Change from ER+ to triple negative

Hello everyone. I didn’t know about this separate section for TNBC and so glad I have found it. I was diagnosed with secondaries (met in spine with biopsy not possible) in 2021 and all was going really well with the treatment having improvement. I was delighted and really thought I could ‘do this’, whatever that means. This year it has all gone wrong. In March something was showing on my liver which turned out to be one met too small to biopsy and the other too deep. There was also a met in my pubic bone. I was put on my second line treatment for ER+ BC. In July I was scanned again and there was worsening of the disease (I now have “at least 5 liver tumours”) but this enabled me to have a liver biopsy which has shown that I am no longer ER+ but still HER2-. They are now treating me as triple negative which has been such a blow. I have had 3 treatments of nab-paclitaxel (I had an allergic reaction to the paclitaxel) and I have just been told that I have the necessary protein to enable me to have immunotherapy - Pembrolizamub. The news of this was delivered in a very downbeat way. My consultant outlined all the side effects (which I know they have to do) and then proceeded to tell me that he didn’t know if it would work because it was trialled on people diagnosed with triple negative at the start and not on someone like me, who has transitioned to triple negative. I am feeling so very down at this new development and stunned how I can go from such a positive reaction to treatment to something so otherwise. Is there anyone out there who has also had a change to triple negative who can offer me some hope? My love to everyone x


Thanks i think its just that we want to be optimistic at the start. After being diagnosed i stayed working until my operation, (about 6
weeks) I said id be back after 3 weeks recovery. Ended up having a second operation. Now chemo will start, was initially advised that id only need Radiotherapy. I do not want to work during chemo, as i want to concentrate on my health and well-being. So am asuming its going to be about 6 month’s of chemo/Radiotherapy. My works policy is 6 months full pay and 6 months half pay, so i should be ok. Its just making sure i dont get too many calls about work. If i am feeling well then ok i can answer but health comes first.

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Hi Hattie I am not quite in the same position but I had a triple positive cancer, had all the treatment and went the whole nine yards with Herceptin etc then a year later got a new triple negative cancer. The treatment is different but the new drug pembrolizumab has just been authorised on the NHS for TNBC given with chemo. It is giving hope to lots of people. I was just too early for it so I am having Capecitabine instead after IV chemo surgery and radiation (again)
So far so good. There are lots more treatments now for TNBC so don’t be too gloomy. Wishing you well xx


Thank you, Nancy, for your uplifting message. I do feel encouraged by it and the gloom has started to lift. I just heard the words ‘triple negative’ and immediately panicked.I just felt so out of control. I wish you all the very best with your on-going treatment and thank you again for taking the time to write. With love xx

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:heart:Hattie :heart: Patricia Prijatel if you Google her is a 2 x tnbc survivor :heart: see if there are any trials you can go on too :heart: treatments are evolving all the time for all types of breast cancer :heart: do speak to a nurse on here to see if there are any trials you can speak to your team about :heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

Well im agency so ive had to take holiday/unpaid even though ive been in the civil service for 3.5 years! I have no luxury of sick pay!

Hi Shi. Thank you so much. I have not heard of Patricia so I will definitely look into her. I will also take up the trial question. You would think your oncologist would tell you about any potential trials, wouldn’t you, rather than leaving it to you to find out; especially when, as it sometimes happens, your brain isn’t quite functioning at meetings with them. All my best wishes to you, Shi x

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:heart: to you too Hattie :heart: keep us posted. Also contact metupuk they might know of any trials you might be eligible for too :heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx