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HER2/Herceptin 'positive' centres in UK (and elsewhere)
An email from a member of the group has highlighted a particlar (though not uncommon) problem - and perhaps an opportunity for the site.
In the UK, to quote the official figures, 'At present only 35 per cent of cancer centres in Britain routinely test for HER2 status on breast cancer diagnosis.'
As you all know, the support for funding expensive Herceptin based therapy is patchy. The way some centres deal with the possible financial impact of being faced with lots of patients requiring Herceptin is simply not to test for HER2 in the first place.
Of course, as a newbie first diagnosed, most people are unaware of HER2/Herceptin. So the treatment you get is a postcode (zip code) lottery. One person in area 'A' will get herceptin. Someone a few miles away won't even be told about its existence or be tested for HER2 status.
Until you start to plug into the information stream, then this site and others fill with messages from people wondering why them, and frightened by the idea that they may have been given less than the best option in terms of treatment.
If HER2 testing is not on the menu at (or simply denied by) your current oncology department and you strongly suspect or know you are HER2+, the one burning question has to be:
'Where the hell do I go for a second opinion on what treatment I should be having by people who I am confident understand and are supportive of Herceptin and other treatment options for HER2?'
A second opinion which will either allay their fears or provide the credible ammo required for some agitation and table banging at their local treatment centre. How many people reading this have 'Been there. Done that'?
There simply isn't a central list of 'Herceptin experienced and HER2 aware' centres or consultants for each country. Places (and sometimes people) that will do the right tests and give the right answers without regard to local policy, insurance status or care budgets.
Maybe we could compile one by country/region and have it on the site? We already do a lot of ad hoc referrals for people with this problem.
In the UK, I believe that these three places were involved in the HERA trial and therefore are more likely to be HER2 'positive' in the attitudinal sense.
Dr Andrew Wardley, Consultant Medical Oncologist from the Christie Hospital
Professor Ian Smith, Head of Breast cancer Oncology, Royal Marsden
Dr David Cameron, Consultant, Western Infirmary, Edinburgh
I will see if I can find more.
John L
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