Her2+ but told I don't need Herceptin

bjj · 10-25-2005, 09:35 AM

Hi

I live in the uk. I was diagnosed with Breast cancer in January, had WLE and axillary clearance. My tumour was Grade 2 with no lymph node involvment. I had radiotherapy but not chemo. I got my HER2+ test back today and it was positive. The letter from oncologist said that she would not recommend Herceptin in my case. I think it is because my lymph nodes were clear and I didn't have chemo but I am very confused. I now know I have a more agressive form of breast cancer but have been told that I can't have the appropriate treatment. Can anyone help?

bjj

Deborah Phaed · 10-25-2005, 09:42 AM

I live in the US and am Stage 1, Grade 2, ER+/PR-, Her2+++, clear nodes, but my onc is giving me a year of Herceptin along with 6 chemo. Mine is a recurrance, but IMHO everyone who is Her+ should be receiving Herceptin.

All the best to you.

uma · 10-25-2005, 09:57 AM

bjj,
I will try to help. But, you have to clarify the folowing:
(1) You say You were diagnosed in January, and did WLE (which is same as Lumpectomy). Did they not do the FISH test for Her2/Neu immediately ?.
(2) They should have done the FISH test imediately to confirm Her2/Neu as positive.
(3) You say you got the Her2 test result today, nearly 10 months after WLE.
(4) Did they test for Her2/Neu by any other means and detected it new now?

Uma

bjj · 10-25-2005, 10:03 AM

Thanks for your replies.

They do not routinely test for HER2+ in the UK – although I think that it will be introduced soon.

My oncologist did not want to test at all but I have insisted – hence the delay.

I am not sure what test they used – I think it must have been IHC because the result came through quite quickly – I was told if it was sent for a further FISH test it would be about 6 weeks before I heard the result.

Does this help Uma? Please let me know if you need anymore info.

This was my first posting on this site – looks like a great supportive site.

Lolly · 10-25-2005, 10:10 AM

bjj, here's a link to an article which may provide you with some ammunition when you meet with your oncologist. Don't give up, you are in the drivers seat here! <3, Lolly

BBC News Herceptin Decision "Breakthrough"
http://news.bbc.co.uk/1/hi/england/cornwall/4354448.stm

Jeanette · 10-25-2005, 10:10 AM

Seems like you ladies in the UK have a really hard time getting Herceptin. I am originally from Scotland so I know how the health system works. You keep plugging and keep asking questions. Stay well, jeanette

Lolly · 10-25-2005, 10:14 AM

bjj, here's another article published in Brussels which cites the New England Journal of Medicine report on the early stage trial results...<3, Lolly

Medical Community Recognize Significance of Herceptin...
http://www.eurekalert.org/pub_releas...-mcr102005.php

uma · 10-25-2005, 11:09 AM

bjj,
If you are her2 positive and no ER positive, and if your heart LVEF (left Ventricular Ejection Factor) is about 60%, I believe you will be OK for Herceptin trials. Nothing to worry. Ask your Onc to get in touch with a well-known Onc in US to discuss, and then get on a Herceptin trial ASAP. Get some help to do a computer search in the herceptin trials website given by Joe in this group.

Note: I thought you may need help on LVEF, so added this. I did only echocardiagrams for LVEF, which is easier and safe. By MUGA, it may be a bit laborious. It is your or your Onc's choice

Wish you all the best.
Uma

uma · 10-25-2005, 12:08 PM

bjj,
I did some search for a herceptin trial in UK. here is the best for you:
http://www.cancerhelp.org.uk/trials/...=20&location=0

otherwise, go to wwwecancerhelp.org.uk.

For Herceptin trials in UK, new registrants are being taken till 12/31/2005.

Uma

bjj · 10-26-2005, 03:31 PM

Thanks very much Lolly for the links to two articles. Really appreciate your help.

I’ve phoned my oncologist’s secretary and she is going to send me the full path report. She thinks that the IHC test came back so conclusive that I am HER2+ that the FISH test wasn’t done. I can’t say I understand all of that yet – but I am learning!

Uma, I am HER2+ and ER+ which I gather isn’t a great combination!

Thanks for the link to Herceptin trials – it hasn’t spread so I am not sure that I am eligible for the one you sent me but I shall do some more searching. Hadn’t thought of this way of doing it.

Really appreciate all your help.

Thanks

Lisa · 10-27-2005, 09:10 AM

Bottom line I think is that if you are HER2 positive, you should be on Herceptin. In the past in the U.S., women were put on this only if they had bc mets. Now, thanks to recent trials, they are starting Herceptin after original bc if they are Her2 positive.

I was Her2+++ when originally diagnosed, with 20 negative lymph nodes and a small tumor. But at time, Herceptin wasn't an option. 3 and 1/2 years later, I had mets in several place and was started on Herceptin immediately.'

Hope you can work something out with your onc. Sounds like you already have some cheerleaders!

Love and light,

Lisa

suzan w · 10-28-2005, 06:03 AM

I am also her2+ and ER+...invasive lobular, bilateral mastectomy, neg. nodes...anyway, I am doing herceptin, after chemo(A/C) and arimidex for the ER+. Herceptin and tamoxifen are not a good combo. Good luck getting what you need!!!