Hi all,
I was diagnosed with ER+ HER 2+ secondary breast cancer 4 years ago. Did well on Phesgo for 3years. Then in the last year I’ve had progression on both Kadcyla and Enhertu.
I'm due to have a biopsy to check if HER2 status has changed. Oncologist seems to think it more likely that HER2 has found its way round Herceptin.
I'm absolutely terrified that if this is the case that I've run out of treatment options, as my understanding was that Herceptin was the treatment for HER 2+ cancers. I’m feeling so low, sad and panicked.
Has anyone else been in this position?
Judith
Hi Judith. I’m so sorry about your situation. I know the terror of progression.
Have you had the liquid biopsy test? It’s available privately. Mine was done through Roche and funded by BUPA. I know it might not be possible for everyone and I don’t want to be insensitive but it has been a literal lifeline for me.
I kept progressing on hormone treatments and then on capecitabine. I was looking down the barrel of IV chemo only.
The test found that my previous HER2 neg had become HER2 low and also found germline BRCA gene. This was a game changer as there is no known family history of this type of cancer. It’s opened up new treatments for me. I wish you luck. Please try to stay positive. Drugs are being developed all the time and there might be something around the corner for you.
Karen
Thank you for answering. Can I just ask is a liquid biopsy different from the one offered on the NHS?
i don’t have private health insurance but would be interested in finding out more about it and of course the cost.
thank you though, it might give me choices
hope you are doing well now
Judith
Thank you so much for your replies, they gave me hope while I waited for results. My biopsy also showed that the cancer had changed from Her2 positive to HER2 negative which was why all Herceptin based treatments had stopped working. So change of treatment and hopefully an improvement in outcomes.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007