Hi, I had chemo today and, after pestering the nurses for the outcome of the HER2 test, discovered today, 6 months later, that the result of the initial test was equivocal and that they are now awaiting the result of the FISH test. I also saw the oncologist today who told me that, while it would be unfortunate if I was HER2 positive, it is more significant that all my lymph nodes - 17 - were clear. I am, though, petrified that this disease is going to recur, and/or spread, and that I will be lucky to make it to my 50th birthday (I am 37). While life can get me down so much sometimes that I occasionally think that I’m not sure I want to live anyway, if this has taught me anything it is that I desperately DO want to live - and I am worried that I’m not going to have that choice. I know that this probably sounds really very self-indulgent but I need some words of encouragement. I would really like to hear from anyone who has had the FISH test and has a negative result. I’m not sure I can cope with 3 weekly injections for the next year when the chemo finishes - as much as I know that I will have to if I want to attack this disease at all. I’ve also been asked to answer a questionnaire on family history etc so that they can do some genetic testing - to which I’ve agreed - but if anyone has any advice comments to give that would be appreciated too.
Please, though, although I would like to hear that I’m going to live until I’m 90, I don’t want any statistics.
Naz, x
Hi Naz
cant give statistics(spelling it is tough) but I hope I can offer support. Try not to panic someone will be along soon with lots of helpful advice.
Love Debsxxx
Thanks, Debs. Just knowing that someone is listening is real support. I know I am over-reacting but it just all gets on top of me sometimes. I mustn’t go on. Sorry. Must look on the bright side. Going to Brighton at the end of June - it’ll be a real treat to be beside the sea - I relocated to the midlands from the south a few years ago and desperately miss the sea breeze. We haven’t been able to have our yearly trip to Polperro this year yet either - which gets me down too.
Spelling is not my strong subject either but definitely don’t want statistics. I know I shouldn’t be afraid of them - especially when I know just how easily they can be manipulated - and how unreliable they are - but, however, unreliable they are, to learn that I’ve only got a 42% chance of being alive in the next 5 - 10 years is just too much for me to hear. Obviously, the statistics are based on past data - and don’t account for individual circumstances - but I just don’t want percentages! My life has got to be worth more than a percentage.
Sorry, I am going on again. Thank you for your support.
x
hi naz… if you spoke to prof grieve then he’s prob asked you to do the same things as me… the blood test and qnnaire because cancer resesearch are testing the theory that there is a mild genetic disposition to cancer which is triggered by environmental/external factors??
as u know i am 50 now, i don’t do stats but prof grieve did say his job was to make sure we die of old age and i don’t think he’d say things like that if he didn’t believe them. Plus… all your nodes were clear which is excellent - article in the Times last week re women diagnosed early with BC have same life expectancy as others. i decided that applied to me even tho one lymph node was affected… hey babe - don’t let the chemo blues get to you - it will be over, you will be ‘normal’ again, Polperro is waiting for you.
take care j x
Thanks, Jen. Yep, that sounds like the questionnaire. It was reassuring to speak to Prof Grieves - I was feeling a bit abandoned. Just the HER2 test getting me down. I understand that the prognosis is poorer if positive. As you say, probably just ‘chemo blues’ - and medicine is advancing all the time - even if the UK doesn’t always keep up with it if only for cost reasons - but so hard to stay ‘high’ all the time.
Yep, Polperro awaits.
x
Hi I am HER2+ and 21 lymph nodes clear-have been told there is a very high chance that it will not return.
Take Care
Mary
xx
Thanks, Mary, that’s really reassuring. I’ve obviously misunderstood. Clearly over-reacting. Just needed some assurance. Should just keep my head down and get on with it. Just got me down today.
x
We all have our down days,we are entitled, it says so in terms and conditions of bc ha ha, you will get through it and feel stronger.i have had 4 herceptin now and not had any reactions, half hour infusion every 3 weeks until April,but hey I am alive.
Take Care and Keep your chin up
Mary
xxxx
Hi Naomifel
I’m HER2+ and 15 nodes clear and I was told that after chemo and herceptin the chance of recurrence is only very very minimally higher than people who haven’t had BC. I also read the article in the news last week about life expectancy, and I fit that bill. I expect to live a long long time - I have a huge family to annoy after all 
Heres to life!
Caron x
Hi, poor you with that going round your head.
we all have our panic moments and different things trigger them, but we are all with you worrying about basically the same thing and understand. No guarantees with any BC dx as far as I can see, you can always be better off or worse off than someone else. When I got in a total flap my research nurse told me that in our area we have someone of 27 with a very aggressive HER2 positive cancer who is doing brilliantly on the treatment and 60 year olds with grade zero that have recurred and so you just can’t make judgements about how the future will pan out.
