Newcomers Club / Welcome Wagon

[bjj]

I was only diagnosed a couple of weeks ago - I have been posting but hope it's ok to post on here as I very much feel a newcomer.

I live in the UK. I was diagnosed in January 2005, had WLE, axillary clearance. My tumour was 15mm, Grade 2 and ER+. I was told by my oncologist that I didn't need chemo as my lymph nodes were clear. I had radiotherapy.

I have been pushing and pushing to have my tumour tested for HER2+. My oncologist was very reluctant to do this stating it wasn't necessary, that it would be negative because I was ER+. I was only tested last month. Needless to say it turned out to be positive - IHC 3+.

My oncologist is now saying that I don't need Herceptin. I think it is because of lack of money in my area. I am very anxiously awaiting a second opinion from a LondonTeaching hospital that has been involved in the HERA trial.

At the moment I feel very very scared. I know that there is a higher risk of recurrence with HER2+ tumours and this seems to be high in the first couple of years. I am already a year down the line from finding my initial lump. Has anyone else been in this position.

Is IHC 3+ worse than 2+ and needing a FISH test? Is the rate of recurrence/prognosis worse?

I haven't had chemo and it seems to be that even if I am lucky to get Herceptin I will have to have chemo first. I am finding it hard to psyche myself up for treatment now when I feel well and was told earlier in the year that I wouldn't need it. It would have been easier for me to deal with if I had had it straight away. I feel like I have "done" breast cancer this year and am now having to go back and do it all again.

This is a great site. Thanks

bjj

[kristen]

Hi bjj,

Glad you have found us, sorry you had too. I have copied an older post from Joe about the differences between the 2 tests. I hope this will help you understand the differences.
There is much confusion about the results of IHC and FISH test results. They both measure different segments of the HER2/neu gene so there is no direct correlation.

The results of the IHC test are: 0,1,2,3 and 3+++

The results of the FISH test is a ratio of Chromosone 17 to HER2 genes and there are only two scores: positive or negative.

For an explaination of both tests go to:

http://www.her2support.org/her2fish.pdf


Regards
Joe
bjj, I can only tell you of my experience. I had a mastectomy and my surgeon sent off my tissue for path, and I had IHC first and with her if it's over 2, they send it out for FISH. It came back 3+++. My IHC was 2.6 and FISH came back at 7.6.
There is a lot of debate going on at one time if Herceptin was beneficial at early stage. It seemed to me the higher the better it worked. And as you pointed out with chemo, also better results. But I think that is all changing now with the new study results coming out. I am glad your in touch with the Teaching Hospital and bravo to you for keeping up and being pro-active on your health care. I am sure more educated people then me can help you out with these other questions, but I didn't want to keep you hanging. This is a new site for us and I know others will be here to help guide you and others with your questions. Sorry I couldn't be of more help.