I am hoping that you lovely people will help me with this one: I’d really like to know how many of you are being treated with Herceptin etc. for HER-2+ cancers but have no organ involvement.
This is because I want to get my secondary tumour(s) biopsied to find out if I would now benefit from Herceptin, but my consultant is saying it’s not worth it as my cancer isn’t behaving like it’s HER+ as only my bones and lymph nodes are affected after 7 years with mets (although my latest scan results are due on Tues., so watch this space…!). But, of course, I keep thinking of Dawn (yes! You! I hope you don’t mind me talking about you like this! 
), and wonder how many others have HER+ cancer with no organ involvement. I know that Dawn is special, but is she unique?!
Hi Angelfalls
My primary in 2003 was ER+ and PR+ but no HER testing was done at that stage. I had a local recurrence in 2008 which was ER+, PR+ but HER-, and at this time bone mets were also found. I was treated with chemo then hormone treatment until earlier this year when I had bone mets progression and, unfortunately mets were also found in my liver. At this point, having read on here that about 30% of HER- secondaries can change receptor status, I had a liver biopsy done. My oncologist was very surprised to find out that I was now ER+, PR+ and HER+ as I too had not shown any ‘characteristics’ of being HER+ (whatever that might mean!) and I had had bone mets for 5 years with no progression. I also do know of a lady, not on here, who only has bone mets but is HER+ and has been since her secondary diagnosis some 10 years ago. She is treated with herceptin, plus bone strengtheners, although had chemo to begin with.
If it’s worrying you maybe a biopsy of one of the lymph nodes wouldn’t be too intrusive? I know a bone biopsy is meant to be difficult and painful and I can vouch for the fact that a liver biospy is not something you’d like to repeat!
Nicky x