Breast Cancer HER2 Testing Accuracy and Does HER2 positive always need chemotherapy?

Hi 

As you mention if the IHC comes back as inconclusive the FISH test is more accurate and is either positive or negative.

Although the criteria can vary it isn't by very much tolerance wise and I think I would much prefer them to say it is positive when actually slightly negative than vice-versa. Considering how aggressive and prone to recurrence/secondaries HER2+positive variant is deemed.

J was diagnosed triple positive HER2+ with ER/PR+ and had chemo along with Herceptin It wasn't a walk in the park but 8 years later she is still here and we are enjoying the new normal. We have a great deal to thank Herceptin and for those recently diagnosed Perjeta is an added bonus.

NICE only funds Herceptin and Perjeta if given in conjunction with chemotherapy, so get the good stuff you have to bite the bullet.

Nearly everyone fears the thought of chemo but once you start the sessions get ticked off quite quickly - HER2+ used to be considered one of the worse types of BC to get diagnosed with but Herceptin / Perjeta have changed all that and are literally life savers.

Sorry to lay it out like this but J managed to get Herceptin when it was the original postcode lottery drug and we are so pleased that she did. Who knows where this scenario 8 years on could have panned out without these amazing drugs.

Hugs, G n' J

Hello Jo

Thanks for your message.  Are you all clear now?  Are you still having any treatment/medication?  How bad is the chemo, what side effects did you get?  Did you lose your hair?  Has it grown back now?  Did you try the cold cap or know of anyone that has and did it work?  How old are you?

I hope you don't mind me asking you all of these questions

Best wishes - J x

Hi

Yes as far as I know I am clear , I had Herceptin for a year (standard treatment) until November 2017 and am now on Tamoxifen for the ER+ part of my breast cancer. I didn’t cold cap , and I did lose my hair , but weirdly it didn’t bother me that much , even though my hair was long before. There are other side effects with chemo which bothered me more , but generally it is all doable, not always pleasant but doable. I was just 51 when diagnosed and I am now 54, if you click on my “name” you can see my long story- I am currently recovering from a delayed reconstruction (I had a mastectomy) but I am so glad to have been able to have fantastic treatment and still be here- you will still be in shock , and I know I felt that I was living in some weird parallel universe, I felt fine but had to have all this treatment which made me feel worse for a time..., but you will come to terms with everything , I tried to second guess what would happen and when ,  but with experience now know this is pointless as things can change , and everyone has a slightly different experience. 

I do know several people who cold capped , most lost some hair but not enough for anyone to really notice. There is a monthly chemo thread which would be a good place to look and ask questions. 

This forum itself is a good safe place to come to ask questions and look at some of the threads , but just be aware that we are all different so what happens to one person may not happen to you. 

Hope this helps, happy to answer any questions you may have 

Jo x

Hi focus3, mine cannot be felt, what does that mean not yet formed into a tumour. I know minevis 11mm xx