Hi Helen, I've just spoken to hospital so just waiting for them to come back. May I ask ..how long have you had your liver mets for long? Hospital didn't seem keen to do biopsy but he did say he would do more investigation and get back to me. Cant thank you ladies for the support .... it was a very long night!!!
Hi Nicky, I just spoke to hospital and i'm HER2 Negative but I think he said my ERPR is positive. They are going to talk to prof and get back to me. So thanks very much for your help and I will keep you posted.
Would echo what Nicky has written - ask for a liver biopsy to check receptor status. Mine changed from HER2- to + and they aren't really sure what mine is at the moment - long story! Have bone & liver mets & have just asked for a referral to the Marsden.
Good luck with your treatments.
Hi Nicky, I'm delighted you replied .. I've been reading your messages and trying to work out if you had liver mets too.Your message has really helped ... I'd really written myself off. Sounds like you have done really well. I just hope it works for me for a bit too. I am going to call the hospital and ask about a liver biopsy and see what they say. I'm under Prof Johnson at the Marsden who is fantastic but he hasn't mentioned anything about liver biopsy. It's worth a try....
I will let you know what they say.
Can't thank you enough . Super hugs to you xxx
I can relate to your BC story completely! Primary BC in 2003 then bone mets in 2008 - both of course knocking me for 6, like you. For all this time I was hormone positive so treated with either chemo or hormone therapy. Come 2013 and I asked to have a CT scan as I had some pain in my hip/leg. This showed up progression in my bones but also liver mets. Completely devastated. However I had learnt from this forum (and only from here, no one else even my oncologist had suggested it) that receptor status can change. I requested a liver biopsy and found out from it that I was now HER2+ having been HER- for 10 years, I am still hormone positive.
I would suggest asking for a liver biopsy to confirm your current receptor status if this is possible before you start chemo. I know there would be a wait whilst this is done and results reported on but it sounds like your BC is similarly slow growing as mine is so it would seem it wouldn't suddenly run out of control. If your receptors were the same than it would have been a slight delay in starting taxol however if any had changed a more targeted treatment could be put in place. From what I have learnt from here, and subsequent conversations with various oncologists HER2 status can change in between 15 and 30% of cases, which is quite a few ladies maybe not getting the right treatment. The reason also to get one done (if your liver mets are accessible) would be to make sure you can have Herceptin and Pertuzamab given alongside Taotere rather than having taxol.
I hope this is of help and not confused you even more, or created more anguish, I just think it's worthwhile doing if you have a lesion that can be biopsied as I know bone and lung mets are very difficult to get a sample of.
Feel free to ask me anything else about this, I have had to learn a lot about my SBC to make sure I get the right treatment.