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Topic: primary tumor back and highly aggressive

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Feb 17, 2021 04:41AM

LoveFromPhilly wrote:

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

MBC de novo March 2017; innumerable bone mets; possible mets in liver? MSH6 mutation; Treatments: Ibrance/letrozole, lupron, xygeva, zometa, tamoxifen; faslodex; Currently Gemzar; BC skin mets and progression to bone marrow. Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy
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Feb 17, 2021 06:58AM SondraF wrote:

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!

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole) Surgery Prophylactic ovary removal
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Feb 17, 2021 11:15AM Bright55 wrote:

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

Dx 2011, DCIS, Right, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 2016, Right, 2cm, Stage IV, metastasized to lungs, ER+/PR+, HER2- Hormonal Therapy 7/10/2016 Femara (letrozole) Targeted Therapy 11/3/2019 Afinitor (everolimus) Hormonal Therapy 10/9/2020 Faslodex (fulvestrant) Targeted Therapy 10/9/2020 Kisqali Hormonal Therapy Liquid tamoxifen (Soltamox) Surgery Mastectomy: Right Hormonal Therapy Aromasin (exemestane)
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Feb 18, 2021 01:02AM LoveFromPhilly wrote:

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

MBC de novo March 2017; innumerable bone mets; possible mets in liver? MSH6 mutation; Treatments: Ibrance/letrozole, lupron, xygeva, zometa, tamoxifen; faslodex; Currently Gemzar; BC skin mets and progression to bone marrow. Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy
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Feb 18, 2021 01:03AM LoveFromPhilly wrote:

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

MBC de novo March 2017; innumerable bone mets; possible mets in liver? MSH6 mutation; Treatments: Ibrance/letrozole, lupron, xygeva, zometa, tamoxifen; faslodex; Currently Gemzar; BC skin mets and progression to bone marrow. Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy
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Feb 28, 2021 12:33PM Heidihill wrote:

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?

Dancing with Lt NED Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH)

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