Wonderful UK Website

Joe · 11-12-2005, 07:13 AM

I stumbled upon this wonderful website in England. Although it is for all breast cancer, there are many HER2 positive women who post there. There are problems getting Herceptin approved for adjuvant use in the UK. I feel that we should visit this site to lend our support.

http://www.breastcancercare.org.uk/Home

Warmest Regards
Joe

Lolly · 11-12-2005, 10:46 AM

Thanks Joe, I'll visit this site as soon as I can. Had a little trouple loading it for some reason, but I'll try again later.

<3 Lolly

bjj · 11-13-2005, 04:43 AM

Thanks Joe

I am from the UK website - it's a brilliant site full of lots of supportive ladies. Getting Herceptin in the UK is a major problem - getting your oncologist to agree to a test is just the first hurdle. I first starting asking to get tested in May (my oncologist had never mentioned HER2, it was only because I had read up on it) and it was finally October when she caved in. She told me that there was no point because I was ER+ so it would come back negative. She's now told me that she will not be recommending Herceptin for me - I cannot understand why. My doctor (GP) says it is because there just isn't the money in this area to fund it. I am now going to a London Teaching Hospital for a second opinion - but I have had to fight all the way.

I went to a "Look Good Feel Better" cosmetic workshop run for cancer patients. There were about 6/7 ladies there with breast cancer and I was the only one who had heard of HER2 let alone been tested. This seems to be because there just isn't the money to give out the drug so the oncologists are not mentioning it or testing - that way if patients don't know about it they are not going to ask for Herceptin. It's awful.

Lolly - the web site has had technical difficulties lately and occasionally does play up - please keep trying.

thanks

bjj

Marlys · 11-13-2005, 10:41 AM

bjj
I too am E+++ and also Her2+++. The original biopsy revealed this so I am curious as to why your oncologist would say what she did about this. Good luck in getting Herceptin approved in the U.K.
Marlys

11-13-2005, 10:53 AM

The reason her Oncologist told her that (er/pr+ probably Her2-) is because in the past, what most oncs were seeing were cases of Her2+++ and er/pr-. I am highly er+ and weakly pr+ and one of the oncology nurses said that it is really odd that I am Her2+++. Having said that, in my support group, there are 5 of us who are Her2+++ and 3 of whom are er/pr+. I am, after much pushing (to be tested and treated) receiving a year of Herceptin.

Hope this helps.

Karen

Marlys · 11-13-2005, 11:07 AM

Karen,
Thanks for the explanation! I am a retired operating room nurse but when it comes to cancer treatments I am out of touch. I feel very fortunate that the day I had my second surgery (to get a wider margin) was the day the news about the results of herceptin trial was released. My onc originally felt I was not a candidate because I was node negative but by the time I finished chemo he started me on herceptin every 3 weeks. I had a mammo last Wednesday and it was clear which was really reassuring. When I started this I was unaware that Her2+ was such an aggressive cancer and I really have been anxious about this.
Marlts

Val Pfeiffer · 11-13-2005, 06:02 PM

I have visited this site and enjoy it very much. Be aware, however, that they do not allow you to reference links to other websites and they don't allow you to give your email address directly in your posts. I wasn't able to send information to one of the participants because of their strict policy.

And right now I am getting a refusal for the connection, which is probably just a function of my Mac--not sure.

have a peaceful week, everyone :-)
Val