Sorry to sound so ignorant, but I’m still awaiting my results for HER2 and am starting to get the feeling that being HER2+ is a bad thing? Can anyone explain exactly why this is, and also how much worse the prognosis is than being HER2-?
Caro x
You might get subjective opinions here, suggest you Google and have a read around some of the sites where they will have chapter and verse in a form developed for patient consumption.
Dr. Susan Love’s Breast Book would also be helpful for that and all other such matters.
Hi Caro,
I her2+++ is bad because it is a very aggressive form of breast cancer. I am not going to get into all the technical detail of that but up till a few years ago her2 hadn’t been discovered. I was dx 19 years ago before it was known and my cons. is fairly certain that first dx would have been her2 if the knowledge had been there. I have had several new primaries & recurrences over the years and it wasn’t until I had run out of all chemo options and was dx with bone mets that my onc checked out the last surgery to find that it had been tested for her2 and was positive. Sadly herceptin doesn’t work for everyone who is found to he her2+ but I think it is making a huge difference to my life (and the length of it 
and to many others.
Sorry strayed a bit from your original question as to why her2+ is a bad thing. It is becoming less of a bad thing because of herceptin.
Dawn
xx
Hi Caro
In a nutshell, my onc said to me that if you’ve got a primary diagnosis then it’s worse if it’s HER2+ because yes that means the cancer is more aggressive. However, when I was diagnosed with secondaries he said that it is better at that stage to be HER2+ because then you have more/better (?) treatment options. Anyway, thankfully (?!) I’m HER2+ and so far Herceptin has been working for me.
Alison x
One of my Onc’s told me that these days with HER2 type cancer, because of the treatment with Herceptin it makes it “no worse” than Hormone positive cancers.
If you look on the HER 2 support site, the American ladies seem to say their Dr’s think having Herceptin is better odds these days, so its not all grim news.
I would watch out for google searches, because much of the material is outdated and might be unintentionally scary. The latest results of the trial of herceptin after chemo (March 2009) indicate that 79% of women who received herceptin had no evidence of recurrence at four years followup, as did 73% of women who did not receive the drug.
I agree with the google searches. There is a lot of out of date material on there. The 79% and 73% seems to fit in with what I have read. My onc said it made only a 7% difference to me. I guess the above figures make that about right. However a chemo nurse at the hospital said MOST patients having herceptin go on to need further treatment. Secondaries I guess. She really cheered me up. That was this last christmas and I have been down ever since. They need to get their act together. And be positive. Afterall they tell us to be. I have a dilemma at the moment in that my veins have all packed up. I have had 13 doses, 2 with taxotere. I am tempted not to have the last 4 if it makes so little difference. What would you do. I was Grade 2 with 6/21 lymph nodes involved. I must admit these last few, as I think you said previously are proving very tough. I seem to feel tired and washed out a lot of the time now. Is that normal. Would love to hear your views.
I was lucky in that most of the staff I dealt with were really good, but I met a lady whose radiotherapy Consultant said to her at her follow up post rads “I’ll be seeing you again anyway, because this one usually comes back within a couple of years”. She was in floods when she left the hospital and the person who was accompanying her made a complaint about it.
I was Grade 3 with 1 out of 22 nodes affected and both of the oncologists I was under said they thought if it was to re-emerge it would not be for 10 years. I often wonder how they make their assumptions, everyone seems to get a different tale. I try not to dwell on it and just get on with my life, some days it’s hard, but I don’t see what else I can do.
I think if we are going to get cancer back, then we will - it’s nothing to do with odds or statistics, its just life, what will be will be. I had IBC stage 3, but no node involvement, so does that make me any more likely than a stage 2 with 1 node? I think not really in the broad spectrum of things.
That doesn’t mean I am strictly positive all the time, I worry constantly about every damm ache, pain or spot but none of us know what we have in our future. We have to just HOPE the once is enough for us.
