Hello everyone I'm new here

[Ally]

I just wanted to say hi to everyone here

Some of you may know me already as I post regularly on the Breast Cancer Support board.

I am 41 years old and was first diagnosed in October 2003 then I had bone mets diagnosed in Feb 04. I had an IHC test last year which gave a result as 2 (borderline) but because I moved last year and changed my oncologist I only received the result of the FISH test last week which was 2.7:1, positive apparantly.

I am in the UK and my onc. has told me that I can have Herceptin but he doesn't want to give it to me until if and when (his words) I recur again (my bone mets were knocked back with the CMF chemo which ended May 04 and haven't reappeared since). I have another bone scan due within the next few weeks because I am having some pain on one of my legs but my onc. doesn't think that it is anything related to the BC - we'll see!

I don't know much abour HER2 status issues but am going to learn as much as I can and this definitely seems the right place to learn.

I hope to get to know you all.

Ally xx

[tammymarie]

Hi Ally, I am new here too. I am a member at web md, but I just found this site last week, it sure is great to here other stories. It really gives me hope!! Welcome.
Tammy

[al from canada]

Hello Ally,

Welcome to our group!

Your story reminds me of what an oncologist in Ohio said recently to a buddy of mine with bowel cancer:

"well, it appears from the lastest scan that your cancer has spread outside its original site.... I think we should wait to see if it speads or grows any further before we talk about a course of action"

No kidding!

We know that BC, once it spreads to the bones or otherwise is systemic.... your onc is basically saying the same thing to you. "let's wait until it spreads before we talk about herceptin"

Ludicrous, that's all I have to say! HER2 positive and NOT getting herceptin is serious stuff! This could be the difference between living and dying.

I would demand herceptin and failing that; find a new onc. Maybe other members in the U.K. can help direct you.

Good luck, Al

[mamacze]

Hi Ally,
Welcome! I think you'll find this site as welcoming and warm as the breast cancer support board. Keep reading and asking and hopefully you will figure out what is best for you!
Love Kim (from CT)

[suzan w]

Welcome!!! I am in the Seattle area, dx'd 5/05 bilateral mast. 6/05 Her2+++ ER+ PR+, invasive lobular cancer, in the midst now of 6 rounds of A/C (ugh...tongue dragging)but will conquer this s*#t!!!

[Lolly]

Ally, welcome, and I just have to say I agree with Al. Fight for Herceptin, as it could make such a huge difference for you. IF you wait to recurr who knows where you will recurr? Some sites are obviously more serious than others, and you don't want to wait until you have brain mets to start Herceptin!!! You have Stage IV Her2+ disease, and Herceptin is STANDARD OF CARE here in the US for Stage IV Her2+ disease. Make yourself heard to your onc.

<3,
Lolly

[*_Cindi_*]

I ABSOLUTELY agree with Al and Lolly. BC stage IV is a systemic disease. Herceptin could keep you in remission for a very long time and it IS standard of care in the US.

Require this from your Onc. or switch Oncs.

[AlaskaAngel]

Hi Ally,

The medical system in Britain is giving bc survivors a much harder time when it comes to Herceptin. I agree with Lolly, Al, etc. that the sooner you are able to get Herceptin the better, even though it doesn't always work for everyone. If you read my posts on the other boards you know I have never been gung-ho about chemo, so take that into consideration. The clinical trials for use with early stage bc indicate clearly that it is useful.

I know there is a woman on this board in Great Britain who is getting Herceptin but she is having to pay for it out of pocket and it costs thousands (big bucks whether you are British or not).

You can probably explain the problem to people here in the States better than I can, Ally -- but I do think if you can correspond with the Christine on this board who is in Great Britain she might have some info on the duration of treatment, etc.

Much love,

AlaskaAngel

[Ally]

Thank you everybody. I will do some research and talk to my onc. when I see him in a couple of week's time.

I appreciate your input and will very likely be asking lots of questions as I go through this. I hope that you all don't mind!

Love Ally xxx