3 year rollercoaster

[Warrio]

I just hit 3 years since my diagnosis of breast cancer invasive ductal carcinoma with lymph node involvement (auxiliary), Stage 3 HER2-, HR+. (Age35) Since then I have completed initial chemotherapy (AC &T), bilateral mastectomy, with reconstruction , 25 rounds of radiation to my left breast. Found out the cancer had spread to my brain (on my last day of radiation) at least 16 tumors, and lymph nodes in my chest. Followed by 10 rounds of whole brain radiation, multiple biopsies in my lymph nodes, hormone& ovarian suppression shots (every month for 2 years), 2 different oral chemotherapies (6mo each). With continued progression of cancer in my bones and spots of cancer in and out of my lungs and liver. Just over 1 year ago I had 10 rounds of radiation on my spine (T7-T9) for pain management .1 year ago I had my another port put in (1st was taken out with the mastectomy), 7 new tumors in my brain treated with SRS ( targeted radiation). Followed my a new chemo drug for low HER2+ ( biopsies showed I’m HER2+1). My first visits to the emergency room (3 in 2 weeks) the first one was for pain, 5 days later for neutropenic fever which lead to 7 days in the hospital on 4 different broad spectrum antibiotics , diagnosed with sepsis, and 4 days in they discover the cause was my gallbladder. So that was removed. In September 2023 my scans showed no active cancer, same for December 2023, March 2024, April 2024 (brain mri). Last week I had a follow up brain MRI to check if the growing spots were necrosis or cancer. The spots in question were necrosis! However a small spot seen in April at 2mm now in June is almost 9mm and several other small spots in my brain are being watched carefully.. in the next few sweeks I will go through 3 rounds of SRS radiation, I will also have a PET and see if the cancer is growing elsewhere.This is a frustrating journey. So grateful for the support I’ve received. Thank you for listening to my journey. I just needed to tell people who understand these things a little more.

[RWGR]

Hi Warrio, sorry to hear what you have been through. I think the suffering could be mainly caused by Her 2+ element as HR+ only would rarely develop so quickly. It seems proved too as after Her2+ element was found and you had targeted treatment, outcome has greatly improved. Just a though as a co-BC sufferer and a lay person. Hope further treatment will just buck the trend.

[Warrio in reply to RWGR]

thank you 😁💕

[ba5083]

Warrio - You have been through it. Curious what your Ki-67 was with a spread that fast. I too have HER2 with a score of 1+ but says Negative. In my pathology report is states HER2 (by immunohistorychemistry): Negative (Score 1+). Also wanted to share if you are not aware of the SHARE MBC page - healthunlocked.com/share-me...

Please never hesitate to rant or flat out be pissed off. That is what this forum is for. God Bless

[Warrio in reply to ba5083]

I don’t know my Ki-37. My ca-27, 29 I believe was slightly elevated. My signitera was positive at 0.83. I don’t know what that means but I will whe. I meet with my team next. Thanks for the info. I think I’m on that page as well. Wish you well