Her2 positive and no herceptin?

I wonder if anyone can help. I had my mastectomy two weeks ago and we know that Im her2 positive and it was first mentioned that I would get chemo, tamoxifen and herceptin. Now ive been told that my likely course of treatment is radiotherapy, chemo, zoladex and tamoxifen.

I thought if you were Her2 positive the best thing you could get was herceptin? Is anyone else in this situation- I think I need to find out more on zoladex (think Ive got the name right)

Yvonne

Hi, I’m no expert but I agree with you, I think if your cancer is HER2 positive, then herceptin may help. I had a mastectomy nearly 3 years ago, followed by chemo, radiotherapy, more chemo, and finished off with a year on herceptin. I now just take one pil a day, tamoxofen. I also had zoladex injections as I was still getting a period, then in April this year I decided to have my ovaries taken out so I no longer needed zoladex (I was 37 when diagnosed).

I’m sure you will get some comments from more clued up ladies about the HER2 thing, but if I was you I would definately be asking my doctors about it. I didn’t have any side effects whatsoever from herceptin, it was a breeze compared to all the rest of the treatment, for me anyway…

Best wishes, Jackie.

I was under the assumption that the only Her2+ ladies who wouldn’t be given Herceptin were ones with heart conditions. I finished Herceptin back in May and had no real side effects apart from a slight sniff. I had no hormone involvement, so am on no further treatment and am on yearly review appointments.

hmmm, yes Im going to bring this issue up next time Im in the hospital. Thankyou Jackie and Cherub.

I think sometimes they refer to anyone with HER2+ as her2 positive, as opposed to HER2- (her2 negative). But herceptin is only give (I think) when you are very positive i.e.her2+++. I wonder if this is so in your case. If you are weakly positive I would has to have a FISH test which is a bit more accurate.

dawnhc

Hi dawnhc, Im sure I read on my notes that i was her2+++, but I will double check this.

I had a FISH test on the original biopsy which came back as ‘borderline’ at 1.9 Cut off point for herceptin on NICE guideline is 2. I then had a second FISH test performed on the nodes that came out at op. That was 2.3 and I now start Herceptin on 28th Nov. I was feeling pretty desperate for Herceptin as I’m ER neg and PR neg, so there was no where else to go, and if you read about Herceptin it is still heralded as the wonder drug for increasing your chances of no recurrence.

So go for it!

Td x

Thanks everyone for your help and comments- I found out today I will be getting herceptin! x

Excellent news! It made my outlook far more positive when i had that news. Well done.
Td x