Her2+, ER- breast cancer, grade 3

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Hi all, I’m Ake, age 40, grade 3 ductal carcinoma with DCIS, HER2+, ER- (don’t have PR results yet). I’m doing chemo before surgery, it’s been really hard to get things started but I finally started yesterday  - except that I had a mild allergic reaction to Phesgo so am in again today to try for the chemo. I havent had a very good experience so far. It just seems the team are so overwhelmed, and I’m not even under a consultant at my hospital but a Saturday outsourced clinic to clear the backlog! The frst person I saw through this was absolutely awful and really started things off on the wrong track, so much so that my amazing CNS managed to get me seen by someone else who was better but still from a different track. I’ve requested to be switched over to the main hospital clinics, we’ll see. In the meantime, I have had to chase my own appointments, scans etc and a huge amount like conversations about fertility, info about chemo, getting my premeds on time, and going through consent forms etc has all fallen through the cracks and had to be chased last minute. In the meantime, awaiting a call from a nurse to see what we can do now. Chemo wise I’m on Docetaxel and Carboplatin, and I’ve also got Phesgo for the HER2+ bit. It is good to finally get started, hopefully no more allergic reactions!

  • Hi, welcome to the forum nobody wanted to join!!  I’m so sorry you have had an awful experience up to now.  Can you contact MacMillan Support on 0808 808 0000.  They are open 7 days a week 8 until 8.  Explain to them what you’ve been through and they will advise you what your best steps are.  They are lovely people and have all the knowledge you need.  I wish you well on your journey and hope you get sorted.  Big hugs xx

  • Hi Ake,

    I am a few years ahead of you with a Her2, hormone negative diagnosis. Surgery, chemo and radiotherapy all done. I had a few issues at the hospital with mix ups and delays.

    We emailed the hospital PALS department setting out what had gone wrong and our concerns. They were great and looked into everything for us and sorted everything out. Each hospital has a PALS 

    I had the same treatment you are having I  found it really tough but got through it.

    Hope you get things sorted x

  • Thank you so much. I spoke to my CNS team and to PALS today but will try Macmillan next week if don't get any further.

  • Thanks Gilliebean, that is encouraging. I tried PALS today and they were helpful, hopefully things will get sorted next week.