New primary (or, here we go again!)

Thanks so much for everyone's input. I forgot how busy-crazy this time can be! And now, everything's all FUBAR'd and I'm kinda ticked off.

Had surgery on Monday. The cancer itself is actually only 8 mm, so that's great, and 3 lymph nodes removed are clear. It's Grade 3, though and TN (I was prepared for that). So - good news is no ALND with mx. Bad news is, they now want to do mx first, then chemo, then reconstruction 6 months later. I don't want implants and will only consider flap like DIEP at this point. Surgeon says that's another reason to postpone recon (time to heal/watch for infection).

I can't imagine trying to take two extended periods of time off of work for recovery, plus all the crap with chemo in between. Help me understand why I can't do chemo first?

Well sh*t. Our appointment at UofM hasn't bern exactly what we'd hoped for, but this afternoon we did finally get an answer we really, really wanted. Their tumor board reviewed slides from my initial dx and new dx, and believe this is not a new primary but rather a local recurrence. My first cancer was 50% ER+ and 10% PR+. Given the heterogeneity of BC they believe some of the 50% ER- and 90% PR- cells regrew into this. They agreed that my Oncotype test demonstrated some of that heterogeneity by reporting PR- and borderline ER+.

So there's that. No new Stage, but rather Stage 1 with local recurrence.

Meow - I did 3 months of Tamoxifen, then took a one-month holiday; tried Aromasin for two months, then stopped for another month, then tried Tamoxifen again, gave up everything after two months. Eight months total. The SEs were debilitating for me. I spent a lot of time making a thoughtful decision, and even now I don't regret it. At the time my NP shared with me the school of thought that the highter the percentage of ER, the better response to the therapy, and with 50% on my pathology (and minimal ER+ on Oncotype), they still felt I needed to do hormonal therapy but were supportive of my stopping.

FarmerLucy - UofM didn't seem to have an issue with my preferred order of treatment; they mentioned very specific reasons for my decisions (so my doctor obviously wrote these things in my electronic record...probably followed by "non-compliant" somewhere) but when we discussed they never suggested otherwise. I met with my MO this morning and he said, again, he preferred me to have an mx now, followed by chemo then recon later this summer. I explain I'm trying to minimize the number of surgeries I have, as well as the amount of time off I will be taking, but I feel like it kind of falls on deaf ears. In any event, chemo next week, DEIP planned for the summer, so at least now I have a plan in place.

Quinn - My explanation about TN and the percentages from my previous cancer come directly from the conversation we had with the UofM oncologist. Their explanation is that 50% of my cells stained positive for estrogen receptors, so 50% ER+. The remaining 50% do not have estrogen receptors, so 50% ER-. Same thing with the progesterone receptors, 10% positive and 90% negative. She explained that because of the heterogeneity of breast cancer, they know that not every cell in a cancerous tumor is the same. So yes, part of my previous cancer was triple negative. But - and this is the important caveat the doctor stressed - the ER+ cells allowed my team to offer targeted hormone therapy, so (and I've seen this on BCO before), any ER+ means the cancer is considered ER+, period.

I want to be clear - there was no misdiagnosis of my original cancer. The few TN cells that survived my original chemo and radiation treatment regrew in the same area, and created the area I have now (or had, until surgery last week).

Since I can't do AC-T I'll try TC. I hadn't thought to ask about carboplatin, I may do that. They seem happy with small size and no positive nodes, even with a recurrence and TN. And no - Oncotype is only for ER+.

UofM completed their own pathology report based on the 23 slides they received from my pathologist, and agree it's TN based on staining - no cells stain positive for Estrogen or Progesterone receptors. There is also a minimal margin that my surgeon called "dirty" because it's less than 0.5mm, they confirmed that. There was also an area of high-grade DCIS with comedonecrosis which no one had told me about (no size on either path report, though).

I've been trying to do some research on discordant hormone receptors in local recurrence, and hope to have more information to share later.

I had a hard day yesterday, over-analyzing the whole "recurrence" label. In the end, it doesn't really matter except that it feels scarier, knowing these fews cells survived harsh treatment and grew back.

ItalyChick - thanks for sharing that information. It makes me wonder, though - if there are those rogue cells left behind that can spontaneously (or otherwise) start to regrow, why we aren't more proactive with mastectomy in the first place - that is, removing the environment in which the cancer wants to grow? Especially if they are resistant to the treatment options we currently have available. In my case they survived AC-T, as well as WBR and targeted boosts.

Then again, I'm still waiting for the results of the genetic testing, which may throw in another twist. If there's a discoverable, heritable genetic component, none of that may matter anyway.

I think my new mantra is quickly becoming, It's a crapshoot.