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May 31, 2020 09:56AM
When I wrote this, both my oncologist and the surgeon I saw initially were both saying I needed a mastectomy without giving me details. I was so frustrated with the surgeon when I saw him 2 weeks ago and how little information he gave me (He only spent 5 minutes in the exam room!) that I decided I would not use him. Last week I had a video visit with the breast oncology surgeon that my oncologist works with most closely. I know that seems confusing but I started out with a different oncologist in a different medical center so initially saw a surgeon there. I chose a new oncologist in a location 10 miles away in the same clinic network. When I did that I figured I’d keep the surgeon because I liked him initially. After that five minute visit I decided he wasn’t working, and my oncologist got me a video appointment with the surgeon in her clinic.
that new surgeon spent an hour with us last week explaining so much. I’m now sort of pissed off that both my oncologist and my initial surgeon were so stingy with their information. First of all, I didn’t understand that the cancer in my breast, if it comes back, won’t kill me. It will require more surgery, might require more chemo or more radiation, but cancer in my breast won’t kill me so both of them being adamant that I get a mastectomy without explaining why we’re not being helpful. She also explained that if I have had a complete response like the MRI shows that she doesn’t need to take the full amount of tissue where the tumor was +2 cm margin. She said it’s enough to take 50 to 75% of the tissue where the original tumor was and if it is 100% free of cancer then she could assume that with a 92-96% accuracy that all of the cancer from that tumor is dead.
And the final shock is that the initial surgeon when he requested a lymph node biopsy, requested the biopsy of the lymph node in the ancillary tail of my breast and did not request a biopsy of any of the lymph nodes in my armpit. So we have no idea if the lymph nodes in my armpit are involved. Given that that’s the road to the cancer that would kill me, I’m pretty pissed off about that. So now the new surgeon is strategizing on whether she has enough information to do a sentinel lymph node biopsy given that she doesn’t know if I started with cancer in the lymph nodes under my arm. But she has a plan. I’m having one more MRI, she’s using the radiologist that she trusts the most, and the two of them are going to work together to try to figure out what’s going on in the lymph nodes in my armpit.
The plus side is that I have complete faith in this new surgeon. The downside is that the prior surgeon made her work harder by not getting enough information through biopsies and MRIs at the beginning of this journey. The other plus side is she made me much more comfortable considering a lumpetomy. We’re still gathering more information, I have a second opinion scheduled for this week, I have that follow up MRI scheduled, but I know if I choose a mastectomy I will choose it based on really good information.
TCHP Feb 14-May 29, 2020, then mastectomy, radiation and 9 months of Kadcyla
1/16/2020, DCIS/IDC, Left, 6cm+, Stage IIB, Grade 2, ER-/PR-, HER2+ (IHC)
2/13/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
2/13/2020 Herceptin (trastuzumab)
2/14/2020 Perjeta (pertuzumab)