying to make the decision. I was very surprised that the doctors didn't have a strong recommendation and weren't in agreement about what to do with the micromet.