Having been on the forums since my diagnosis in Nov last year (Grade 3 invasive ductal cancer, 5 of 11 lymph nodes affected and HER2+) - I keep seeing posts where people discuss the prognosis they were given.
Can I just ask - were you given the prognosis as part of the follow up with onc - or did you have to ask for it.
I have told my BN that I want to know prognosis and how much it will be affected by chemo/rads/herceptin etc - she appears to date to be very reluctant to discuss it (which isn’t doing me any good!) - I keep getting responses like ‘we can no more tell you how long you will survive today than we could before you had breast cancer’.
I know they can’t tell me how long I’ll live (I’m not that stupid :-p) - but I’m the sort of person who needs to know these things - I used to be an accountant - maybe that’s why I like figures lol - and equally that’s why I know they are just statistics and will mean very little in real terms.
I haven’t seen onc since the end of November - believe I will be seeing her at next chemo on 30th Jan -just wanted to find out what had happened with others so I 'm armed before I speak to her!
Hi Magz
I finished my treatment 2 years ago, from what i remember, I didn’t need to ask. My Onc provided me with a prognosis b4 I started my treatment. I think it was confirmed by use of a computer pack where details such as test results were entered… a result came up indicating prognosis if I were to have or not have treatments such as chemo, rads and hormone thx. I couldn’t remember the percentages given to me (a lot of info to take in at the time, just remembered the good bit… i.e good prognosis if I have treatment), When I started treatment, my chemo buddies talked about prognosis, so decided that at my next onc appt I would ask about my prognosis. That appt I saw the registrar (not my onc) and she couldn’t give me exact figures/percentages, but confirmed that by following the treatment plan I had a good prog.
I would def ask at the next appt, I think it helps lift the “fog” a little and gives you some direction.
I am fairly new to the forum, but I think it’s brill, hope this has been a help to you
Hi Margaret
At my 1st dx Nov 05 I didn’t ask for my prognosis and my bn reassured me that I be fine and in fact my surgeon said you be ok before my mastectomy. I am a positive person so I didn’t dwell on it. However when I was dx with secondaries a year later I did ask and my onc at that time said something like she doesn’t expect me to be around in 5 years time and sent me off to make another appointment! There was no support at all after such a devastating news (bn was off sick again and they were short staffed!) I don’t look at the 5 year prognosis and I’m enjoying my life to the full and besides statistics are just that statistics and you will see that many women here best the ‘statistics’. Good luck with your chemo on the 30th Margaret
Best wishes
Angela x
I asked my surgeon outright when he dropped the bombshell…the old standard, not thinking question…how long have I got…he told me a 70% chance with surgery, chemo, rads, tamoxifen and herceptin (not needed found out later) of getting 10 years before it came back…so…i then asked…ok so whats the 30% then…and he said thats the chance ive got of it coming back within 5…so was a bit erm away with the faries in doolally land…he then pointed out, as i told him not to wrap it up in cotton wool cos I cant handle cotton wool handling…if you dont have all this…you will be dead within the year…oh ok…slice me up, poison me, zap me and give me pills til i rattle…right, where do i sign.
I dont like statistics but thats just me…and im stubborn and have proven people wrong all my life…so am fully expecting to prove my booby doc wrong and get longer than 10 years before it comes back. Good luck with your chemo chica
Margaret - I’m the same as you - I wanted to know all the nitty gritty detail and at my first oncologist appointment (just before chemo started) I asked about survival statistics and I was given two print-outs showing chances of being disease-free for 10 yrs and 10 yr survival chances, based on different treatments. I’m not sure how it helped me except that I stopped thinking about it quite so much. I think your job does come into it. Sometimes, I feel as though I’m going into professional mode as though I’m discussing a client rather than me. I guess it’s like a self-defence mechanism. As a solicitor though, I’m afraid I take in numerous lists of questions, research everything I can and then launch into cross-examination!!! My oncologist commented on my job when he saw me and then proceeded to spend an awful long time going through the consent forms - maybe he was afraid I might sue him!!
I think your oncologist will be willing to discuss it with you but you probably need to ask him. Many women don’t want to know and there’s no right or wrong way to deal with it. When I appeared with pages of qus, my oncologist commented that he welcomed that because it told him about how much I wanted to know etc. It’s probably not appropriate for a BCN to discuss that sort of thing with you. Personally, I don’t take a lot of notice of the BCNs as my experience has been that they tend to make an educated guess at things rather than knowing for sure.
