Hospitals ignoring NICE guidelines on HER2 testing

Public Archive
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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

At the time my biopsies were done I actually requested that they be sent away to be analysed privately (the rest of my treatment has been on the NHS) which was organised by my consultant as I wanted the results back asap. The results were back within 5 days and I knew at that stage it was positive for breast cancer. I can’t remember whether I was told at that point I was HER2+ but when I saw the oncologist a week before I started chemo he told me then what my treatment plan was including the fact I was HER2+ and that I would be given herceptin with my 4th lot of chemo and ongoing for a year.

Seems like my hospital is following NICE guidelines and I do remember the guidelines being mentioned on a number of ocassions i.e. when I wanted things to happen faster than they were happening and I was told that they were following NICE guidelines. My consultant was very sympathetic to me though and did try and organise all my tests, scans, biopsies etc quickly.

Best wishes
Ruby

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Hi Deborah

Yes this is shocking. Another postcode lottery. I am not her2+ but was routinely tested as long as go as 2003.

If you have the energy then campaign and complain. I’m sure one of the charities would help you.

best wishes

Jane

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Hi Deborah
My daughter found out after research when i was told that i was HER2 positive that only 37% of women in england that have breast cancer are tested to see if they are HER2. That is so unbelievable, i was only told to ask for the test by a friend in another county , in fact she insisted that i had the test , she also has breat cancer but is not HER2.
That 37% haunts me i am so pleased you have highlighted it.
Good luck and best wishes
Kate xxxxxx

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Hi,

Do you know what makes someone high risk for HER2 + breast cancer ? , i tested HER2 +, pogesterone neg / oestrogen neg, out of the 3 i was expecting to be oestrogen poss as i had been on hrt oestrogen only patches for 6yrs prior to dx, thank goodness you changed hospitals and got tested as you say it changes your treatment plan due to the tumors agressive nature and the sooner we start our treatment the better, i have learned alot since my dx ( a lot of my knowledge from this brill site ) but at the time i was tested i did’nt know about the different types of cancers ( after all THEY are the experts not us, we put our trust in them!! ) so i would’nt have questioned not being tested for HER2, thankfully my hospital obviously follows the guidelines and good on you for posting this very important advice, do you think its worth posting your info on the " have i got bc " or " newly diagnosed " categories so that women new to bc will see it an will be able to act accordingly if need be, hopefully these hospitals are few and far between…

LOTS OF LOVE MIZZY xxxxxxxxxxxxx

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I suspect that ‘high risk’ translates as patients who would be likely to be prescribed Herceptin - which might be restricted to those with lymph node involvement and might have upper age parameters. But I’m only guessing.

However, this is certainly not the case at Treliske where I’m now being treated. They’re willing to give me Herceptin even though I have no lymph node involvement.

I had my first round of chemo 2 weeks ago and was wiped out for the first few days but I’m up and about now. I am determined to put this issue into the public domain as I don’t want to see other women’s lives being put at risk.If the 37% figure that Kate mentioned is still true then that’s truly appalling. I’ve contacted Breakthrough Breast Cancer, my local MP Julia Goldsworthy, the health editor of The Guardian newspaper, local papers in Cornwall and Devon and BBC radio 4’s Woman’s Hour. I’ve also posted my message on BCpals.

I will also post my message on the other categories, as you suggested Mizzy.

Best

Deborah

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I was told I was Her2+ and would be having Herceptin back in December 2006, this was a week after my first cycle of FEC chemo. Had it not been available I would have asked if I could pay, I would have found the means by hook or by crook. I had one lymph node involved from 22 removed. I spoke to a friend who is an oncology professor and he told me when Herceptin was only being used for ladies with advanced BC you had to have 10 nodes involved before you could get it. I was under the impression that all women were now tested for Her2 status as part of their diagnosis. It certainly reads like that on a lot of the other cancer sites around and I am sure I read this on the NICE site recently.

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Are there guidelines on basic testing for DCIS ?

I’ve been waiting to discover if I’m er +ve or er -ve since my core biopsy in August so that I can make an informed choice with regard to taking Tamoxifen. (I’ve been taking it since October)

People at both local hospitals have chased the results on many occasions but I have finally been told that they don’t routinely test DCIS.

