Retesting HER 2 receptors


ellie was kind enough a summary of t the information on this on the on the secondary chat tonight- can the moderator post the link to the oncologist abstract, I have just been on the oncologist website for July but could not see this article? I need to have a read to see if I can really thrash this out with my oncologist.,


I don’t have a link, but is this about a leopard changing it’s spots? or more really a cancer changing it’s HER2 status?

If so I’ve heard some news about it, but would be interested to read more

Rebecca x

Thanks for bringing this up Cathy…I was borderline her2+ then FSH test came back negative. I have heard your status can change over time. Would be interested to read anything about this. Belinda…x


I’m being treated for a regional recurrence, and was retested for Her2 receptors - my oncologist told me that it was known that this status can change over time and wanted an up-to-date check.



Hi Bahons

Did you have a negative HER 2 test , and then retest ? how did the result come back?

I am looking for any ideas or evidence that support he idea that Herceptin could be effective when initially thought not. To be honest I think I am on a wild goose chase here but it gives me something constructive to research.


I wasn’t involved in live chat so missed this but am very interested as my initial tumour was only positive to 1 for HER2 so I have always been told that it would not be responsive to Herceptin. I asked again in September if it was possible that thestatus could have changed and my oncologist was positive that it would not and giving me Herceptin would just be giving me a drug for the sake of it.So that is when we decided to go down the Avastin route

Hi Kathryn

I had a negative Her2 test 4 years ago and a negative one again this year. My oncologist was quite emphatic that he needed to check because he said that they now know that the cancer can, as he put it, ‘evolve’.



Its of course much easier to check a regional recurrence for her2 than a tumour on liver or bone…where biopsy more invasive.

I was checked after regional recurrence and still her2-(triple negative). I think most tumours stay the same.


Still not sure about her2…I have read your her2 status can change, especially if you were borderline when first tested but then again I have read elsewhere that things don’t change. Er+ cancer changes over time, the cancer cells that respond the most to an individual hormonal therapy die off but leave the less responsive aggressive cells so maybe that’s the time for those er+ patients to be retested for her2? I’ll ask at my next appointment…I had 4 years of hormonal treatments, Tamoxifen, Arimidex then Aromasin. The first 2 worked really well but Aromasin didn’t work at all. There are other hormonals left to try, Faslodex. Megace…but have been told it’s probably all chemo treatments for me from now on.

I have read a few bits of research (though ironically I can’t access much of what I would like to read - and it is published by the company I used to work for) which suggests that some Her2-negative cancers might respond to herceptin. Wish I knew a bit more about it.

Also, there are trials of new hormonals that work differently to the existing ones, so if they are any good, we may be seeing them in the next few years.


I have recently found out that my HER2 status has changed. My original bone secondaries and a recent cancer in a lymph gland were both Her2 neg, however a ct scan in November revealed a new cancer in my existing breast and this is HER2 positive. My oncologist says this only happens in 5% of cases. As a result of this I am now having 6 x Taxotere and herceptin.

I have only had one Taxotere and found it really difficult, cant bear the thought of another 5, don’t suppose anyone has anything has anything comforting to say about it?


I think both ER and HER can change. My original tumour was said to be only weakly ER positive. Bipsies from later tumours showed that I was strongly ER Positive. HER can change too, but it is unlikely. However, I have also read about research on HER negative tumours where Herceptin (or it might have been Tykerb) was given and shown to have some effect.

I am about to start a phase 1 trial for a new type of hormonal drug called Abiraterone. It has been used on prostate cancer for a couple of years. Some of the twenty men from the original phase one trial who were very poorly at the start are now stable and well two and a half years later and the team at the Marsden are very excited about it. The drug works to block the production of oestrogen, as the aromatase inhibitors do, but much higher up the production chain. It is initially being tried on post menopausal women for whom other lines of hormonal treatment have failed. Belinda - I wonder whether it is worth finding out about this. There is also research going on to see how to resensitise cancer cells that have become resistant to hormone therapy so that they start to respond again.

Would love to hear from anybody else who has been invited to join the Abiraterone trial.


I also read something about tykerb and her2- tumours. I raised this with SJ at the Marsden in August and he said not.


Hi Deirdre, thanks, so much, for the information on Abiraterone, I’d never heard of it before. Hoping it works well for you…Good Luck…Belinda…x