I have been diagnosed with a grade 3, 9mm breast duct cancer which is ER positive. The HER2 IHC test came back back 2+ Borderline so they did a FISH test at UCHL which came back positive. I read on a website that HER2 test results can be different depending upon the rules of each lab and the criteria of positive and negative of different pathologist being different. Is this true?
Also is it always necessary to treat HR2 positive with chemo?
Many thanks
Hi I am also HER2 ER+.I have had two rounds of FEC already as neo adjunct therapy.HER2 can also vary within the same tumour.As it can be aggressive a great deal of research has been done at this BC line which offers chemotherapy and immunotherapy treatment,amongst others.
Your team will discuss and explain all your options to get the right one tailor made for you.
I have had little side effects apart from hair loss,scalp itching so I am collecting wigs now!
Best wishes for what you decide.
Hi I am also HER2 ER+.I have had two rounds of FEC already as neo adjunct therapy.HER2 can also vary within the same tumour.As it can be aggressive a great deal of research has been done at this BC line which offers chemotherapy and immunotherapy treatment,amongst others.
Your team will discuss and explain all your options to get the right one tailor made for you.
I have had little side effects apart from hair loss,scalp itching so I am collecting wigs now!
Best wishes for what you decide.
Hello OscarThe Catgotme here.
Thanks for the reply, but what does BC line mean please? Did you try the cold cap to prevent hair loss? Are you a lady or a gent please or is Oscar the name of a cat?
What is the decision you are referring to that I might have to make please?
Hello again TheCatgotmehere, I forgot to ask you what does neo adjunct therapy mean? I am set for surgery at the end of the month followed by potentially chemo followed then by radiotherapy. Have you had surgery yet?
Hi I'm having chemo and immunotherapy first,surgery,then maybe radio with immunotherapy continuing and hormone blocker.
Oscar was my cat who kept snuggling and walking over the boob,even though I'd had a clear scan and couldn't feel anything at the time.
I didn't try cold cap,even icecream can give me brain freeze and it adds time to being in the treatment room. As you have realized breast cancer is a collection of diseases eg different hormones affect them in different ways,like us HER2 ER+ but they can change further down the line.
I'm female.
If you had a clear scan how did they discover you had breast cancer? Was Oscar somehow responsible for that? How big is your tumour/mass? Mine is 9mm at maximum diameter and not yet formed into a tumour so nothing can be felt. Mine was discovered through routine breast screening.
Do you know the reasons for you having chemo, then immunology before surgery? When I saw my consultant on Tuesday he said if the HER2 was positive then potentially I might have chemo first too. However when the result did come through on Thursday, his secretary phoned to say that the surgery would be going ahead at the end of this month. I was told I would be given Herceptin (I think this is for 12 months) and she said (and I wonder if this was a mistake) and "possibly" chemo. That's why I asked originally if there are ever cases of HER2 positives not needing chemo - do you know if that might be the case?
For the ER Positive I was told I would be given Letrazol for 5 years and the major side effect being hot flushes. I am 64 years old and have been through the menapause so I know what that is like. How old are you?
Best wishes
Hi I am 63.Just after Oscar died we saw a friend who picked me up and spun me around.He had a phone in his pocket with keys my side that dug in,I felt in agony and it left me bruised,so I went to gp and got refered as it wasn't certain that it was from bruising or not.Glad I did,it was a lump about the same size as yours tracking to the nipple.
I'm having chemo before to shrink growth to have a lumpectomy.
There are some trials done for just immunology versus immunology and chemo and the results favour with chemo.Ask your oncologist or BCN or on here and they will be able to explain it.
Hi
i was diagnosed 3 1/2 years ago ER+ and HER2+. The treatment for HER2+ breast cancer is Herceptin, a newish drug which has meant huge improvements in survival rates for us women who have this type - but for the Herceptin to work effectively you have to have it alongside chemotherapy of some kind - these are NICE guidelines. Since I was diagnosed there is also another new drug , perjeta, but this is given before surgery , alongside the chemo and herceptin, to shrink the tumour , I believe the tumour has to fulfil certain criteria (not sure what they are) for this to be an option - chemo before surgery is called neo-adjuvant. I am not aware of different hospitals having their own definition of what is HER2+ or negative , I would have thought these were strict national guidelines authorised by NICE.
NICE is the National Institute for Health and Care Excellence
Hope this helps
Jo x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007