Hiya, has anyone been referred for the FISH test and heard that they are HER2 negative at all? I gather I’m borderline and am awaiting the outcome of the test. Just as I thought I was nearing the end of the treatment - or, the chemo, at least. I’m now worried that I’ve got another year of needles and IV injections to look forward to once the chemo as finished, as well as 5 years of hormonal therapy.
Please tell me that there is someone out there that has been borderline but has not needed herceptin after all!
As an afterthought, perhaps I just need to come to terms with the possibility that I might need herceptin, just as I needed to come to terms with having to have chemo. After all, it is very effective and if I’m borderline perhaps I would benefit from having it than not irrespective of whether or not I was positive. I am now thinking that I want it even if I am negative.
I was still borderline for herceptin, after both tests had been done. My onc dithered for ages, but finally said I would get herceptin as there was some evidence to show that it was still beneficial even if you were borderline. It is a pain having to carry on with treatment for another year, trying to find veins when they are messed up from the chemo, and not being able to move on mentally, but I keep on telling myself it must be worth it. At least I will have done everything possible to prevent a recurrence.
Thank you, Roadrunner! I was beginning to think that I had asked an unanswerable question and that there was no-one out there who could reassure me. Of course, I’d rather that none of us had to go through this at all but it is a relief to know that I am no alone - sorry, I hope that doesn’t offend.
I know that hereceptin reduces the risk of recurrence by a considerable amount - approx 50% - and perhaps if I’m given the ‘choice’ - or the oncologist has to make a decision if I am still borderline - that I will agree to have it just to make sure that I have done everything that I can to reduce the risk of recurrence/spread.
I’ve noticed that there are several trials too so I may just agree to participate in one of them if necessary.
hi i was borderline as well… i was offered chemo as extra insurance. i needed to have chemo to get herceptin. onc said up to me. i am 49 and she said if i was 50 and over wouldn’t offer it and if i was 40 she would tell me to have it. imagine knowing this and making a decision… it only improved my chance of 2 percent of it not coming back so i also had to weigh up the effect on body. i was told as long as had 4 chemo i could have herceptin. i also need tamoxifen for 5 years. i went ahead and had chemo only did 4 as reacted badly to 3 and 4 sick the whole time except for a few days. i am due to start herceptin soon not got a date yet. heart scan 1st july and onc apt 11th July. when a date will be given. i have to try everything i am offered but i wont make myself ill so i aim to do it all but stop if need to… i have also been asked to do herceptin trial i am not sure what i think. have you any views on it. i have posted a couple of threads but no one seems to know about it let alone doing it… i wanted to find out why people deciding not to do it as this would help…me make my mind up. take care
julie.
I know of 2 people who were initially told they were HER2 and then when they finished chemo told they were not and wouldnt be getting Herceptin.
It does happen. I dont know how because as everyone says you have to have chemo in order to get Herceptin so seems unfair for maybe some people to be having chemo unless they absolutely need it.
I have been told i am HER2 and will be getting Herceptin with the first taxotere. I was also told i would need chemo as it was in the lymph nodes to which I replied well I would have needed chemo being HER2 wouldnt I. No comment.
Hi Naz,
Have only just seen your thread. Please can you tell me what FISH means/stands for as I haven’t heard of it before?
My onc just said I would be having Herceptin as I am HER2+.
I know it sounds a bit naive, but I never thought to question it and didn’t know there were different percentages of being positive ; I just thought you were negative or positive.
Am not due to see any of the professionals for a couple of weeks until I begin radiotherapy. No one has mentioned the FISH test. Do you have to ask for it? or was it suggested to you?
Hope you don’t mind me asking,
love
kay.
Here is a link to the cancer backup site that explains the testing. Scroll down to the HER2 Testing section, and you will see that the FISH test is an extra test that is needed if the result is not a definite yes or no after the first test. I presume you were a definite yes after the first test, so the FISH test was not needed.
This is the first I have heard about this… I was in the middle so they tested again and said I don’t need herceptin, I am a bit worried that i did now.
It sounds as if you were a possible herceptin after the first test, but the second test answer was a no. If the second test was a ‘no’, there is no point in you having herceptin as it would give you no benefit. It only works if you are her2+. Don’t feel you are missing out here. Her2+ cancers are more aggressive than her2- cancers; without herceptin the prognosis would be worse, but taking herceptin makes the prognosis much the same as someone who is her2-.