Path report – Her2+ – please help!
Path report – Her2+ – please help! Thought it was too good to be true¦
Have just received my path report. Until this arrived, I believed my prognosis was good (small tumour, clear margins, no lymph node involvement or vascular invasion.) Now I’m not so sure as finally know that I am HER2+ (scored 2+ on the IHC test and tested positive on the FISH test.) Actually, ‘FISH yielded amplification 2.71.’ Does anyone know what this means?
I now know that my DCIS was high grade, which is why a grade 2 tumour escaped. But I truly was not expecting to be in any way positive for HER2.
Am strongly positive for ER (8/8) but weaker for PR (6/8), so should be receptive to tamoxifen. However, I have read that being HER2+ might lessen the effectiveness of this drug, so am worried about this, too.
In addition, I was not prescribed chemo, just radiotherapy, so would not have been a candidate for herceptin, even if it was available for early stage bc. And is the cancer more likely to come back being HER2+?
Am feeling quite tearful and confused as I type this, but realise I should not be such a wimp in view of what so many of you lovely people are going through/have gone through.
Can anyone offer any advice? Not going to see my onc till the middle of May, so am in ‘Limboland’ once again, and the emotional rollercoaster ride continues¦
Thanks for reading this.
Mcgle
PS I see that some of you ladies post as being HER+++. Don’t quite understand what the pluses mean. I thought you were either positive or negative.
Hi Mcgle Hi
I was diagnosed Jan 2005, Grade 2, clear lymph nodes, 16-18mm tumour ER+. Radiotherapy but no chemo. Finally persuaded my oncologist in October 2005 to do HER test. It came back IHC3+ but it also turned out that the hospital I was under for radiotherapy had done HER test and it had come back IHC1+. Won’t go into the details now but I am open-minded as to whether or not I am HER positive or negative. What I did learn was that because I had not had chemo I could not have Herceptin - I have just had to accept that my initial diagnosis was before the HERA trial and I had appropriate treatment for the knowledge that was about them.
I don’t know when you had surgery - I was told last year that you should have chemotherapy within 6 weeks of surgery and then Herceptin within 6 months of that. I was way way over the 6 week mark! If you are not then it might be worth insisting on an earlier appointment with your oncologist and talking through your options re chemo. HER2 positive cancer is more aggressive and unfortunately more likely to recur so you may want to consider chemo and Herceptin.
I too have read up about the effectiveness of tamoxifen in HER2 positive cancers. There does seem to be a question mark over it but I personally feel happier taking something - especially as I am not 100% sure of my HER2 status.
You say that your tumour is small. I think the HERA trial for clear lymph nodes was for tumours over 1 cm - so if yours is smaller it might not be worth going down the chemo route as you probably won’t meet the criteria for Herceptin.
IHC3+ is sometimes written HER2+++, similary IHC2+ can be written HER2++ - does cause a bit of confusion as some people write HER2+ just to mean tested positive for HER2 regardless of IHC score - hope that makes sense.
I am not at all surprised that you are feeling tearful and confused. I dissolved into a complete wreck when I got my HER2 report in the post. I feel if I was diagnosed now then I would have been treated differently - ie chemo and then Herceptin - but I wasn’t, I was diagnosed a year ago and before the HERA trial.
I would suggest that you demand to see your oncologist as soon as possible to discuss if your options have changed re HER2. Don’t wait until May because IF you do need chemo to get Herceptin it will be getting too late to do it.
I hope I haven’t unduly worried you but I felt it was important to tell you my understanding of things. I could be wrong - but please discuss it with your oncologist and get your mind set at rest. BC is a horrible disease, as you rightly say an emotional rollercoaster and it is important to do anything we can to keep the ride as smooth as possible.
All the best
Love
bjj xx
But this is a little snippet from a site that I found:
0–1+ means that a normal amount of the HER2 protein is present and the result is HER2-negative
2+ means that a moderate amount of the HER2 protein is present
3+ means that there is a higher than normal level of HER2 protein and the result is HER2-positive
Thought it might be useful for some of the queries that keep arising on this.
Dawn
For bjj Thank you so much for your informative reply.
How confusing to have two quite different IHC results! Would you not now like to discover your FISH status? I think you would be entitled to know it.
I knew that chemo and herceptin went hand in hand, but I was not recommended for the former because of the size of the tumour (about 1cm), and all the other factors I initially wrote about. Also, I am quite old (52) and postmenopausal by four years.
My op (a quadrantectomy) took place in November 2005, so I would be way past the time for chemo – not that I would have wanted it! In any case, don’t think I would have been eligible for herceptin anyway.
I am going to ring my onc on Monday to get an explanation of my HER2 result – can’t possibly be expected to wait till mid May to discuss this! Also, I need to know whether I should switch to arimidex at this stage, though I am getting on very well with tamoxifen.
Your explanation about the symbols for IHC and HER made perfect sense.
It was good of you to give me your understanding of HER2.
All the best
Mcgle
For Dawn Thank you for your little snippet, Dawn.
Having read some of your posts, I really admire your tenacity in coping with all those different treatments through the years - another very brave lady!
All the best
Mcgle
Hi Mcgle Hi
I am pleased that your found my posting a bit helpful.
AS for my IHC results - one was done at my local hospital and one was done at the Marsden. The Marsden gave me the IHC1+ result. They did do a FISH test on it and it still came back negative - but I am not sure if they did the FISH test on the original sample they had or whether they requested a new one. They were fairly convinced they were right as they are THE MARSDEN but my oncologist did say that in exceptionally (very apparently) circumstances part of the tumour can be positive and part negative. The local hospital that got the IHC3+ result is apparently a “centre of excellence” and a testing centre where they double check conflicting results/difficult samples as they are so good! I am just open-minded about it - it won’t affect my treatment so I try not to lose any (or not too much!) sleep over it. My triple assessment said my lump was benign (it wasn’t) and that is supposed to be 99.6% accurate so my faith in tests in not exactly great!
