Surgical Path so confused and sad

KMom57 · May 2020

Hi. I posted here once after my ILC diagnosis in Oct. I just had mastectomy after 6 or so months on Neoadj Letrozole. I'm so confused and scared.

Long story short, after diagnosis, I got opinions locally, and at MDA and at another large NCI cancer center. Nobody agreed on how to treat it neoadjuvantly. I finally went with NET. Though through the process there were also disagreements on if it was working. The first biopsy after one month the ki-67 dropped from 23 to less than 1, and clinically it was much better. So all looked good. Subsequent imaging, there were disagreements on was it growing or not and whether surgery needed to proceed ASAP. Covid cancelled the first attempt at surgery. I went ahead closer to home, just had surgery and the pathology doesn't look good. I'm so confused. The tumor itself, which on ultrasound and mri looked like multiple tumors which one cancer center said was nearly 8 cm of disease in total, ended up on final path being only one tumor 2.4 cm. That main tumor on last mri was measuring 4.9 cm.So that is good, right? But there were 8/11 nodes, LVI and Extranodal. I'm so scared. And I don't understand how the tumor could come back smaller than expected but the nodes so much worse. I'm a single mom of a young girl. I'm terrified.

ShetlandPony · May 2020

KMom, I’m sorry this is happening to you and for the terror. Your post gives me the feeling that things are confusing and unclear, that your care and advice are scattered. Have you chosen the main place for your care? Who can you meet with to ask your questions? Since your case is complicated, I hope you can go to your nearest NCI center (or better, NCCN). If not, have a consistent NCI/NCCN second opinion doc even while you implement the treatment plan locally. What is your treatment plan going forward? Are you confident with it and with the doctors? Getting some focus, getting your questions answered, and trusting your care team will do a lot to move you out of terror and into taking care of business and living your life.

KMom57 · May 2020

Thanks for responding. I’m at an NCCN center for oncology, with a wonderful dr who I trust and who is always willing to answer questions, but the treatment plan is carried out locally. I couldn’t do the surgery there because of finances and covid, but I do have a really good, very blunt (which I appreciate) experienced surgeon here who I trust. The NCCN is going to redo the path as a second opinion, and will be looking at some specific aspects of the tumor and nodes which I’m told will better inform them as to if my cancer is sufficiently responsive to the letrozole, and what needs to happen moving forward. I’m just so scared. I never anticipated so many nodes. It looked like the treatment was working well. What scares me the most is that I’m told (by docs) that chemo won’t work well, my oncotype and mamma print were low risk, no apparent benefit, and it’s highly ER/PR pos. And lobular.So what then? If neither NET nor chemo responsive?

ShetlandPony · May 2020

What is NET, Neoadjuvant endocrine therapy? It sounds as if you have a good team in place and that they are still investigating in order to make treatment plan. This waiting time is difficult. Most people say they feel better once the plan is in place, so hold on while they figure this out. Early stage ILC is typically very hormone-driven. Typically the most aggressive (non-chemo) treatment would be ovarian suppression and an aromatase inhibitor. But there may be a clinical trial for you where you could get a targeted therapy to pair with the AI, or perhaps you could be treated with Faslodex. Perhaps they will consider radiation of nodes. Or genomic testing.

MikaMika · May 2020

Hello,

I'm sorry about your pathology report and nodes involvement. Did your nodes show up as suspicious on scans? As I understand, molecular genetic tests are not predictive in case many lymph nodes are involved. So chemo still may be useful.

MikaMika · May 2020

ShetlandPony,

May I ask your opinion about Ibrance+Letrozole for early stage ILC? Does this treatment kill cancer cells or just lower Ki-67?

KMom57 · May 2020

One node was biopsy proven but clinically non palpable. Two or three (depending on who you ask) lit on PET. All of them are small. Biggest is 1.1 cm. No idea on the rest.

MikaMika · May 2020

KMom57,

On the positive side, you know that Letrozole+ovarian suppression works for you! This treatment shrank your tumor significantly! Maybe it worked similarly on your lymph nodes! And as I understand, you have clean PET scan! So...how old you will be in 2050?

KMom57 · May 2020

Mika Mika that last question made me smile. Thank you for that. I will be 87. I don’t know if it worked on the tumor. That’s the thing. I thought so, but the path says there was no apparent response. So I don’t know. Don’t know if the imaging was just wrong. Imaging has been a headache from the start. I just found a letter from my annual mammo/MRI in 2017 congratulating me that it was clean. It wasn’t. This was there and missed. But the final path did say there were no other tumors, and last Oct up til March multiple MRI/US said there were three other small satellite tumors in other areas. So maybe???

MikaMika · May 2020

KMom57,

Your treatment definitely worked!

Also, you mentioned that Ki-67 was lowered to 1 after one month on Letrozole! Again, success! As I read on this forum, some women with ILC got similar result (size, Ki-67) after chemotherapy.

And what your final pathology said about Ki-67?

beeline · May 2020

KMom57, I'm so sorry for what you're going through. I had a similar situation with imaging, though no neoadjuvant treatment because my tumour didn't show up on mammo and looked "tiny" on US, and lymph nodes looked clear on imaging. I was so shocked and devastated to learn I had 10 positive nodes when my surgical path came back. What I can say is that things do get easier over time, especially once you have a plan for next steps. I'm glad you have one medical professional you trust! I would also recommend looking into clinical trials for early-stage ER+ BC like this one:

https://clinicaltrials.gov/ct2/show/NCT03701334

I ended up getting randomised to the control arm (so no experimental drug), but I got an excellent MO out of it and much more monitoring than I would have otherwise. Good luck and hang in there!

KMom57 · May 2020

Thank you Shetland Pony, Mika Mika and Beeline. I appreciate your responding. I was pretty sad, and your responses helped me get through that night. Still sad. Still confused. But working through it. Trying to figure out what this means.

KMom57 · May 2020

Mikamika- they didn't do ki67 on the surgical path. MO is having that run now

KMom57 · May 2020

beeline - thanks for the link. I’m going to ask my MO about that

MikaMika · May 2020

KMom57,

I hope you'll get a good news from your MO!

Surgical Path so confused and sad

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