I questioned my onc to bits re stats so in the end he showed me all the computer results. My cancer was only grade 1, stage 2 but I had node involvement. Resutls for me for 10 year survival were
only surgery 67.4%
surgery and tamoxifen 76.1%
surgery, tamoxifen and fec 79.5%
surgery, tamoxifen, fec and rads 85%
tax only added another 1% and onc said he would sign me up for 3 fec, 3 tax if I wanted but as the gain was only small and the se’s harsher it was my decision.
I decided to go with just the fec.
His final comment was, of course you still have the 1.8% chance that everyone has of getting run over by a bus for example.
I asked for a copy of the printout that they put in my records, my onc used adjuvant online but if you want to know the stats you have to ask for them.
mmm i chose not to look at the stats, as they are generic, but i was advised they were what the onc’s used to decide what treatment was better.
i get scared and cant think of reaccurance, just the journey im on at the moment, im have to put faith in what im being given. xxx
Well I’m on FEC-T coz i have/had …1.9cm grade 3 er+ Her2+ tumour wot had got to a node…just 1!
Also I am also considered young…49 at diagnosis but not menopausal…so as far as onc concerned what she called a younger womans presentation!
Also due to family history they wanted to bash it hard! (Gran, mum and aunt died of it and daughter has it…she was lucky (??) in that it was 1cm and no nodes but also Her2+ and er+ so she had FEC x 6 as no nodes.) Also if HER2+ you have to have chemo to benefit from it! (herceptin)…very complicated!
We are now being investigated for genetic links and possible BRAC genes but thats a whole other issue!
With both me and my daughter the additional benefits are not huge but I’d rather have it…i think…than not!
Must say i’m more worried about the really long term effects of all the drugs…the ones they seem not to mention!
Yup, I’d googled my stats online beforehand, so though I knew they wouldn’t be as up to date as the site the oncs use, I had a good idea. Hadn’t factored into the equation that my OH didn’t know them, and I think it was a bit of a wake up call to him that there is no magical cure, or a specific date in the near future when we could say that I no longer had breast cancer.
The stats below assume that they got a clear margin when I had mx, which is now in dispute, as the onc. re-read my path report… so this doesn’t take any rads into account as at the time it was thought I wouldn’t need them… still don’t know if that’s so yet.
Surgery alone gave me a 54% chance of being here in 10 years time.
Surgery plus 6FEC 78%
Surgery plus 3FEC3TAX 81%
Surgery plus 3FEC3TAX plus tamoxifen 86%
I know it’s ‘only’ 3% - but right now that’s good enough for me - 81 sounds so much better than 78!! and the extra 5% from tamoxifen is good news.
My cancer was stage 2, grade 3 and one node involved - which might be why my chemo stats seem to make a bigger difference, even without factoring in rads. Just goes to show how different each case is.
Sophie xx
I’m scared now. What site is it that you can put the stuff in to find survival rates?
Nottsgal - the survival sites we have access to are not that accurate - get your onc. to do it for you if you really want to know - the results you’d find online yourself will not be as promising, as they are based on data that is not always up to date with treatment.
Remember tho, statistics are just that…statistics. Odds could be 99-1 - but what good is that if you are the 1? They are more useful for weighing up pros and cons of treatment than for visualising how much time we have left!
Sophie xxx
OMG, it all sounds a bit scary. Some of you sound so clued up, I have to admit that I didn’t even think to ask about stats, etc and they didn’t mention stage. I think I’ve been a bit numb about it all and just gone along with what’s happening as though it’s not really happening to me.
I am 45, had 2 lumps, grade 1, 1 node and am having 4xFEC and 12 weekly tax which works out to be 4 if it was every 3 weeks, then rads and tamoxifen. Am due to see the onc. on 20th Dec before first tax on 22nd and think I need to start to feel a bit more in control and ask more questions. Only thing is I still get quite emotional so I need to make sure I’m in the right frame of mind. Even today, having coffee with 4 close friends and I couldn’t stop the tears coming - very shortlived but they just seemed to appear out of nowhere!
By the way, my tax is paclitaxol, anyone else on that or is yours taxotere? Not sure what the difference is?
Thanks Sophie
I think I have to see the onc before the next FEC so I’ll ask her. But as you say, it doesn’t always predict what’s going to happen. After all, for women up to age 49 only 1 in 52 gets BC - that’s 2% and I’ve never been in the bottom 2% for anything before :0/
Pam
I think sometimes the names get confused cos there’s the generic drug name & the brand names - a bit like nurofen (trade name) & Ibuprofen (generic drug). I didn’t do the stats thing but may change my mind. all the ONC mentioned when I started talking about it was a very casual sounding “oh about 85% - yes that’s about right”- pne of the main reasons I didn’t ask to see though was cos OH was with me & he didn’t want to know. I had already looked at the online stats & knew that they were a bit less accurate so alsready had an idea of what it was. As others say - these are only averages & cannot predict what will happen to YOU- it’s just a tool for them to use to plan your treatment rather than a formula to tell you if you will survive - No one knows that so it seems best to put it our of your mind most of the time if you can & focus on the more important issues like the pros and cons of merkins and whether anyone will break the taboo & admit to getting themselves vejazzled.
