Posted on behalf on new user oliver
Hi,
I was diagnosed in August 2010 with DCIS which is HER2+. Nodes were not affected and I had mastectomy and am now on Tamoxifen.
I was not offered Herceptin which I understand is the treatment for HER2 cancers, but was put onto Tamoxifen, no chemo, no radiotherapy. I am concerned that my chances of recurrence are high. Is there anyone else ot there in the same situation?
Hi
Wonder how strongly you scored on the herceptin scale? I was a 2 out of 3 which was borderline. They then did a FISH test which came back positive, meaning that I would benefit from herceptin.
However, as I had no nodes affected and was 100% positive for both hormones, my onc said that there was only a 3% benefit in having the chemo and herceptin, so I opted not to have it (onc said that if it were his wife he would say not to have it too as the risks outweighed the benefits). I had rads (as i had a wle) and then zoladex and tamoxifen.
This was over 3.5 years ago and so far so good.
Perhaps the fact the you had DCIS and not invasive cancer the risks outweighed the benefit from chemo and herceptin?
Yes - there’s HER+, HER++ and HER+++ - and the HER+++ people have Herceptin. But you have to have chemo as well, I think…
I wasn’t told how high I scored on the scale and wasn’t aware that there was one but I am back at hospital in Oct so I’ll ask.
My cancer was high grade, lump was approx 3.5cm and I had micro invasive disease, so it had just started to invade the breast tissue. I tested negative for hormones.
I should have asked these questions at the time but think I’ve been in shock. I had my mastectomy in Sept last year and a reconstruction with an implant, but unfortunately I had an infection around the implant and it had to be removed 6 weeks later. I’m just getting used to living with only one breast.
I think you need to speak to your onc about all of this. You cant be negative for hormones if you have been put on tamoxifen.