As for statistics, some wise person once said “there’s lies, damned lies and statistics”! Angela - my husband says the same as you. There are no guarantees in life anyway. Anny - yes, I agree it does lift the fog and I needed to know exactly what benefit I was getting from the treatment.
I have never been given a prognosis. I think it’s down to the individual oncs. I vaguely remember a BC nurse telling me not to ask for a prognosis as we are all individuals and statistics mean little on an individual basis. Having said that, I am like you and need to know (I am an accountant) and have scoured the internet looking at survival rates that have both terrified me and encouraged me. I am grade three, 3/16 nodes, ER+, HER2+. I have decided to stop looking at them and just assume that I am going to be alright. I’d go mad if I thought otherwise.
I used to go armed with questions for my onc but quickly discovered that he didn’t like it when I deviated from his agenda. So I pretty much gave up & only ask if something is essential. Most queries resolve themselves with time (the aches & pains that come and go, the side effects of chemo).
I asked my oncologist the first day I met him (a day after diagnossi in October 2003) what my 5 year survival chances were. He was a blunt matter of fact guy (but a man with compassion too…my ideal onc), and didn’t hesitate in saying 40-50%.
Subsequently after surgery and chemo he estimated I had a 70% chance of recurrence within 3 years.
I’ve also checked ot NPI and adjuvant at various times and know from 2003 I had an 18% chance of 10 year survival.
I know a bit about statistics. I know they are about groups in the past, not individuals now…but I know too they are useful guidance, a part of the jigsaw of informattion I need to help me live with one of the more aggressive kinds of breast cancer, which was locally advanced at diagnosis.
So how have I done? Well I’m hoping to get to October and be in that 40-50%and it seems probbale I will. I was also in the 70% who had a recurrence…a serious regional one diagnsed just over 2 and a half years after my tretament for primary bc has finished.
And what about 18% chance of survival by 2019?. I don’t expect to be among them but live in hope and have started taking bets. Who knows?
We are all different. If you are someone who wants to know then ask…but make sure your statistics is up to understanding the response! Statistics are not in my view generally well understood, cause media etc. abuse them so much.
Margaret…yuor knowledge of stats is obviously much better than mine (I’m just a social scientist who has occasionally used stats) and I can understand your frustartion. Try looking at adjuvant on line where you can put in your cancer details and come up wiith prognosis. Google search will also lead you to Nottingham Prognosis Index (NPI) which is out of date. Main problem for you is that as you are her2+ adjuvant on-line hasn’t got enough data to give a reasonable update for you. But you could get an idea. I guess you’ve got one of those oncologists who doesn’t like discussing the figures of ‘not so good’ prognoses with their patients…my current oncologist is a bit like that and its irritating.
best wishes to all who think statistics are part of the power of information
I have been looking for information about the NPI but nothing useful excavated so far. I believe my oncologist had a version of this on his Blackberry when I saw him in November and he plugged in the treatment I’d had etc. and produced something which I did not note down so he may as well not have bothered.
Is there an online version that you know of where we can “tinker” with whatever data we may have about oursleves?
I’ve copied the information below from the Cancer Bacup webiste:
"Some years ago breast cancer specialists in Nottingham worked out a formula, bringing these three things together, which could be used to help give an idea of the chances of a cure. This has become known as the Nottingham Prognostic Index (NPI).
The formula is:
NPI = (0.2 x tumour diameter in cms) + lymph node stage + tumour grade
The lymph node stage is either 1 (if there are no nodes affected), 2 (if up to 3 glands are affected) or 3 (if more than 3 glands are affected). Similarly the tumour grade is scored as either 1 (for a grade I, less aggressive appearance), 2 (for a grade II, intermediate appearance) or 3 (for a grade III, more aggressive appearance).
Applying the formula gives scores which fall into three bands:
a score of less than 3.4 - this suggests a good outcome with a high chance of a cure a score of between 3.4 to 5.4 - this suggests an intermediate level with a moderate chance of cure a score of more than 5.4 - this suggests a worse outlook with a smaller chance of cure.The NPI was based on information from a group of patients treated some time ago and as a result of improvements in treatment it may underestimate the outlook for a person (prognosis). So although the NPI is a useful guide it is not absolutely reliable and there will always be many people whose NPI predictions do not match the reality of their individual outcomes. So the NPI is a useful guide but not a guarantee of what will happen."
