is herceptin available in the uk for primary b c ?

Hi i m a new member , first posting , just wondering if anyone knows how to get herceptin treatment in the uk for primary breast cancer, i m willing to pay whatever it takes ! any information gratefully received.

Dear Lia,

Technically, no, but it may depend on the circumstances and the recent trial findings. I know of just two cases where women with primary BC have been offered herceptin or herceptin-based chemo and in both cases the women were stage III. However, as you are probably aware, just recently findings came out that show that herceptin prevents recurrences, so that may change things.

A friend who is a long-time AIDS survivor (and you don't become one of those without becoming an expert on the healthcare system) said that to have any chance of getting treatment that is not authorised under the NICE guidelines, you need to go to as senior a consultant as possible. You may need to sign "compassionate release" paperwork, basically waiving all rights if it goes wrong, which I think means that you couldn't sue them, but they are very hard to sue anyways. He said that money generally isn't the issue.

The main risk involved is that herceptin, when given after adriamycin can lead to heart problems. Unfortunately, the herceptin-based combos that don't have this risk, such as herceptin given with (taxotere or taxol) with or without carboplatin haven't yet gone through the trials proving their effectiveness. Epirubicin is also known to be gentler on the heart than adriamycin, but again there is the effectiveness issue involved.

My observation on UK consultants is that some of them will do things two seconds after the phase III results come out (my oncologist is like this fortunately), while others wait until the NICE guidelines change, which is usually years after the trial results are known. I doubt he would give me herceptin, though, because the data right now show that herceptin works for women who are less than six months out of chemo, although it can't hurt to ask.

Let me know how you get on.

Best wishes,

Christine

Yes. It isn't normally available for early stage cases as it falls outside NICE guidelines. In other words it is a lottery with your local NHS provider and the clout of your consultant (or his/her budget).

However, it is made available off-label privately through most cancer centres. My wife is HER2+++ er-/pr- node-negative, but was put on 12 months of Herceptin (FEC100 then H + Docetaxel)) last August as she was high risk for recurrence.

It isn't cheap but if you shop around some consultants try to keep the costs and arrangements on the 'humane' side when not dealing with insurance companies. Best bet is to get your GP, surgeon or local hospital to refer you privately to a specialist centre like the Royal Marsden where they are a bit more savvy on what's available and how - given that they run many trials and doing off label regimens seems less of a problem. In fact, I'd pick somewhere that is running HERA trials as the pharmacy is not short of the raw material!!

I think with some wheedling you can probably swing it so you only have to cover the cost of the non-NHS bits. So you might get the normal adjuvant courtesy of HMG and just have to pay for the Herceptin rather than the full service treatment.

Good luck.