Testing, treatment, side effects, and more.
Aug 21, 2021 06:28AM
Hello all, I'm not sure if this is exactly where I should post this, but here I go. I am curious if anyone else has been in this situation before. I am stage 1B ER/PR (80%) and HER2+ (20%). I also am BRCA1+. I had two tumors, and 1 positive lymph node. I completed the TCHP prior to surgery. I recently had my double mastectomy, and the doctor removed 4 lymph nodes. The pathology report showed that I didn't have a complete pathologic response, but a very good response. One tumor completely disappeared, one tumor shrunk from 2.5cm to 8mm, then my 1st sentinal node came back positive, it shrank from 1.1 cm to 6mm, but the other 3 nodes came back negative. What is left is all slow growing. I will now have Kadcyla infustions, hormone blockers for the next ten years, and radiation for 6 weeks. I am 38 y/o btw. Since I had already had chemo, and the node shrank yes, but was still positive, the doctors are suggesting I go back in and have a complete axillary deconstruction before I start radiation. I am not sold. It seems like if there were any microscopic cells left, that is what the radiation is supposed to kill. If I choose to go back to surgery, it increases my risk of lymphodema to 20-30%. The doctors said looking at my scans, they can't see any cancer in my nodes, but this is the standard of care based on studies. The US doesn't have any studies currently looking at ER/PR HER2 patients with positive node post surgery comparing radiation only vs radiation and complete axillary removal to see if one or the other is better. Doctor said the additional drop of recurrence benefit is less than 5%. Other studies have shown that there really hasn't been a huge difference between the two. I don't know what to do, and am curious if anyone else has been in this situation before. Thanks
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Aug 21, 2021 08:41AM
Can you get a second medical opinion from another surgeon? I’m 39 and triple positive. Waiting on staging.
It’s such a difficult choice of what to do for so many things. Will they radiate the Lymph nodes if you don’t do the dissection? It’s hard to know recurrence vs quality of life. What is your gut saying?
Im thinking about all my options right now too and it’s not easy. Particularly if I should go for a mastectomy or not and if I do, should it be bilateral. I’m waiting on genetics but on my dads side there is a moderate history on my dads side indicating it might be familiar. I struggle with if I should bite the bullet even if it’s negative since it might still be hereditary even if they don’t find something.
I’m sorry you have to navigate these choices. It’s not easy. (((((HUGS)))))
7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+
8/11/2021 Lumpectomy: Left; Lymph node removal: Sentinel
9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+
9/22/2021 Herceptin (trastuzumab)
9/22/2021 Taxol (paclitaxel)