Not HER2+ - Good News or Bad News?

I have just been told by my consultant that my secondary spread is not after all Herceptin positive.This is after 3 treaments of Hercepin plus Taxotere. The reason for the mistake is that I originally had two primary cancers, one which was HER2+ and one which was not (I didn’t know this was the case and never received Herceptin for he original tumour). As I moved and changed hospitals/consutants just at the time I received the secondary diagnosis, there was some lack of immediate information and a decision to start herceptin immediately was made on limited case notes and subject to another FISH test. Now I am shocked as last time my consultant told me that being HER2+ at prrimary was not good (as more aggressive) but at secondary was better as more treatment options. What have other people been told about this? I suppose in some ways I am relieved not to hae to continue Herceptin indefinately, although not sure I would have had the Portacath fitted if I had known. Also, I am concerned that my treatment is now more limited - but does anyone else been told that non HER2+ is less aggressive at secondary stage?

Hi Patricia
No, I have not heard this. I have always thought it is best not to be HER2+ full stop. It does limit treatment options being HER2 negative but that does not necessarily mean it is better to be HER2+ I wouldn’t have thought. Still, we do rely on what oncs. tell us. I have secondary breast cancer and both primary and secondary are HER2 negative , in fact I am triple negative (not sure if you are) and I have been told by oncs. that only chemo available to treat me. However, chemo is supposedly quite effective for triple negative cancers - I have just finished a course of chemo and tumour in soft tissue is not visible and ‘only’ deposits are left in the bone (whatever they are !), so I have responded well. Hope this helps a bit
Ena x

Hi Patricia
I am still waiting to see if my original tumour was HER2 + but it has been explained to me that Herceptin gives a ‘level playing field’ chance of a good outcome with Tumours that are negative - so that really confirms what Ena has said. It seems as if before Herceptin women with positive results were at a disadvantage but that Herceptin has helped this position.
Alison x

Hello Patricia

I am Her2- I have secondary dx and was told in some ways that can be good as cancer is sometimes not so aggressive.
So far I have had 6 cycles of FEC and am now on Armidex and Zoladex.

My mets have been stable for 6 months now (I am due to have a scan this week) so I don’t know how they are at the moment

Regards Caroline

Hi Patricia

I think what matters now is how your cancer repsonds to treatment. Her2+ is generally considered ‘more aggressive’ than her2- but if you have a her2+ tumour which responds very well to herceptin then this changes everything.

Are you er+ and pr+ or er- and pr -? This will determine whether hormonals are an option for you.

Like Ena I am triple negative, and my regional recurrence hasn’t responded particularly well to loads of different chemos, but this far I don’t have evidence of major organ spread…one onc described my cancer as ‘persistnet and indolent’ which compared to very aggressive cnacers it has behaved…though for how long who knows. I have few tretament optiosn left but relatively limited spread…(though the tumours in my neck have caused damage to both my eyes and my voice.)…a strange place to be.

Hope you get a good response to taxotere.

best wishes