Make sure you have your HER2 status tested

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I want to raise a really important issue about whether all hospitals are following the NICE guidelines and testing all women with early stage breast cancer for HER2. I would like to know Breast Cancer Care’s view on this.

I had an appointment with oncology at Derriford Hospital, Plymouth, in October 2007 following a mastectomy the previous month. When I inquired about my HER2 status I was told I hadn’t been tested because the hospital only tested those they considered to be high risk.

I was not given any written literature on HER2 so I could make an informed decision about whether to insist on testing. If I had known then what I know now - that 25% of breast cancers test positive for HER2 - then I certainly would have pressed for a test. But at the time I was v stressed because I had developed an infection in the site of my temporary saline expander. I simply put my trust in my oncologist that I was low risk for HER2.

In December 2007 I transferred my oncology to Treliske Hospital, Truro, where they DO follow the NICE guidelines on HER 2 testing. In early January I found out I had tested positive. This has meant that the profile of my disease and recommended treatment has changed. My 5 year survival rate has now reduced from 90% to 80% and chemotherapy, previously thought to be of little benefit, is now worth undertaking as the precursor to a course of Herceptin. Furthermore, Derriford’s decision led to a delay in my treatment, itself a risk.

Derriford Hospital appears to be gambling with women’s lives for the sake of saving A £20 test. Ultimately, I can’t help wondering if this is a way of rationing access to Herceptin.

So my advice to you all is make sure you get tested for HER2. I would like to hear of other women’s experiences of HER2 testing. How many other hospitals are ignoring the NICE guidelines?

Deborah

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Hi deborah,
Thats awfull that derriford hospital doesnt offer HER2 testing to all its breast cancer patients. I am also at treliske truro and i have found all the MDT and the care they give is exelent.Ive just finished chemo and about to start rads i was tested straight away after WLE and am HER2 negitive .I was told by my onc (Mr Thompson) that treliske was the first hospital in the country to offer herceptin to people who needed it regardless of the cost even though the hospital has previously had some finacecial problems. Have you already had chemo? I think its terrible some hospitals like you say seem to be takeing gambles with peoples lives. Your in very good hands now at treliske and hope that you will get all the treatment that you need.
Good Luck
All the Best
Lindiloo x

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Hi Deborah
That is sooo wrong. Having recieved such good care at the North Devon District Hospital it makes my blood boil to hear your story. I was tested for HER2 when they did my mastectomy (grade 3.x 4mm & lymph nodes) and got the results last week as positive along with assurance that I will be getting Herceptin after my chemo & rads.

I sincerely hope that you get the care you deserve at Truro

Good luck
Thelma xx

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Hi Deborah,

I live in South East Cornwall but am being treated at Derriford in Devon. Interestingly, my bc was found at a normal 3 yrly mammo (travelling unit) in Torpoint and the results came from Treliske, Truro. It was a recall to Derriford, which surprised me. My diagnosis in Jan 2003 was: 2 cm stage and grade 2, ER+ (PR not done = don’t know why Derriford don’t do this test). I had sample node resection with the WLE, 3/8 positive so went back for total axillary removal, another node +. 6 x FEC and 25 rads. Been on Arimidex for 4 yrs.

HER2 testing was not mentioned when I was dx and I only found out about it from this site, when there was the problem in HER2+ patients getting Herceptin. I contacted my Onc, who discharged me after chemo and rads and asked for the test. He said I could only have it done privately. I saw him at the Nuffield in Plymouth, the one hour consultation cost £120. He lectured me at length, saying it was a waste of time as I was 3 yrs out from chemo and even if positive he would not prescribe Herceptin as it needed to be given either with chemo, or within one year. I still insisted on the test, for my own peace of mind. Luckily I am HER2-. It took about 6 weeks for the results, and I was again surprised that I got a bill for £25 from Treliske, who had carried out the test. As Derriford is a Breast Care Centre of excellence, I don’t understand (a) why they are not testing all bc patients, and (b) why they can’t do the test in their own path lab.

I have just found the Onc’s response of 17 Oct 2005, to my original request in which he says:

“At the time you were diagnosed (Jan 2003) it was not routine practice to do HER2 testing or progesterone receptors and up to last week, we were only able to do HER2 testing on patients with recurrence or in the private sector. The rules are now changing but they have only been extended to newly diagnosied patients as a component of preventative therapy over the 12 months following diagnosis. It would not be normal to embark upon HER2 therapy at this stage, the evidence of benefit with Herceptin is when it is used in combination with chemotherapy in the immediate postoperative period. Nevertheless if you wish to have this test, it is available in the private sector and I would be happy to see you at the Nuffield and make the appropriate arrangements.”

I therefore assumed Deborah, that since Oct 2005, all newly diagnosed patients were being routinely tested for HER2 status, but this is obviously not the case, and I wonder why.

I am intrigued as to why you were transferred to Treliske for chemotherapy…is Treliske nearer to you than Derriford? The travelling time for me to both hospitals is about the same - one and a half hours, but I need to use a ferry if going to Derriford. I am still being seen by my bc surgeon, and am happy with my treatment on the whole.

Take care and hope your treatment goes well.
Liz.