A little quote from my breast bible (American) that I hope might help you, it is about adding herceptin to chemo regimes following the trial results. ‘the exciting news was that the combination resulted in a 52 % decrease in disease recurrence compared to patients treated with chemotherapy alone. Most of the women in the studies had positive nodes and received AC followed by T as well’ as herceptin.
Hope I managed to say something to help you sleep tonight. Keep believing.
Hugs
Lily x
Hi
so sorry I put a stat in without meaning to, but bear in mind that figure is an extra bonus on top of your usual good chance after chemo
Lily x
Naz… be calm - Prof grieve doesn’t lie.
Thank you, everyone, for your reassurance. I clearly lost it yesterday. Still a bit apprehensive about it all this morning and, unfortunately, I have got back into the habit of reading around BC again, which, after the surgery I was too tired and indifferent to do, has just added to my anxiety.
Lily, no need to apologise for the statistic - I had come accross that one myself - and I know it all depends on what the initial statistic is - but this one is definitely one I like! I should have said I only want statistics that indicate a good outcome! And, yes, we do need to remind ourselves that each one of us is different.
And Caron, I intend to be around a lot longer to annoy my family too - and to treat myself to all those holidays I’ve been imagining I will have once this is all over for many years to come.
Jen, I have absolute faith in Grieve - he is just so approachable - you are right, why would he lie?
I guess I will just have to succumb to these moments of panic and let them recede in their own time.
Thanks again everyone.
Off to do a bit of hoovering now - its about time I at least tried to make an effort with the housework.
Naz, x
Naz,
Don’t worry if you are her2+, if you then have herceptin your prognosis will be no worse than someone who is her2-. Herceptin really is a wonder drug.
Hey Naz - I’m still awaiting the FISH test - my HER2 is 2+ (ie equivocal) - they are looking at the cancer cells at a specific protien and if there are enough receptor sites, the NHS considers that you will benefit re cost effectivness. HOWEVER - my cons onc said to me, very clearly, “I do hope that you get to have herceptin because young women do better with herceptin if HER2+” So it all comes down to cost…
I’m awaiting the FISH then will look at paying for it (though assume v.v. expensive) if not 3+. After further discussion with onc, of course.
Big love Td xxx
Hi, thanks Td. My oncologist didn’t indicate whether or not he thought I would have it anyway but I am certainly coming round to your way of thinking, or, at least, that I want it now anyway, irrespective of the outcome of the FISH test. Definitely won’t be able to pay for it privately - and I gather that the juries still out as to whether or not it would be possible to do so anyway (politics?!) - but certainly thinking that I might argue for it now rather than not.
Thank you again Roadrunner! I should rather be wanting this drug than not given that I’m borderline.
I shall do a little more reading up on this but are there any side effects that might prevent someone from working. I definitely need to get back to full time work sooner than anticipated. I’m also wondering if it would be possible to have the dose at a hospital in London, where I work, rather than having to take a day off sick/holiday once a month (or thereabouts) or go part-time? Any suggestions?
Thanks again
Naz
Hi Naz,
My onc said that women go in for their herceptin treatment in their lunch hours, and that the side effects are minimal. My only reservation is whether I’ll still need the port in and those damned injections I have to have…
There is a thread on the herceptin board about side effects, and it’s different for different people, but it’s certainly not as bad as chemo.
I’m sure you can arrange things so they suit work.
Caron x
Hi Naomifel,
I’m sure it’s unintentional but in referance to one of your earlier posts on this thread, " I understand the prognosis is poorer if positive"
There are many women who use this site who are Her2+ myself included and it just does’nt help to read posts like this.
As I say I’m certain it’s not meant to frighten anyone but it’s quite hard sometimes to read things like “at least i’m not Her2+ thank god!”
Now I’m hoping I have’nt upset you!
Best wishes
Please think about us triple negative girls on here who do not have the benefit of being able to take hormone therapies. We have nothing to take after we do our radiotherapy and sometimes that makes me feel frightened.
BUT - I live for today and cannot let myself worry about the future. What will be will be - we cannot change ANYTHING.
I’m sorry to have upset anyone. It certainly wasn’t intentional. Obviously, it upsets me too. I’ve avoided this site recently because I haven’t always felt that I would get the support I need. And now I fear I have offended other people instead. Can’t win. I’ll just keep my head down and try and get through it on my own.
I’m sorry - I didn’t mean to offend.
Naz