primary tumor back and highly aggressive

LoveFromPhilly

Hello all!

It has been a long time since I have posted on this community board. I took a break for a while because I have been doing advocacy work with Living Beyond Breast Cancer and it has taken up a lot of my "cancer" energy. I hope to be able to take a moment and catch up a bit and see how everyone has been doing. I really miss having check in's with you all.

I am back again because I have been dealing with some changes to my MBC situation. The biggest concern I am having right now is that the cancer in my right breast, where the primary tumor has been and then completely shrunk on Ibrance/Letrozole, has now come back with a vengeance and is very high grade with a Ki67 of 75% (which my new MO told me is incredibly high especially for ER/PR+ breast cancers). I am meeting with the oncoplastic surgeon on Tuesday next week and getting shuttled into surgery ASAP.

I am wondering if anyone else has dealt with this and what are your thoughts and experiences?

My MO is taking the stance that he believes the cancer in the breast tumor is quite possibly different from the cancer in my bones (and maybe in my liver which is a mystery at this point because a CT scan and liver MRI showed multiple liver lesions and then the Petscan showed no metabolic activity. So either there are lesions there and they are "senescent" aka sleeping or somehow the first two scans were just wrong?

Looking for guidance from others.

Much love and hugs,

Philly

Anonymous

Oh Philly - so happy to see you! Although crappy circumstances. Honestly, its this sort of situation where sure all the studies say no surgery for de novo but on an individual level....Why not get it done when people are stronger and NOT in crisis? Why give it a chance to resurrect itself?

I hope someone will be along shortly to help, the only thing I can contribute is that new MO said they would only operate in a situation similar to yours. Could you keep us updated on the de novo thread?

Take care!

Bright55

Hi Philly

Bigg huggs my dear

All the best for surgery/ mastectomy

For me personally I was not denovo but had option for surgery and I choose it

All the best

Bright in hope

LoveFromPhilly

My dear SondraF! How have you been doing? Thank you for that reminder to keep you all posted on the de novo thread. My brain is having trouble wrapping around the possibility of the cancer coming back and having such a high Ki67. I am a bit nervous about what is ahead! I wonder if this has happened to anyone else or is it typical of post-CD4/6Kinase inhibitors? So many questions. I am trying to think of it as my tissues not cooperating and it is simply something we need to "get out" and trying not to think about the rest. It is kinda freaky my MO said they aren't concerned about clear margins but mostly about removing the aggressive tumor. Wow and yikes that freaks me out! Anyway I am trying not to dwell there too much right now and stay positive. Looking for stories of others who have been through this and are still here with us to give me some hope and optimism! The words highly aggressive don't sit very well with me and I have found myself psychologically trying to integrate it all and its not going so well. I am in the shock phase I think with glimmers of hope and laughter.

Love and hugs,

Philly

LoveFromPhilly

Bright55 Thank you so much for the big hugs taking them and squeezing!!! Was you cancer very aggressive and how did it go for you? Hugs, Philly

Heidihill

Hi Lovefromphilly

Sorry to hear your news but perhaps one can think of a highly aggressive as a tumor type highly sensitive to being killed by whatever therapy they're thinking for you, apart from surgery. This is after all what happened to HER2+ patients and the drug Herceptin. Hope that makes sense. In the end it's not how aggressive things are, but how much they respond to the drugs, right?