told i cant have herceptin

can any one help ??
I have been told i have HER2 pos and had the lump removed in april
I saw the oncologist 2 weeks ago who put me on hormones for 5 years told me i would rads for 3 weeks followed by 3 boosters she then said i needed a year on herceptin (every 3 weeks)
I have now just been told that i am not getting herceptin as the Nice Regs say you must have Chemo first
so now i am very confused and very angry as she insisted that i needed it and now 2 weeks later i dont.
Is there any one out there that has herceptin without chemo
valerie

Hi Val
Sorry to hear that you are confused. I’m not an expert but I did have herceptin and I do recall seeing and hearing on many occasions that you can only have herceptin if you have chemotherapy. I’m not sure if this is because it doesn’t work unless you have chemotherapy but I do known that having chemotherapy makes it more effective. I started it with my 4th lot of chemotherapy. I’m not surprised you are confused and they obviously haven’t explained their reasoning. Sounds like your BC is also hormonal hence the hormonal drugs.

I’m sure you’ll get responses from other more informed ladies.
Best wishes
Ruby x

Hi Valerie,

I think if your onc has told you one minute you will have herceptin and the next that you wont cos you have to have chemo first she is very naughty. I would have thought by now all oncs know that these are tne NICE regs. I think there are some noises being made about giving herceptin without chemo but don’t know how far that has got. It does seem a bit ridiculous now when they seem to consider it is ok to ‘just’ give a patient tamoxifen for 5 years without chemo and not consider that is sufficient to make it ok to give herceptin. I would want to ask her if my cancer was her2+++ was it safe not to give chemo at this stage. I don’t know anyone myself who has done it that way.

Dawn
xx

Hi Valerie

I was her2++ and was told that herceptin is only licensed at the moment for use after or with chemo.

I was also told that for me, having chemo and herceptin would only make a 3% difference to recurrance, therefore I chose to just have 20 rads, zoladex and tamoxifen.

I wonder where the 3% figure comes from and how they really calculate these facts. I know that if I had not been able to have herceptin 5 years ago (am still on it) I would not be here now. Because my dx was before her2 was known about I had constant recurrences or new tumours then secondaries and at the point I ran out of chemo options they checked on my her2 status and where all chemos had failed for me herceptin worked. The problem is now with it being given routinely to her2+ patients with/after chemo we will never know what might have been.

Dawn

hi ladies ,thank you so much for getting back to me with your helpful comments.i have checked out what NICE says about the use of herceptin and i can see i wont be getting it.it seems the doctor i saw was new in the job and didnt realise it was only given after chemo,she was most apologetic but having insisted i really did need to be on it you can imagine how upset i was to be told i couldnt have it,not that i was looking forward to it ,its just it had taken me 2 weeks to get my head round the fact it gave me the best chance of avoiding recurrences.i am so glad its working well for you dawn and anyone else its helping,i am sure i will be relieved once i get my head round this latest in a long line of twists and turns of my roller coaster that i dont need it after all.keep your chins up girls i am grateful to everyone for their help valerie x x x

Hi Valerie

Im just a bit confused as to why you cant have chemo and herceptin if you choose?

I know the usual way round is to have chemo before rads, but it doesnt have to be this way round. I had finished my rads before they even got my her2 result (took 11 weeks from surgery). They said that I could have the chemo and herceptin after the rads.