@windyshores @annkitz @auntieoakley @vivi1

I was just looking up my BC details again from 2013, looking for oncotype. Don't see one. I was just very surprised to find IVC on the pathology report and then read the same as what windyshores just said, that's it's the same as one node being positive. It also mentions it's a key step in metastasis. No one mentioned that or any concern at the time. I had IDC ER/PR+ HER2-, medium grade 7 mm tumor. 6-7 lymph nodes all negative, clear margins. I do have both the BRCA2 mutation and the CHEK2 mutation (although we didn't know about CHEK2 at the time).

My surgeon's notes to me say 1-3% chance of recurrence if I opt for the double mastectomy. Higher if lumpectomy. There was a question about hormone therapy (tamoxifen) because I'm a CYP2D6 poor metabolizer, but was told there was an alternate med. I was concerned about side effects and he told me I had about a 99.6% chance of survival with hormone therapy and 99.2% without so I shouldn't even bother. Later I saw in his portal notes that I had declined HT. No, I accepted his recommendation. I often find doctor's online notes do not accurately reflect what we each said in the visit. Radiation and chemo were not suggested since it was not in the lymph nodes.

Fast forward 7 years to 2020 and I discovered recurrent breast cancer in my chest wall an inch from the original deep tumor. It's now highly aggressive at Ki-67 50%. My original surgeon then told me if I had taken hormone therapy that would have reduced my chances of recurrence by 50%. She knew I wasn't taking it and saw me 15 times in the past 7 years. The oncologist was her partner. She seemed to be pointing the finger at me. I wasn't pointing the finger at her, but she seemed very defensive about my recurrent cancer. How frustrating.

A different surgeon removed my new 1.2 cm tumor and a small part of my pectoral muscle, but there was a positive margin. She said she didn't want to go back in for more surgery, just let radiation take care of it (we hope!). I had 37 radiation treatments, 28 regular and 9 boost, but the first 4 boosts were off target since the surgeon reopened my old incision (long story). Another error, but I discussed this with the radiation oncologist before treatment and he said he would check with my surgeon.

My current oncologist told me in the beginning he disagreed with what I was told by the 2013 oncologist. The new one thinks cells likely already got away from the recurrent chest wall tumor before surgery because it's so aggressive now. So we wonder about those and if radiation took care of the positive margin. I didn't have chemo because of my pre-x neuropathy (would be in pain forever and can't take pain meds) and he doubts it would work on my recurrent cancer anyway. So I've been on Kisqali and Letrozole for over 2 years now and so far so good. This all supports getting a second opinion on everything which I didn't do, but highly recommend. I hope to be a cautionary tale for others. Thanks for listening.

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