Has anyone else been told their cancer is unsuitable for herceptin ? Can i ask what reasons you were given ? Does a cancer ever change from HER2 negative to HER2 positive ?

Thank you

Hi Claire
I’m not HER+ so I may not have the right answers however when the pathologists test the bc they are looking for receptors, either hormone or HER which will determine treatment. Some ladies are hormone positive for either ER or PR or both, usually hormone treatment is then used. Some are HER+ and then Herceptin can be used. It’s unlikely you would be given Herceptin if your receptor status is not high enough as I don’t think there’s any proven benefit. I believe your HER status can change between different recurrences but only from what I’ve read on here.
Hope that helps a bit and that other ladies may be able to give more info.


After having a masectomy i believe one of the tests they did on tumour was to see if it was HER+. Apparantly only 1 in 5 women are and if so you should be offered Herceptin which I have been and am due to start on 19th May.

I must admit I have not looked into it too much at the moment as I have tried to take one treatment at a time and get through that before worrying about next one (am due to have last chemo (tax) today).

I would appreciate any advice/information/experiences from any ladies who are due to have or are having or had Herceptin.

I believe there are information leaflets available on this site which you might want to try and access.

Good luck with whatever treatment you are having.

Anne x

I have been having herceptin for 3 years now as I have secondaries, and the only side effect I ever have is a dripping nose. It can cause flu like symptoms, especially on first dose, so you should be offered some paracetamol. It can affect the heart, so I have regular echocardiograms (like an ultrasound), which have all been fine.
Good luck with your treatment

Hello all, my first dx was HER2 neg in 2004. In 2008 I had a local recurrence in lymph nodes in my pectoral muscle and this was HER2 pos. So I don’t know whether it changed between times or whether it was always HER2 pos and for some reason it didn’t show. But i do know that the local recurrence seemed much more aggressive as it apparently spread very quickly to all the nodes in that area whereas the first one had apparently been around for quite a long time without me knowing and only 2 nodes in armpit were affected. Anyway, I had 17 doses of herceptin in 2008/9 and I had no SEs at all apart from flaky nails. So I’m keeping fingers crossed now and hope the herceptin worked.

Hi, I have had herceptin for 18 months now and the only side effects I have had are a runny nose and tiredness in the first week, i have had heart scans and all has been fine so far.I am her2+++ and was offered herceptin to be run in with my chemo which was docetaxol and carboplatin. for the last twelve months I have been having it on it’s own. goodluck.


I’ve been on Herceptin 2 years with secondaries. I did get a runny nose and flakey nails but my nails don’t seem as bad now and the runny nose seems to have stopped.


Hi claire

The BCC publication about herceptin may answer some of your queries, you can read or order it via this link:


The booklet contains information about our helpline and if you wish to speak to someone about herceptin then do give us a call.

Best wishes