Am I missing something ? Is it likely that they did the test but subsequently lost the results?

How can people make an informed decision if there is no information???

Maddy x

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Hi Girls

Maddy - I had DCIS last July and was tested for hormone receptors - actually negative - they should test DCIS so push for an answer.

Mizzy - I would also like to know what makes you HER2 positive - I am also er and pr positive and was 34 when first diagnosed.

Deborah - glad you changed hospitals and are now getting Herceptin. Wish I had known my HER status when originally diagnosed(Sep 03). Keep campaining- postcode lottery a nightmare.

As for HER2 - i was originally diag in Sep 03 and wasn’t tested - had DCIS back in July 07 and could have gone on a trial for tykerb (TEACH trial) - just got results back and am HER2 positive. Now told not eligble for trial so what do I do now? Can’t have Herceptin as too late - chemo finished March 04 and DCIS doesn’t qualify for anything. Anybody know if it would be worth paying for Herceptin myself now? Had invasive lump with 1 node affected in Sep 03 and high grade DCIS in Jul 07 - had 6 x fec, 4 weeks rads, ovaries removed and on exemastane. Had one mastectomy and other one booked for March.

Any info or ideas welcome

Sarah x x x

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I was urgently tested for primary in DEC 2005 due to high lymph node involvement 15/20 level 3 and very quick growing lump measuring 8cm, it was roughly around this time that views were changing on primary V mets and I actually got both herceptin and taxotere 6 months before NICE approval on the NHS from a HA notorious for their under funding. Infact my onc still likes to remind me that I am her first and the county to get both drugs for primary and not on a trial. I thought from her wording and other info I have read that all breast cancer tumours were to be tested these days, hence why test results now take so long as opposed to testing high risk only. Also know I have read some where on this site that % HER2 figures may have fallen from the original 20% due to more tumours now being tested, this also rang true with chemo ward and comments from my GP as when I was diagnosed as HER+++ I was moved to main county hospital 25 miles away from local hospital 2 miles who were preparing themselves for the big rush, it was more cost effective for all her2 patients under one roof to share bagged drugs and 1 nurse who had been taken on especially but I was told on several occassions it wasn’t half as busy as what they had expected even towards the end of my treatment I was only joined by another 2 ladies.

The trouble with post codes is funding not the spending, my HA were slated as the lowest spending per cancer patient in a recent national press survey (Oxfordshire)yet have been proven to be the most cost effective HA, yes they came through for me but I know the staff get frustrated in all areas. Its all crap and unfair politics, you dont always get what you put in.

Debbie

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Although my tumour was hormone neg and very aggressive I wasnt tested for HER in Jan '04 when I had my op.On finishing chemo I asked my BC nurse if I was HER+ and was told I wasnt.I only found out when it was too late to benefit from Herceptin that I hadnt been tested! It was only then that I was offered a FISH test which turned out to be HER negitive!

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I am based in Scotland and as far as I understand it, the HER2 test is standard. It was routinely included in all my other path tests and I got the results a week after my mastectomy (I tested her2+). I was told that Herceptin was given to all HER+ cases in scotland as a matter of standard practice - though it was indicated to me that had I been South of the Border it may well have been a different story?

Not sure if this is true or not - though I do know it is more of a postcode lottery down south

Margaret

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Hi Deborah,
how wonderful to find someone down here in Cornwall - thought I must be the only person on this site in this remote area (south east Cornwall, “the forgotten corner” on the Rame peninsular).

I too, was and still am, being treated at Derriford, which in itself is interesting as I had my 3 yrly mammos at a travelling van in Torpoint, results sent to Treliske. I had a non palpable tumour so had no reason to suspect anything was wrong. That was in Nov 2002. Dec 28th I got a letter from Treliske saying they were recalling me to Derriford - the travelling time, by land and sea to Derriford is no different to by land to Treliske, but as I was already being treated at Derriford for Crohn’s, assumed this was why. Since found out that my local hairdresser was also sent to Derriford for bc treatment, same surgeon.

