Second time around questions
After 7 years past double mastectomy without issue (no other treatment at that time), I was recently diagnosed with a new breast cancer occurrence, a 1-2 cm lump in my breast skin. After two surgeries and three lymph nodes removed, all testing positive for same breast cancer (ER+, PR+, HER2-), I'm told I will have to do a full treatment of 20 weeks of chemo, more surgery to remove level 1 & 2 nodes, and then 5 weeks of radiation. Does this sound right? Wondering if I need a second opinion.
I'm going to have axillary lymphovenous bypass (LVB) during the surgery to help prevent lymphedena. I hope to do the surgery first, if they can do it soon. Has anyone else had this type of surgery? If so, has it prevented lymphedema?
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Bumping for LVB experiences. I didn't have it.
It doesn't hurt to get another opinion even though your 3 nodes had tested positive the first time around. Were you given a baseline MRI ?
Best wishes going forward.
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No baseline MRI. No scans at all after double mastectomy until the new lump was found. I had a pet scan after initial lumpectomy came back positive w/o a clean margin. Luckily, nothing lit up except the area where the lump was.
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Bit of a different profile, but I am nine years out from my recurrence and I am just here to tell you hang in there and I am cheering you on. I had had a double mastectomy too, and spent far too much time calculating my risks. I encourage you to go with the treatment that gives you the best chance at the best outcome, but not to spend your time on "what ifs."
Having said that: absolutely, get the second opinion, because being comfortable with your treatment plan and your doctor means everything for your peace of mind. The second opinion may be different than the first (mine was), but air them thoroughly with both doctors and you will know what feels right to you. If they are the same, you have a plan.
All the best to you. You've got this.
Yuuki
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As uuki said above, definitely get a second opinion.
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Thanks all. Second opinion scheduled for next Tuesday. Surgery scheduled for next Friday.
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Good to hear you will be gettting a second opinion!
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Just an update, got a second opinion from a new surgeon and oncologist today and it’s completely different. Apparently there’s a newer PET scan that works better for estrogen positive cancers. FES PET-CT (Fluoroestradiol Positron Emission Tomography-Computed Tomography) is a nuclear medicine imaging technique used to detect and assess estrogen receptor (ER)-positive breast cancer.
Apparently my first oncologist didn’t think this was necessary. I’ve decided to take a breath from this train ride and have this test. The outcome could change the treatment dramatically. If more cancer is found in other areas, there’s no reason for the additional lymph node removal. If no more cancer is found, there are options other than chemo. My lymph nodes that were positive never showed up on the original PET scan. So I never felt confident in the results. I will be switching to this new oncologist for any future treatments.
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Results from PET FES shows cancer in all three levels of Axillary lymph nodes. So depressing. Everything else looks clean. I guess I should be thankful for that.
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