A little bit about me, I was diagnosed in March 2007, had a 13mm grade 2 her2 positive and oestrogen positive ductal cancer with calcification up to 4cm. After sentinel node biopsy showed 4 out of 6 lymph nodes with cancer had a clearance after my mastectomy. No more cancer found but had a nodule on my lung, still do, but it is believed this is a benign thing. Treatment wise Ive had 3 FEC, 3 Taxotere, 25 sessions radiotherapy, 18 Herceptin just finished and am on Tamoxifen.
So, when I saw my onc on the day of my final Herceptin I plucked up the courage to ask about prognosis. I have read so many conflicting things on here and other places about what can be expected. Anyway, I thought some of you might be interested to hear what she had to say. Firstly, using the 10 year survival only she said that 85 out of 100 women who have had roughly the same as me will be alive in 10 years. So then I asked the awkward question about secondaries! Out of those 85 still alive she told me, 25 of them will have secondaries. I was gobsmacked actually. Still am. I kept thinking that my chances were much better than this. Perhaps she is being cautious. Has anybody else asked for prognosis? What have you been told?
I’ve never asked about prognosis, but I had a similar diagnosis to you. Two invasive tumours in my case, 3mm and 6mm and one non invasive 2.5mm. All ductals. Oestrogen and Progesterone positive, Her-2 positive, one lymph node involved. Mastectomy, 4xFEC, 4xTaxotere, 15 rads currently on Herceptin and Arimidex.
I’m at that stage where I’m starting to feel scared about the future, up until recently I’ve felt quite positive, and I suppose at least I know that I’ve done everything possible to prevent recurrence, but I know where you’re coming from when you say you were gobsmacked!
Statistics are usually based on the outcomes of treatments undergone some years ago, and I don’t think Herceptin has been around long enough as a treatment for primary bc to give accurate forecasts of survival/recurrence, so I hope the possibility is that our chances are better than your oncologist quoted.
All we can do is hope for the best and get on with it.
I have never asked about my prognosis. Dx 18 years ago I had 5 years disease free before developing a new primary, then a recurrence in the skin 6mths later, a further new primary 2 years after that then about 6 years ago secondaries. Had I asked for a prognosis I suspect it would have been worse than the actuality and I would have lived with that constant fear. My thought are that with a HER2+ prognosis (mine was) the stats are not up to date. It is only so very recently that herceptin has been given to those with primary dx and this cannot yet be reflected in the prognosis statistics. I think it is true that pre-herceptin a great many of us alive 10yrs from initial dx are living with secondaries but no one seems to have really documented this fact.
My dx is similar to all of yours. I have never asked for prognosis. Still having treatment. Just completed 4 FEC about to start 4 TAX hopefully with Herceptin. I find 85 out of 100 alive 10 years later hopeful. This is better than I had read from statistics on line. But we are all individual. Also new treatments are coming along all the time. I also wonder if the benefits of Herceptin and taxotere have been factored in.
I am not really that interested in knowing my prognosis for the reasons Dawnhc has given. I just want to hopefully finish all treatment and hope that I have some good years still to come. Not live in the shadow of will I wont I make it. The worst bit of course will be the checkups afterwards I feel.
I had a 2.7cm grade 3 lump, with 3/16 nodes. When first dx I went onto the Cancer Research UK site & looked at their 10 year survival statistics. Bad move. Mine was 20 - 42%. Not good when you are 44. I told myself it was out of date (not taking into account tax or herceptin) and crossed all fingers and toes. My onc is not forthcoming with information, but when I saw one of his juniors I asked outright for a prognosis. He pulled out a dog-eared piece of paper, and said 60%. This I believe was from the Nottingham Prognostic whatever, also out of date.
Finally I went on adjuvant online (google it - you have to pretend to be a doctor to register) and this one is more up to date, but still doesn’t take account of herceptin. On that one both my ten yr survival & 10 yr disease free came out in the high seventies - very little difference between the two.
So I have gone up from 20% to nearly 80% in a matter of months! So I guess that the new treatments are miles better than the old ones, and we all need to cling on to that.