It sounds to me that you are past the time for chemo but a friend of mine in Holland was diagnosed in August, had radiotherapy first and has only just started chemo - they seem to do it the other way round there - I would love to know why.
As your tumour was about 1cm I think you may not have quite met the criteria for Herceptin - I think it is supposed to be over 1 cm - you’re pretty close.
I couldn’t switch to Arimidex because I am pre-menopausal but as you are post-menopausal you could. There is a question mark as to the effectiveness of tamoxifen with HER2. Arimidex costs more than tamoxifen - £1000- a year as opposed to £30 so be prepared to stamp your feet!
All the best
BJJ
For BJJ again Hi
I’m not at all surprised that your faith in tests is somewhat jaded given your conflicting results.
Actually, I spoke to my onc today and he, too, was surprised at the HER+ result, given all the other good prognostic indicators. He is going to consult with his colleagues about my particular situation, as it is unusual. So at least that is a step forward.
He couldn’t actually comment on the score, as that is not his field - all he needs to know is whether it is positive or negative.
I have asked for the test to be re-done and he is going to find out whether this is possible - all boils down to money, I suppose.
Re the arimidex. He said to keep on taking the tamoxifen until he had further researched this.
The waiting continues…
Best wishes
Mcgle
Tamoxifen or AI in HER2 + BC Quick answer (I’ll try and find ref later ) google Tamoxifen Dr Jeckyll Mr hyde. Prof Smith made a comment on this subject in one of the recent ABC of Breast disorders series - January issues of the BMJ
I refused to take Tamoxifen (think about 10% of HER2+ are Oest + as well) when herceptin finished (I had to have an oophorectomy to allow me to do this
For sip11 Thanks for your reply.
Until the multidisciplinary team have met to discuss my unusual case, I am going to keep on taking the tamox, though my mind is in a whirl. Don’t really fancy arimidex with all its unpleasant side effects, but I may well have change in the near future.
Poor you having to have an oophorectomy, but that must have been an informed decision.
All the best
Mcgle
Hi Mcgle
My local oncologist was surprised at my positive HER2 result too. She had told me that it would be extremely unlikely that it would be positive. Both my local oncologist and the one that I had at the Marsden kept telling me my cancer was a “good” cancer - strange word as “good” and “cancer” don’t seem to go together in my opinion!
When I got my positive HER2 result I went to see my local oncologist - I was completely stressed out, couldn’t understand why she had said in her letter to me telling me the result that I couldn’t have Herceptin and I was in quite a state when I finally got to see her. My criteria met the criteria for the HERA trial and I do wonder that if I was diagnosed now then I would possibly be more of a candidate for Herceptin (I’m ignoring the negative result here!). I did understand though that I couldn’t now have Herceptin because I hadn’t had chemo. I’d had a couple of slightly less than satisfactory meetings with my local oncologist - she didn’t seem to answer any of my questions and I felt my fears were too easily dismissed. At the HER2 appointment I had I slightly lost it, I was both angry and upset with her - believe me it showed! When it had sunk in when I got home, I wrote and apologised to her and tried to explain that I am the kind of person that needs to know things - good or bad. I am so pleased that I did this. She phoned me at home to discuss things, she said how she pleased she was that I had written and that there was no need to apologise - she was just concerned for my distress. We now have an excellent relationship - both much more on the same wavelength. She went to the San Antonio Breast Cancer Conference at the end of last year and made a point of taking my case notes with her - she knew that amongst other things I was concerned about taking tamoxifen and whether or not it would help. She very kindly phoned me up when she got back and we had a very long chat. She had spoken to a lot of people regarding my situation - the general view was that I was right that I could have an oophrectomy and go on Arimidex but my risk was low anyway and that it was a lot to put myself through for a such a small benefit. She explained about the problems of going into an immediate menopause/quality of life etc etc. I do believe that she went to a lot of trouble for me to ask various “experts” as to what to do. She also made a point about asking about me having Hercepin without chemo and so far down the line - the opinion was that they don’t know what if any benefit it will be. I don’t think anybody really knows but I do feel reasonably at peace that I had the right treatment at the right time for what knowledge was about. I don’t know if this helps you at all.
There is an amercian web site her2support.org/ - I think they had a thread a while ago about FISH scores. I think yours is relatively low. It’s another good and friendly site and I am sure if you put a posting up someone might be able to help you.
Love
bjj xx
For BJJ once more Hi again
How similar our cases are! At least in terms of the question mark hovering over our HER2 status! My cancer was described as well-behaved (grade 2), not aggressive.
Like you, I need to know everything, even if it means bad news.
However, I had some good news yesterday. Realising how distraught I was about the positive result, my onc has consulted with an expert in this field and things do not seem nearly so bad now. The benefit of herceptin for me would be negligible, so he would not be recommending it. I have to say that I am relieved at this, as I didn’t fancy having all those infusions, but would have done so had it been necessary. He also re-evaluated my survival odds and there has only been a minor change here. And let’s face it, life is a gamble anyway.
I think it was really good of him to go out of his way to get me this information, especially with Easter looming. Like you, I now need to just accept my situation and get on with life. But it is good to know when we are distressed by news like this, that our concerns are taken seriously. And oncs, surgeons, nurses are only human after all, and must be used to reactions like ours.
Thanks also for that link. Like you thought, my level of amplification seems to be relatively low. Apparently, the path people will be ringing me to explain this in due course. You can’t ask fairer than that.
So really, I think I have been treated very well and pretty quickly.
Perhaps I can now relax a bit!
Happy Easter!
Mcgle