Has anyone else been told that their tumour was not tested for HER2 status as they wouldn’t be a candidate for it, therefore there was no point in doing the test.I thought all tumours were tested and assumed I would be told this result with the other results after the mastectomy.
Seren
Hi Serendipity
I was tested before my mastectomy, i knew nothing about Her 2 but my partners step neice who was diagnosed down in Surrey i live in Northamptonshire, told me to ask for it. You must be tested i have written about this before, my daughter did some researching about this and only 37% of women who have breast cancer apparently are tested to see if they are HER 2 positivie is that disgusting or what .Apparently it is because the cost to provide Hercepton is almost 50k for the course.So please make sure you are tested and please get back to me.
Today i have had my first T-axatare yesterday had a real implode day cryed all day really terrified thought i was taking myself to my own execution. But everything went so well, just so relieved. Still really high on steroids but i can live with that.
Love and Best wishes
Kate xx
Dear Kate
Thanks for sparing the time to respond to my post on what must have been an anxious day for you - I am so glad the experience wasn’t quite as bad as you had imagined and wish you well for the rest of your treatment.
I always feel better knowing what is going to happen, even if it’s not pleasant, so I am prepared mentally. I think this is why I am concerned about not being tested for HER2 - there will always be a nagging worry about this ‘gap’ in my pathology results even if there is nothing I can do about it now.
The figures you mention are shocking if it is purely only down to funding. I do think that I didn’t know what questions to ask at dx and it’s only later that I am realising this and how it is adding to the stress of the whole experience. I wish I had known about this site much earlier.
My very best wishes
Love Seren XX
Dear Seren
Please let me know when you have asked it will worry me until you have been tested. I would never have known can you imagine that ?
Now I have done a lot of investigating on Herceptin i would have felt very vulnerable and in a very precarious position .(Tamoxofin will not help if you are HER2 positive)). I cannot remember the percentages but it is very high that secondary cancer can occur if you are HER2 positive and do not have Herceptin.
Please let me know when you have the answer
Lots of love and good wishes
Kate x
Hello Serendipity
Did they tell you why you wouldn’t be a candidate for Herceptin? Have you had chemo? I’m asking because I believe you can have Herceptin only if you’ve had chemo, so if they knew that you weren’t going to be offered chemo - perhaps that was the reason.
It’s not necessarily too late. I believe they keep all the tissue samples for some time so there’s a chance that you could still have the test for HER2+.
Best wishes
Anthi x
Seren,
I was told recently that hospitals have to keep any biopsy tissue, or any tissue that has been removed to test, for some ridiculous length of time, so you can ask for the test to be done even now. I asked about this as my HER2 test was not done on original biopsy, and I have had chemo before surgery, during which the tumour disappeared. I was worried there would not be anything to test, but have been told they will still have my biopsy tissue to test. (Although was told this in Dec, and still waiting!!!)
Best of luck, hope you can have a retrospective test.
Shannon
x
I was dx in 2003 and not tested for HER2neu. 2 yrs ago I decided to write to my Onc ( he discharged me after chemo and rads in 2004, so only have annual check up with bc surgeon, but he is on the ball.) Onc wrote back to say HER2 was only tested when I was dx if it was a recurrence?!! He has since written to say that all bc patients are now tested for HER2 at my hospital, but there has been a post here from a lady who was treated at the same hospital as me, had mastectomy October 2007, and she was not tested. She has transferred to another hospital in the South West, has been tested and is +.
Onc said I could be tested privately, which I decided to do. I saw him at the Nuffield, an hour consultation, think it cost £125, then £25 for the actual test. However, during the consultation he told me that even if I was HER2+ (thankfully I was -) he would not prescribe Herceptin as I was too long out of chemo (FEC). He said that Herceptin is only given within a year of having chemo, and is best done concurrently. I’m not entirely sure he is right, but could hardly argue with him. As it turns out, I don’t need it anyway, but would have felt aggrieved if I had been +.
Liz.
Thankyou to everyone for the advice- I feel in a very ‘lonely place’ at the moment so it is comforting to know you all cared to reply.
I was told three weeks after mastectomy and node sampling on results day, that I wouldn’t be a candidate due to my pre-existing cardiac problems when I asked about my Her2 status.
I am aware that Herceptin can affect heart function, but I feel that the decision not to test at the time of surgery when the grade and stage were unknown, without informing me, took away any control I may or may not have had over treatment decisions and how they might affect my future.
I can’t help but feel I was ‘written off’ with regard to Her2 status the moment my medical history was known.
I may have cardiac problems - which I have to live with - but I feel that shouldn’t exclude me from having the information about my cancer that other patients seem to automatically be told. It certainly adds to my fear of recurrence when I think of the ‘not knowing’.
Thankyou so much for listening
My very best wishes to all
Seren XX
hi Kate
you have really worried me… why do you say tamoxifen doesn’t work with herceptin. please can you explain as i am due to start chemo soon and going to have herceptin and tamoxifen. thanks
Julie
Hi Julie
I know of other women who have tamoxifen and herceptin, so don’t worry. It all depends on your hormone and Her2 status. They are prescribed together if needed.
I just cannot believe that some hospitals are not testing Her2, it should be compulsary and not a lottery.
Best wishes to all
Alison x
Seren
I wasn’t offered a test for HER2 either because I was considered low risk. However, I transferred my oncology to a different hospital and tested positive.
The NICE guidelines say that everyone with primary breast cancer should have their HER2 status checked. My new oncologist believes that even if the hospital wouldn’t intend prescribing Herceptin because it was contraindicated, it’s still worth tested so that they have a full profile of your BC.
I have posted earlier on the issue of rationing HER2 testing and am determined to campaign on this. I’ve been to see my MP Julia Goldsworthy and she’s agreed to take this issue up with the hospital who didn’t test me (Derriford, Plymouth) and she’s going to ask a question in the House of Commons to try and find out the national picture.
I’m sorry to hear you have cardiac problems that would exclude Herceptin. However, there are new drugs being developed all the time. If you go on the Cancer Backup site you can find out of there are any relevant trials.
Best
Deborah
Hi Seren - I was orginally diag in 2003 and wasn’t tested for HER2 - had reoccurrance in 2007 which was DCIS so again not tested as DCIS doesn’t need chemo so I couldn’t have herceptin even if HER2 positive. There is a new drug Tykerb which helps HER2+ve people without afffecting their heart and is in tablet form but at the moment is only being used for secondaries. But there are trials for ladies with primaries - my reserach nurse thought I was eligble for trial so sent off for my original tumour to be tested from 2003 (they have to keep all samples ) and I am HER2+++ - not great news as I didn’t have herceptin in 2003 - then to be told I was not eligible for trial. So I am HER2+++, not had herceptin and can’t have Tykerb also. My research nurse kindly told me ‘Well at least we are offering you a second mastectomy with recon’ - great consolation .
Anyway long and short of my thread is if there is a trial for Tykerb you are eligble for this drug really benefits HER2+ people - this shouldn’t affect your heart. Just consider though how you would feel knowing you are HER2+ and not being able to do anything about it - I feel this should have been thought about more thoroughly for me. Am seeing onc soon to discuss - not impressed with the way the research nurse from Guys dealt with me at all - and told all of this info, results as well,over the phone!!!
Take care
Sarah x x x