Thanks for all you comments. I know what you mean about not asking or worrying about prognosis. I just wanted to have some idea, I was hoping that my prognosis was going to take into account Herceptin and so on, that is why I thought it might be a little better! My personal life is all over the place at the moment and I think I wanted some idea of where I stood with my health. I feel great, am back at work and back running. I hate to say the word but Im a very positive person!
There’s nothing wrong in saying you are positive! I try to be positive most of the time, but can’t always manage it. I have this little mantra that I say to myself - ‘every day’s a bonus’ - and it usually makes me smile and count my blessings.
There is no real way of knowing the answer to the question you asked about 10 year prognosis because the trials involving herceptin are too recent. Noone knows for sure whether herceptin buys five years more time or cures cancer. There is room for optimism because can kill cancerous stem cells (which are normally very bad because normal chemo usually can’t touch them and her2 positive cancers have lots of them), but no one really knows what the ten year results will be.
Personally, I think that prognoses are only really useful if you are considering undertaking some major responsibility that you couldn’t easily ditch in the case of a recurrence, like having a child. My oncologist always evaded the question and one doctor wisely noted that prognoses aren’t really that useful because they don’t tell for certain what will happen to you. If you have a 30% of survival and end up on the lucky side of the statistics, that is all that matters. I know that I have outlived my prognosis.
There are a few things that seem to improve the odds, like getting four hours of exercise a week and eating those five servings of fruit and veg a day (a trial last year suggested that there was no benefit to more veg). Good on you for keeping up with the running! There is also some scientific speculation that olive oil might be beneficial and high omega 6 oils (corn oil, sunflower oil) harmful for her2 positive cancer. That is more speculative, but switching over to olive oil isn’t that much of a sacrifice.
One thing that is clear is that women who think they are going to make it are much less psychologically troubled if they survive compared to ones who didn’t think they are going to make it, so I would err on the side of optimism for purely pragmatic reasons and just focus on those things you can control.
I’m late joining this one - just logged into targeted therapies as I was told yesterday , after 4 months of knowing that my first FISH test was borderline (1.9) and another sample being sent to the lab (the cells from my lymph nodes) that it was HER2 positive (2.33) and I would be having herceptin without the battle of my onc pleading my case…
I’m 45, had widespread high grade DCIS and 11mm grade 3 tumour, 4/14 nodes affected. I’ve just had my 5th TAC and start rads and herceptin at the same time in November. So good!! My onc beleives that herceptin increases the effects of radiotherapy, but the NICE guideline doesn’t allow him to offer it to his NHS patients. I said that the NICE thing is a guideline only, and shouldn’t be that restrictive if as an expert practioner he can justify what he is doing. He then said, so what are you NOW going to ask me? and I had tho ask for it to be at the same time… maybe that puts the onus on me?!!
Now onto prognosis. I asked the question to the Sp registrar who saw me at my first onc appt. he told me 69% (again from a battered piece of paper) of no recurrence at 10 years. My Onc cons (lovely man) rang me at home the next day and talked to me for half hour. One of the things he said was ‘did you ask about prognosis?’ i affirmed, and he said, don’t think about it. YOUR prognosis is either 0% or 100%. If it’s going to come back it willprobably do so within the next 3 years. I don’t want you to live expectantly for 10 years, but do always listen to your body and investigate changes early. We can treat secondary cancer very sucessfully and I would hope it’s not cancer that kills you.’ I found this incredibly encouraging and continue to seize the day. Especially when it’s a good one!!!
Have you all read about the new vaccine for Her2+ cancers?They say it will also work on existing cancers.I am triple neg but I do hope it works for you.
Horace I think this was posted about on a separate thread somewhere - but there is not much hope yet of it working for us:
I found this snippet on a googlesearch:
Dr Sarah Rawlings, of charity Breakthrough Breast Cancer, said: “This is very early research that has only been carried out in mice so we don’t actually know if it could be used in women.
“Much more research is needed to find out if it works, to either treat HER2 positive breast cancer or prevent the disease, and if there are any side effects.”
As always the papers pick up on this sort of thing as if it was imminent.
I think a lot of us are very wary when we read about new research and findings to do with breast cancer. I think there are a lot of exciting things happening right now and for some of us they will be in our lifetime - just as Herceptin was for me - unheard of at my first dx. but now extending my life. But I do think we need to read the papers with a bit of cautious optimism.