Hi I have had surgery three weeks ago to remove DCIS surrounded by grade 1, which is both ER+ and, very unusually, HER2+. It was a tiny 9mm and nothing in the nodes. I have been told that the onc will recommend Herceptin but that it can only be given with chemo which I don’t really need. Has anyone else gone through this? The hosp has repeated the HER2 test as they didn’t believe the first positive result!
Whilst you are waiting for the other users to reply with their support and experiences you might find it helpful to talk things through with a member of staff on the BCC helpline. Here you can share your thoughts and concerns with someone who will offer you listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
I’m in a similar situation to you - mine was 2cm stage 1 grade1 both ER+ and Her2+ - originally inconclusive Her2 on core biopsy and then positive after surgery. I was told about the Her2 yesterday and couldn’t believe it as grade 1 is slow growing and it looks like Her2 is aggressive. I’ve been in a bit of a tiss as can’t find anyone on this site with the same diagnosis who has gone through treatment but I’ve been told the survival rate is very similar to Er+ Her2 neg. When do you start your treatment?
Thanks Judi that really is encouraging. Since they told me it was Her2 positive on Friday (already knew it was ER+) I’ve been in a state of shock - wasn’t expecting that with a grade 1 tumour, especially as original result before surgery was inconclusive. Mine was just under 2cm IDC/DCIS so still stage 1 and was thinking that I would only need rads. I have made the mistKe of trawling the Internet and reading some horror stories about treatment and have spent the weekend in tears so it’s good to know that there are positives x
Hi I was beginning to think that I was the only person with stage 1 and double positive! I think the prospect of chemo has thrown me more than the original diagnosis, I was cool about it. I understand how tiny and non-invasive my cancer is. I prepared myself for WLE/SNB and rads but chemo? No way would I need that, I only have teeny cancer. It feels like this suddenly got very real and very serious. I have my first appointment with an oncologist tomorrow so I guess I will know the next steps for sure then. I know my consultant/BCN are very keen to to overtreat me but I can’t make up my mind which is worse, getting chemo/herceptin or not! By a fluke of geography, rather than necessity, I am at probably the most well known cancer hospital in the country and I’m not sure that it is the best place to be a bit of a curiosity.
Me too - I couldn’t find anyone on here who was stage 1 grade1 double positive and I naively thought that Her2 was usually grade 3 cancers which is why it came as such a shock. At least we are also ER and PR positive which, from what I can see, is a good thing x
OK, just back from oncologist - no chemo!!! Straight to rads. YAY! :cathappy:
The reasons being:
The survival rate and chance of not spreading over 5 years goes up by about 5% (from 85 to 90) if you have chemo/herceptin but this is based on grade 2 or 3 cancer not grade 1 (we are rare as you know) which has even higher survival rates.
My lump was just less than 1cm (thank you prof mammogram) so is in the potential for chemo rather than automatic.
I also have high blood pressure controlled by meds so my risk from herceptin is much greater than the benefits.
Hope this makes sense, I am so elated that I can hardly string a sentence together. Now just have to wait for date to start rads. I can finally open that new tube of mascara that I was worrying about wasting (the random things we worry about!).
So pleased for you Mirella - what a relief that must be. As you said your lump was very small at 1cm whereas mine was just under 2cm, although still grade 1. I have appointment with consultant on 22nd after he has discussed my case with oncologist and then I will have appointment with oncologist. It all seems to be moving too slowly for me and I just want to get my treatment plan sorted. I also have a wedding to go to on 23 July in Italy - worried if I have chemo before I go my hair will start falling out over there! The things we worry about eh! I spoke to a friend who had chemo and rads and she said the rads were fine. I have read that there is a new rads machine - DIBH - which protects the heart and you can see how it works on YouTube. Carole x