Feeling tired is a common problem with herceptin if you look at the herceptin dot com website I seem to be suffering about 5 of the 13 side effects, but, being given the extra 2 doses (20 instead of 18) I hope this will be enough to keep the cancer at bay for many, many years. Having said that, I will still be pleased when its finished, no more 3 weekly trips to the hospital, 4 hours round trip.
Good luck to everyone and hope the SE are minimal in comparison.
P xx
Hi Starfish,
The actual benefit of a year of herceptin in general may be higher than those figures I gave because once herceptin had been shown to work the drug compnay allowed the women who hadn’t recurred to switch over to get a year or two of herceptin and the higher risk patients lept at the opportunity. What I was hoping that people would get out of it is that the vast majority still had no evidence of disease four years later.
By the way, I was my oncologist’s highest risk her2 positive patient and am still disease free nearly six year after diagnosis. And herceptin is suspected to work even better if given with taxotere, which I also got, but not at the same time as the herceptin. The odds don’t tell you what will happen in any particular case, just what is likely to happen, but that nurse is overly pessimistic and I don’t see how the radiotherapist could be so certain.
Yes, the tiredness is an effect of the herceptin, but it goes away within a few months of finishing.
I finished Herceptin in April of 2008 and was told it keeps working for 6 months or more after you finish the course. I was told the same thing when I finished rads the previous year.
Caro
I actually perform Her2 testing so know reasonable amount about it.
I would agree with others that google can provide you with a wide range of answers that are not always correct or up to date.
It is true that Her2-positive tumours are associated with more aggressive characteristics and a shorter disease-free survival and in times gone by these tumours were difficult to treat. However, the introduction of Herceptin has greatly improved the treatment of these types of breast cancer. Having a Her2-positive tumour now means that the chance of a response to Herceptin therapy is greatly increased, therefore significantly reducing the chance of recurrence and increases disease-free survival.
Hope this makes things a little clearer. x
Hi Scientist
I wonder if you would be able to answer the following for me?
Is HER2 ++ as aggressive as HER2 +++ ?
If you are HER2 ++ and FISH + does that mean its as agressive as HER2 +++ ?
Thanks in advance !
Lolly
I cannot find any evidence relating to the correlation of the exact Her2 status (i.e. 1+ 2+ etc)to prognosis/tumour aggression. Much of the research focuses on prognosis in relation to Her2+ve tumours (i.e. 3+ or amplified with FISH).
With regard to the FISH question, this test doesn’t really offer any prognostic information. It is there purely to decide, in difficult cases, the likelyhood a tumour will respond to adjuvant therapy such as Herceptin.
The important thing to remember is that BC is a multifactorial disease therefore many things can cause tumours to behave in particular ways (e.g. spread, respond to treatment etc). Her2 status is just one of these and only gives clinicians/oncologists more information to make a informed decisions. No two cancers are identical.
Hope this makes sense.
Hello,
We just thought we would join the discussion very briefly to give you a bit of information which you might find useful. There are various ways in which the Her-2 positive status is reported and we would suggest that if you’re feeling confused about your own diagnosis that it might help to get in touch with your cancer specialist or breast care nurse at your hospital.
However, just to explain a little about the actual testing: - there are three main ways that the pathologist can measure your HER-2 levels.
One is called IHC (immunohistochemistry) and this is usually done first. This is reported as a score ranging from 0-3. A score of 0 or1+ is called HER-2 negative and means that the breast cancer doesn’t have high levels of HER-2. A score of 2+ is borderline, and a score of 3+ (HER-2 positive) means high levels of HER-2 have been found.
The other two ways of measuring HER-2 are called FISH (fluorescent in situ hybridization) and CISH (chromogenic in situ hybridization). These are reported as a positive or negative. Breast cancers with borderline IHC (+2) results should be retested with FISH or CISH to confirm if they are truly HER-2 positive.
If you would like to discuss any of this further you are welcome to phone our helpline and speak with one of our nurses or trained helpliners - the freephone number is 0808 800 6000 Monday - Friday 9am-5pm Saturday 9am -2pm.
Kind regards
Nursing Team