HER2 - what a minefield!! I had a 2 cm invasive ductal tumour, plus intermediate DCIS, and at WLE and sample nodes, had 3/8+ nodes. Had total axillary removal, another node positive, so it was stage and grade 2.

I had a brilliant surgeon, Mr. W, whom I still see, but an obnoxious Oncologist, Dr. K whom I refused to see after two agonising consultations which left me in tears as he refused to discuss my concurrent Crohn’s and how we would deal with a flare. At no time did he, nor the next Onc, Dr. T (now retired) ever mention HER2 to me. I was ER+, PR not done (another problem at Derriford, although I don’t know if the PR status is important.) I only found out about HER2 through this site. 18 months ago I wrote to the 2nd Onc (who discharged me after chemo and rads, so I only had an annual review with the surgeon) asking for an HER2 test and was told it could only be done privately. I went to see him at the Nuffield Hospital, next to Derriford. Think it cost me £120 for the consultation and £75 for the test (which ironically, was done at Treliske). He gave me a long lecture, saying that even if I tested + he would not under any circumstances, even privately, prescribe Herceptin, as it could only be done in conjunction with chemo, or within 1 yr, and I was too far out from finishing chemo. I still insisted I wanted the test done for my own peace of mind. It took about 6 weeks to get the results, only by my prompting, and thankfully I was negative. He did say that my prognosis was the best, ER+, HER2-, which was of some solace.

High Risk? I had lymph node involvement (4/18+) and was 58 yrs at dx, but my prognosis was good, being ER+ (so tamoxifen for 2 months then inexplicably transferred to Arimidex). My last Onc said being ER- and Her2+ was not so good. Just his opinion - other Onc’s may have different ones.

I was dx in Jan 2003, and I truly thought every early stage bc patients are now being tested for HER2. I am appalled they are not. My bc nurse, Jacky (also just retired - am I scaring them away?) told me that Derriford was then one of only 6 breast care centres of excellence in England and I was thrilled that living in such a remote area, I was having the very best of treatment. We were prepared to sell our home and move to London for treatment at the Royal Marsden, if we hadn’'t felt confident in Derriford.

I am intrigued as to how/why you transferred from Derriford to Treliske. I have just had my 5 yrly review with the bc surgeon, and because of complications with Arimidex side effects, osteopinic with bone loss, 2 fractures in my feet last year, and 30+ years of steroids, he has referred me to a Professor of Endocrinology, Prof. Wilkin, at Derriford (see him 25th Feb), for a second opinion as to whether I should continue with Arimidex, which I have been on for 4 yrs. The bc surgeon wants me to continue because of the lymph node spread, and I also guess, the fact my father died of colon cancer at 59 yrs, my twin brother of brain cancer at 50 yrs, so there is a genetic problem, and high risk of colon cancer with the Crohn’s, and I figure I need all the help I can get. If the Professor won’t agree to continue to prescribe Arimidex, I will get it from the US or Canada, where I have good friends. They come to visit us each year, so can each bring 6 months supply. As far as I know, Arimidex is not a class A controlled drug, so feel confident they will not be at criminal risk. Gosh, what lengths we have to go to sometimes.

I don’t obviously know which Oncologist you saw, but if it was the same one I initially saw, I can understand his patronising reaction. In retrospect, I should have made an official complaint as to his attitude and refusal to get peer opinions from either an Oncologist or Gastroenterologist who had treated a patient with two concurrent diseases. My gastro had not treated a patient with bc and said he had to be guided by the Oncologist. The Onc treated me as if Crohn’s was like an earache!
I ended up as an in-patient with a severe rectal haemorrhage, but could not be treated properly until I finished FEC chemo and could resume my normal weekly chemo injections of methotrexate. The whole experience was a nightmare. I lived on hospital prescribed Fortijuice for 4 months and lost 2 stones. I still don’t know whether to make a retrospective complaint, so that other paitents with whatever other concurrent diseases besides bc they have, should not have to suffer like I did. Unfortunately I didn’t feel strong enough, either physically or mentally, at that time, to undertake such action. I am now ashamed at my temerity. Someone has to “step up to the plate” as my American friends say, but when you have just had a cancer diagnosis and also dealing with another serious disease, it is not easy to be proactive.