Hope this helps. As always use with caution ad open mindedness…and don’t panic…it doesn’'t know about you!
I had to ask my onc, the info wasn’t offered. He was very good, and did explain clearly, as Jane has said, that stats are stats, and not a definitive answer, just a guide. I did ask him as I’d seen some frightening figures on the internet, and in fact he gave me a much higher percentage survival number than I had found, so I’m glad I asked him. This was just an overall figure, not broken down by chemo/surgery/rads, as I was already on my treatment plan by then.
Thank you all so much for your comments - as I said in my first post - I know whatever they say to me is no guarantee one way or the other - I’m just one of those people that need to know. Will definitely ask onc to give me the figures when I see her. Apart from anything else, I’ve already done the NPI stats (without HER2) - and the figure aint great lol - but it’s just that - a figure. Just feel like I need someone who knows what they are talking about (rather than me taking educated or caculated guesses) to put it clearly for me
I’m not an accountant, but I feel the same wa about statistics as at the moment I feel like like I’m left standing in the dark. I had to ask and it was obvious they didn’t want to sa anything about it, I haven’t had surgery et, so that ma in part explain it. I also believe that especiall with people taking fairly new drugs it is difficult for them to say as they do not have any data (hercptin wasn’t here 10 years ago), I’m also on a clinical trial so I guess I am the one making the statistics right now…I will definitel ask again after surgery and will ask them for their opinion if statistics are not available.
For what it’s worth I was Stage 3 with one lymph nod affected out of 22 and am Her 2+. I have been told by 2 oncologists that my prognosis is a low to moderate chance of it coming back during the 5 year remission period. The head of my oncology clinic told me they are not particularly expecting it to come back with the 5 years in my case. I just get on with my work, business and daily life but make sure I bear in mind there are things I need to look out for. I could not get on with things if I worried about my situation all the time, so this is what works for me.
don’t know if this helps at all but my onc told me i had a 50% chance my cancer would return within three years if i stopped my treatment at just surgery. if i added chemo, rads, herceptin and tamoxifen, my chances went up to no recurrence within ten years at 93%. I asked him what happened after ten years… he said, if it’s not come back within those ten years, then it’s not likely to come back after it.
you can drive yourself mad but i understand the need to know.
I was never given exact prognosis figures, just advised by a very blunt Onc to have every treatment going in order to try and maintain my breast cancer to the local area, after that bombshell I didn’t want to hear anymore, infact had to have very big chat with GP and BCN to go ahead with the treatment. Glad I did, its got me thru the first 2 years, I’ve picked up info from this site, my NPI is not good (6.6) going on the above, have decided if and when i get to 5yr then will get my exact stats. I am fully aware that my path report is not the best it could have been stage 3c, but that is enough info for me.
Each to their own, we all handle it very differently, I too am HER2+ and just keep telling myself that there are no stats for long term survival with herceptin.
Margaret, I’m also the same as you (prolly being an ex-accountant)… I was getting a bit fed up with noone telling me so I forced the issue last time I had an appointment with someone who I knew had access to the software…
He says my response to chemo improves things by 50pc, so by my reckoning I have 22pc chance of a relapse and something like 16-18pc chance of not being around in 10 years, which is a bit high for my liking.
I’m just wondering for those of us that had chemo first and the lymph score can only be guessed from feeling, does that formula get recalculated if at surgery there is nothing left in the nodes, or does it not work like that?
Don’t know mousy…I had 23 nodes with cancer and that was after pre surgery chemo! I know someone who had pre surgery chemo no cancerous nodes aftwerwards but she was dead 18 months later…as ever cancer is unpredictable…lots of good news as well as not so good news. Though I seek out the statistics that doesn’t mean I’m all ‘gloom and doom;’ (hate that phrase…its just that for me realism, talking about reality is the best way to live with this. As debsy says we all handle it differently.)
Margaret, I asked my GP for a copy of the letter that my Onc sent to him. The letter was dated 2½ months after I had a lumpectomy and when rads finished, so I had to wait that long to know anything, other than I had Stage 1 cancer and was ER+++
Initally I was told I had 35%-45% chance of 5yr survival and 45%-55% of making 10yrs.I still don’t understand these stats at all! Did ask my onc about them, she said threy weren’t quite that bad but they had expected my grade 3 to come back very quickly and as it hasn’t and I’m now 4+ years down the line I like to think they made a mistake! I just keep reminding myself that I’m in the percentage who survive!