I’m trying to find anyone with the same diagnosis as me as I am going slightly mad with the rollercoaster!!
Timeline:
Dec 2023 - Diagnosed at 50 with Left breast cancer- 2 tumours ( 1 x IDC and 1 x DCIS)
Jan 2024 - Left WLE and SNB - grade 3 IDC and DCIS, HER2 negative, 0 lymph nodes but Oncotype was 47 ( very high risk of recurrence)
April 2024 - Started chemotherapy (EC x 4 and Paclitaxel x 4)
Sept 2024 - Radiotherapy x 5 days
Jan 2025 - first Zoledronic acid infusion
Jan 2025 - started Letrozole
May 2025 - diagnosed secondary breast cancer metastasis in my Brain
June 2025 - had brain surgery to remove 95% of tumour due to its location
July 2025 - brain tumour histopathology is now HER2 positive!
July 2025 - Sterotactic Radiosurgery next week x 3 to zap the remaining brain tumour
Yesterday - Oncologist has given me a poor prognosis and wants me to start more chemo Docetaxel x 6 plus PHESGO to try and prevent more mets coming up for as long as they can
Is there anyone that’s gone through/ going through this ?? I just don’t know what to do for the best anymore. I’ve done everything to stop it coming back but it hasn’t worked! I was just getting my life back on track and recovering and now feel I have no hope
Thanks
I’m sorry I’ve not had a similar experience, but just wanted to say you’re in my thoughts. Sending you a virtual hug and as much positive vibes as possible. xxxxx
Dear Cazmuz
I’m so sorry you’re having such a horrible time. You absolutely must not blame yourself. I hate this modern view that we can “fight” cancer, which implies that if we do all the right things then we can beat it. Very sadly, for many ladies it’s not true. If you are doing everything your team advises then there’s nothing more you can do.
Breast cancer is a very variable disease. Most ladies are much luckier than you (if you can be “lucky” and have breast cancer) and so that makes it all the more difficult to understand why your cancer is so much harder to treat. But it is not your job to treat it. Your oncology team is doing their best and all you can do is follow their advice, which is what you are doing.
As for me, I am a bit luckier than you but much less lucky than many others. But we are all in it together.
Sending you a very big heartfelt hug and lots of love.
Please keep us informed of your decisions and progress. This is a horrible disease and we all live with fear in the back of our minds. Only you can decide on the treatment plan and we are here to support you every step of the way.
I understand your delimma-doing well, healing, and then to discover a recurrence. That happened to me as well! Just as I was beginning to feel better and less fatigued ( lobular in right breast, neoadjuvant chemo, mastectomy, radiation, estrogen blockers), my newly discovered axillary nodes are cancer. Even my oncologist was sure it was just a reaction from my recent fat grafting/ reconstruction surgery. My work up is just starting. Waiting is slow torture. I send you prayers, light, and strength to make the right decisions for you.