Wish I knew how to PM you and possibly meet up locally.

Take care, and hope your treatment goes well.

love and hugs,
Liz.

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For Maddy

The trouble with testing DCIS is that it often proves positive for HER2 anyway, particularly the high grade stuff.

Mcgle

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For Maddy and Mcgle

I had DCIS high grade had mast and recon Dec 2007 and was told that due to the mast they dont test for HER2 so as Mcgle says high grade DCIS often proves positive then should I push to be tested. I am not getting rads or chemo, all lymphs were clear, hormone neg and had 1mm clear margin to the front and 2mm clear to the chest wall. Also started menopause at 38 and am now 47. Any advice much appreciated.

luvnhugsCarolexxx

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Not sure whether high grade DCIS testing positive for HER2 would be of any advantage to you at this stage, Carole.

I actually had a tiny invasive HER2+ tumour amongst the DCIS, but even then I seem to be an anomaly being weakly positive, but strongly ER+ and PR+.

Suggest you look at Susan Love’s site for more info.

Mcgle

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hi all
i am strongly h2+. I too had DCIS [developed in 18mths between mamos -family history] age 57 had wide excision…dx cancer h2+ /05 chemo/bilateral mastectomies 06
1/21 lymph nodes still had cancer/15 rads… dx liver mets 06.My sister had DCIS and bilateral mastectomies @ 45 [12mthly mamos]
in 2000started herceptin during rads
when we went to see geneticist again said they Christie M/C] didn’t test DCIS but probably h2+ as stage III
Feel confused I do and I’m a nurse not this area though What my sister and I did learn is that in our family DCIS is not non urgent as six months is the difference between living and dieing [but not yet!!!]
positive point I’m on a drug trial - omnitarg with herceptin which together have reduced tumours 30% and I am now stable omnitarg is similar to herceptin so watch out for it in the future if you can get it !!! x Jan

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Is the 37% figure recent?

If so, this is outrageous given how much it costs to treat someone who develops secondaries. The results still seem to show that herceptin given at the same time as a taxane reduces recurrence by 50% (by itself after chemo is 38%).

The trial results came out May 2004, so if you were diagnosed before then you wouldn’t have had the test. The good news is that a paper presented at the San Antonio Breast Cancer symposium suggested that her2 positive cancers overwhelmingly tend to come back in the first 38 months.

Many trusts were starting to offer herceptin in January 2005, but NICE took until the middle of the year to recommend it.

Unfortunately, NICE only recommends. It is not binding.

Her2 testing matters not just for herceptin but also for whether to use chemo and what chemo to use. There is a growing literature suggesting that her2 benefits more than other breast cancers from anthracyclines (such as FEC) and taxanes. In fact, ER+ patients seem to only benefit from taxanes if they are her2+.

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Hi Christine - that is so reassuring to hear as I was diag Sep 03 and am her2+++ but only found out this week and at present can’t get herceptin or anything on trial. I didn’t have herceptin but did have FEC and am er+ and pr+ - also I am now 4 and half years post original diag with only DCIS coming back last summer but all other scans clear - so lets hope 38 months is a magic time marker for me and others like me!!

Thanks for your info

Sarah x x x

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Thanks to all of you who replied. Sorry I haven’t responded sooner but I’m mid chemo and have been feeling rotten.

Since I last posted I’ve been to see my MP Julia Goldsworthy who gave me a very sympathetic hearing. She says that she’s going to write to Derriford and ask them why they’re ignoring the NICE guidelines on HER2 testing. She also says that she’ll ask a question on the House of Commons to try and find the extent to which other hospitals might be ignoring the guidelines. I’ve also got my local paper interested in running a story.

I believe that all hospitals should follow the guidelines and test the HER2 status of women with primary breast cancer. It should not be a postcode lottery. And we should not have to pay for the test ourselves. We also should not have to research and find out abut the test for ourselves. We should be presented with the all the relevant information.

Deborah