Help!!
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
Hi MURKA
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hi there
I was diagnosis with metastatic breast cancer just a month before you and am around the same age so I have some idea of how crazy you will be feeling now. I had a scan just a few months ago to check my brain as I have had terrible headaches. I also know one of the other ladies in my support group who has had a met on her brain. It is so scary.
The good news is that the radiotherapy will work and along with the new meds it will help. Often doctors prognosis is worst case so it sounds doom and gloom. If they have given you a course of treatment then they are weighing up that the chances are more likely to be good for you than not. Hold on to the hope!
Hi TheaT
thank you for your message and you’re right it does all seem like doom and gloom at the moment for me but am clinging on to hope knowing that the next 6 months will be awful again on chemo etc but hope that better days will come and that I can regain some normality in my life whilst recovering and knowing that I’m doing all I can to stop this awful disease in its tracks for as long as I can.
Sending kindness X
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