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

I know our hospital test as a matter of course for HER2+ as well as the ER+, ER- etc on everyone who has had a diagnosis of breast cancer.

I notice that you’ve said that 25% of breast cancers test positive for HER2- but I presume you mean HER2+?!

I wonder how many women are aware at the point of surgery when they remove the tumour that it’s going to be tested. My initial diagnosis was 13 years ago and HER2 status wasn’t even on the radar and I was never told what my tumour was (can’t compare then with now) but I was then tested 3 years ago (from my original slides) to see if I was HER2+ which I thought was amazing that they still had it.

Pinkdove

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Hi Deborah,
I have tried to post a reply to you twice, it comes up on the screen when I press “add your comments” but disappears, as a number of other responses by others have done. Don’t know what is happening, but perhaps third time lucky.

I am being treated at Derriford, although I live in South East Cornwall. I was dx in Jan 2003 with a 2 cm idc, plus DCIS and 4/18 lymph nodes. My ER was done, PR not, and neither was HER2. I only found out about the HER2 test from this site. I did contact my Onc (now retired) to ask for a test and he said I could only have it done privately, as I was too long out of chemo. I saw him at the Nuffield in Plymouth on the 9th Nov 2005. paid £125 for the consultation and I think £25 for the test. Interesting that the test was done at Treliske. He told me categorically that even if I was positive he would not prescribe Herceptin, but I insisted on the test for my own piece of mind. I received his reply on 1st March 2006 - and that was going privately! I had to write to him for them. Luckily I was HER2-, but that is not the point is it? If I had been positive I would have paid privately for Herceptin, but was never given the option, and by the time I had the test, I couldn’t have it anyway. An appalling situation, especially as I understand Derriford is a breast care centre of excellence.

I have just looked up my medical file and you may be interested to learn of his initial response (dtaed 17/10/2005)to my request for an HER2 test:

“At the time you were first diagnosed 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 diagnosed 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 conbination with chemotherapy in the immediate postoperative period.Nevertheless if you wish to have this test it is available in the priave sector and I would be happy to see you at the Nuffield and make the appropriate arrangements.”…

I am staggered that you were not tested at Derriford last Oct/Nov. I don’t know your status, but I would have thought having a mastectomy was enough to warrant the test. I don’t know if I was considered “high risk” - the cancer had spread to my lymph nodes and I had a total axillary resection after the WLE and sample node removal. In addition, my father died of colon cancer at 59 yrs, and my twin brother of brain cancer at 50 yrs. I have an auto-immune disease, Crohn’s, which I know puts me at high risk for bowel cancer but both the bc surgeon (whom I do trust) and the Oncologist said this is not related to breast cancer. Who knows anymore?

I am intrigued as to how you got transferred to Treliske. Was this because it is nearer to your home? Living in Cornwall, I don’t know why, after my 3 yrly mammo (which was done at a travelling unit in Torpoint, but tested at Treliske) I was recalled to Derriford. The NHS does seem to work in mysterious ways.

Sounds like you made the right decision, and I hope all goes well with the Herceptin treatment.
Take care,
Liz in South East Cornwall (Rame Peninsular)

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Hi folks,

Nottingham test as a matter of routine. My first lump was tested in 2005 and I was HR2-. A local recurrence last August proved to be HR2+. I think they testing must have changed a bit between those dates.
Carol

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i was tested for all three and glad to see that my HR was very weak, all women should be tested, it really does sound like a postcode lottery
Alisonxxxx

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As a newcomer to all this what is HER2?

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Hi gckenyon

HER2 = an acronym for human epidermal growth factor 2

HER2 is a gene that sends control signals to your cells, telling them to grow, divide, and make repairs. A healthy breast has 2 copies of the HER2 gene. Some kinds of breast cancer get started when a breast cell has more than 2 copies of that gene, and those copies start over-producting the HER2 protein. As a result, the affected cells grow and divide much too quickly.

The HER2 gene is not inherited from your parents. The most likely cause of this problem is ageing and wear and tear on the body. It is not yet known if environmental factors (pollution,smoke,fumes) are part of the cause of this problem.

If your breast cancer is tested for HER2 status, the results will be graded as positive or negative. If your results are graded as HER2 positive, that means that your HER2 genes are over-producing the HER2 protein, and that those cells are growing rapidly and creating the cancer. If your results are HER2 negative, then the HER2 protein is not causing the cancer.

Treatment for HER2+ - Herceptin is a drug which is currently being used to treat HER2 positive breast cancer. It is a targeted therapy, and is also referred to as an immune treatment. The drug is given intravenously, once every 2-3 weeks. Once it is in your system, Herceptin targets the HER2 protein production. This helps to stop the growth of the HER2 positive cells.

Tests for HER2 breast cancer:
* IHC - ImmunoHistoChemistry - this test measure the production of the HER2 protein by the tumour. The test results are ranked as O,1+, 2+ or 3+. If the results are 3+ your cancer is HER2 positive.

*FISH - Fluorescence In Situ Hybridization - this test uses fluorescent probes to look at the number of HER2 gene copies in a tumour cell. If there are more than 2 copies of the HER2 gene, then the cancer is HER2 positive.

HER2 positive breast cancer is diagnosed by the IHC or FISH test. A result of HER2+ is important, as it indicates that the cancer can be treated with Herceptin., in combination with other chemotherapy drugs. If your cancer is dx as HER2+ it is most likely aggressive. Starting treatment as sson as possible will help improve survival, as well as help to prevent recurrence.

Sorry if this is too much information - but you did ask!

Liz.

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Hi gckenyon

Others here will give you a more in depth answer if you wish. I can never remember it.
HER2 is a test carried out on cancer cells to see if they have the receptors for the drug Herceptin. My BC nurse said think of the test as looking to see if the cells have a ‘docking station’ for the drug carrying spaceship ( I think she worked with children in a previous career). If you have the receptors you are classed as HER2+ the more plus’s the more receptive (But no so good, the more aggressive so I am led to believe)
You should be able to have treatment involving Herceptin with HER2/3.
If you are HER2- (negative) then Herceptin will not be of benefit.

I think that’s right, I am having Herceptin so if I haven’t got it quite right I will be glad to be more informed.

Regards
Carol

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Hi Lizziecee
you posted just before me and your explanation is helpful. thank you

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Thanks to everyone who responded to my initial message. I’ve been offline for a while as I’m mid chemo and have been feeling rotten.

However, since I posted I’ve been to see my MP Julia Goldsworthy who’s taken my concerns very seriously. She’s going to write to Derriford and also is going to as a question in the House of Commons about how many hospitals are following the NICE guidelines re HER2 testing. I’ll keep you posted on what responses she gets. I’ve also got my local paper interested in running a story.

I believe that every hospital should follow the NICE guidelines and test every patient with primary breast cancer for HER2. We should not have to get these tests done privately!

Lizicee, I’ll try to private message you - good to hear from someone else from Cornwall.

Deborah