Hi All
A friend has recently been diagnosed and had her mastectomy. She had stage 1, grade II lobular AND Invasive Ductal Oestrogen + and has been told that her prognosis is a 93% chance of no return which I have never heard of before.
She was also told it was up to her whether she has chemo or tamoxifen or both, with a further 3-4% survival rate if she has these treatments.
Anyone ever been told something similar?
Thanks all!
Cecelia. x
Hi, I wad told I had a 96% chance of it not returning, just means that that particular tumour shouldn’t regrow. My bc was grade 2 invasive, oestrogen + I’m currently on tamoxifen.
Thanks CCL, did you ask you if you wanted chemo or tamoxifen?
Hope you’re doing well? 18 months more for me on the tamoxifen!
Cecelia. x
Sorry I mean did THEY ask you if you wanted chemo or tamoxifen?
C.x
Hi
I was given a 93% chance I’d be alive in 10 years - grade 2, 7mm, no nodes. The stats came from Adjuvant online, the onc printed out the prognosis for me. There was a 20% risk of a local recurrence in that time. Maybe your friend has 10-yr survival confused with risk of recurrence?
As for choice of treatment, yes, I think that’s always given as an option. It can never be compulsory.
Jane
Hi again cecelia,
Onc never have me the chemo option, said I didn’t need it, so I ‘just’ had rads n tamoxifen, currently 8 months on from dx, trying to get my life back to ‘normal’ whatever that is!
Take care, x
Hi Jane & CCL
Thanks so much, I’m finding the prognosis confusing. I was just told I’d have the belt & braces treatment with no options! Stage II with no lymph node spread.
So to you both does it sound like they are giving her a 93% chance of no local return (of the tumours removed) and at least 10 year survival rate do you think?
CCL - were you given a further % survival rate because you had rads & tamoxifen? Hope life is feeling more normal for you, 8 months is not long so hang in there! Hope the rads didn’t wipe you out too much and the tamoxifen isn’t treating you tooooo badly!
Cecelia. x
Although Jane72, when I say no options, I’m sure I could have refused. They just strongly advised it.
C.x
It’s all soooooo confusing isn’t it? No further %, didn’t really get told an awful lot, and didn’t ask, just wanted to know that they’d got ‘of’ all!
Also onc did make my chemo decision, I was deffo never asked (would’ve remembered that!).
Was fine on rads, it hit me more when they’d finished - tiredness that is, skin was ok, fine on tamoxifen too, considering folks on here say it hits you harder if your pre menapausal which at 36 (37 tomorrow!) I am 
maybe just early days yet!
Hope your keeping well chuck x
Thanks CCL - glad you’re doing well so far, hope you continue to as well. Wow you’re young for it, HAPPY BIRTHDAY for tomorrow! Hope you have some nice fun planned.
Thanks for your replies, it means a lot. I’m doing just fine thanks, 4 years from diagnosis on 1st June this year so all good!
Cecelia. x
I think I was given about a 93 per cent chance of no recurrence and was given the choice over whether or not I had chemotherapy. My oncologist made it clear that Tamoxifen was non-negotiable though and I came to the conclusion that if I was given the choice over chemotherapy then it meant that I probably didn’t need it. I decided to take two years of Zoladex instead (the middle path?) as I was pre-menopausal and haven’t regretted it. I’m three and a half years down the line and there’s been no sign of a recurrence.
Hi.
I was given chemo choice, 89 % without, 94 % with, i decided to go ahead with chemo & have just had my last one, now awaiting Rads then heading to Tamoxifen Towers for 5 yrs 
Sarah.xx
Can the medics really be so precise with percentages… everyone has such a complex set of individual factors that I think they are sounding more precise than is realistically possible. What is the real difference between 89% and 93%? But then I’m always skeptical of stats that try to give specific answers to complex situations…
Hi
I was given a 95% chance of still being alive in 10 years time and a 93% chance of so called ’ no return ’ over the the next 10 years so a 7% chance of it coming back. I am grade 2, 10 mm, no lymphnodes and am currently having 6 X FEC, will have 5 weeks of radiotherapy and tamoxifen for 5 years.
I too am very unsure of so called ‘stats’ and i still worry every day about it returning and panic over every ache and pain that i have. I don’t think i will ever stop worrying, constantly researching to see if i can find any info on recurrence rates esp with grade 2 cancers.
Melxx
Hello,
My Adjuvant Online said that with treatment which includes chemo, rads and hormones my increase was 13.7% to just 83.5%, so not as high as yours!! However I have taken the increase as a positive and hey I could get run over by a bus tomorrow!!!
Although I live in a very rural setting so it would probably be a tractor and they don’t move very fast so the point is moot!!!
I like that I have some stats but I think there can be all sorts of variables which can alter them and my view is to take each day as it comes, not to get too hung up on numbers and enjoy every one!
Wandyx
Wandy you are so right xx
gosh, I am not expecting the results of my op for weeks yet, and so dont know if i am going to be clear or having this sort of discussion. By that time this thread might have disappeared, so I will ask now.
when they discuss percentages with you can you ask for a printout to take away and think it over?? my son is a statstician in cancer research and I think if I got to that stage I would like to discuss it with him before making a decision.
has anyone on here looked at the percentage and decide not to have the treatment?
Hi all,
as I’m sure you know stats are a minefield, and can be made to say pretty much anything. With the recurrence ones, you’d need to know whether they’re a generalised estimate of recurrence for a person with your type/stage of bc, or are they specific to a woman with your risk factors/age; also, is that a lifetime risk? Remember every woman has a lifetime risk of developing bc of 20%! You’re far more likely to get it at 75 than you are at 45, but then it’s less likely to be aggressive if you’re older.
The trouble with these risks is that, as Wandy says, you have a whole host of other risks that you’ve forgotten about because we all have them. So why focus on the bc if you’ve got a pretty good chance of it not recurring? Those are good odds however you look at them. It’s the terror instilled by the word ‘cancer’ that’s the problem - some unlucky people have good reason to be afraid and have poor odds. But most of us have a pretty good chance of dying at a decent age of something else with no recurrence of bc. Think about cardio-vascular disease - loads of quite young people have high risk, and signs of this, and it causes death! But most people don’t worry about it and carry on smoking and being unfit.
We all have a 100% lifetime risk of dying. Should I be scared?!
I know how hard it is not to worry, bottom line if it comes back it can be treated again, and you’re being checked. Most likely it won’t come back, and you’ll die of something else. So do whatever you feel will minimise your personal risks and enjoy your life - you’ve got a great chance of having lots of it left! Don’t waste it worrying.
Big, big hugs
xx
Hi O & L,
I was given a printout with the statistics on but only after being asked by Onc if i wanted to see it, he also explained that 10 yrs didn’t mean only 10 yrs but that is the period of time they work on as that is when most/if reoccurance can happen.
I was given the printout at 1st meeting with Onc after surgery.
I did have treatment for the extra 5 % chance but have to say this decision was made after many tears, lots of discussion with Gp etc & after being told by Onc that chemo for me maybe like hitting a nut with a sledgehammer as had small tumour 9 mm no lymph node involvement or vascular invasion but was still grade 3 which is what
swung it for me, having said that since making decision my new (younger Onc) has told me that it was very much indeed the right decision as my percentage now is just 2 % higher than a non Bc person, so as i head into Rads then onto tamoxifen i do it with the feeling that i have chucked all that i can at it & know that i have made the right choice for me.
Sarah.xx
Very well said Bubbletrouble
Sarah.xx