BTW - my OH actually “tried on” my new boob -well stuck it down his T shirt to see what it would be like to have boobs - Now I ask you. good job I wasn’t Bi-lateral or I’d be getting worried he was trying to tell me something
Hi everyone, have been reading all the posts and was going to write something last night but I lost my post and then I was too tired to write it again. Just about caught up with what has been happening with you all today.
Firstly I was going to say well to Reeb for going for run. I went to circuit training this morning before my first FEC and felt really good. Exercise is meant to be really good for those going through chemo if you’re feeling up to it obviously.
Also saw ONC yesterday and asked about Emend but she said it was only given to certain ‘named’ patients on particular drugs. I might make more of a fuss next time if I get side effects!
The other thing someone mentioned to me was about GCSF which it may be worth mentioning to your ONC Kaz as it can stimulate you blood cells so that the chemo isn’t delayed at all.
Anyway today went for my first FEC and short staffed so had to wait for almost 3 hours to even get going. I embarassed myself cause when I did finally go through I started crying. Because they were conscious of the time and that my arm wasn’t warm enough (it was 3 hours previously!), one nurse I think rushed to put venflon into my hand which was agony and immediately ‘blew’! Fortunately she got another nurse who was lovely, got venflon in first time with minimal pain and filled me with a lot more confidence.
Had cold cap which was fine once I got used to it. Feel ok at the moment but will be popping the pills to hopefully make sure that it doesn’t change.
Hugs to everyone
Oh yes and nearly forgot: My name is Angie and I’m a BCCaholic!
You survived the first one Angie! Well done! Hope you don’t feel too sickly now…
Big hug
Lulu X
I wouldn’t ever worry about statistics as thats all they are statistics! You can worry yourself to death about anything! The really important thing is we are all relatvely young fit and healthy and so what if we happen to have been hit over the head by bc…the thing is with or without bc we have no idea what will happen next week next month or next year! We have to live in the moment and seize the day…life is great grab it!!!
You can tell i’m a cup half full person…and I am!
My daughter is the same she is not letting bc dominate her life as far as she is concerned its a minor issue!
Millikins -haha, I bet your OH looked a sight. Trouble is if you do decide to be vejazzled is he going to want to share in that experience as well?!!
xx
Ang well done for getting first one done - I am sure I will blub like a goodun once they actually start putting the stuff in. Hope you have a good night. I got told that they aren’t allowed to just give Emend unless it is seen to be medically necessary - i.e you have to suffer bad side effects the first time to be “allowed it” next time. It’s expensive so that is why but others on here have had it first time so I thinbk depends on your authority & also your ONC. I intend to embellish things if I am nauseous on my first one in any way so I get it next time
Well done Angie, first one done and out of the way - and do not feel embarassed for ONE MOMENT about crying when you went through - I am absolutely certain that the nurses are very used to tears - it’s not exactly a joy ride that we’ve signed up for, is it? Actually, don’t even remember enlisting, let alone signing up for anything!
Sorry you had a nurse in a hurry, not a great start, but glad it got sorted and that the cold cap was ok too. Keep popping those pills, I hope you zap any se’s before they start to kick in.
Sophie xx
I totally agree with LIF. Cup half full. And if you start worrying about what might happen to you you would stop driving a car, going hiking, doing extreme sports, jumping on a plane/train, swimming in the sea…You’ d stay in the house, and EVEN there you wouldn’t feel safe as something could happen to you. In other words you’d stop living (while you are still alive). Grab life ladies. And never give up.
Lulu X
Well done Ang. I had my first FEC 10 days ago and feel fine now except for very sore mouth. I was really sick the first night, then felt sick and therefore kept taking the anti-sick pills for the next 5 days.
Milly, it wasn’t so bad when they were putting the stuff in. It feels cold as I think they keep it in the fridge but if you don’t look at it going in and just chat to the nurse, it’s possible to pretend that being injected with poison is perfectly normal.
well said Lulu x
LIF - You’re so right, its great having people like you around!
Ang - well done, that’s the hardest bit out the way. Take all the pills.
Jo - yes, more important things to worry about - I’m off to look at vagazzling!
Hi girls. Another up and down day for all today.
I never even asked anything about stats. Think at the time I just blindly accepted what I was being told.
Anytime they ask if I’ve got any questions I only want to ask if I can have a glass of wine. Must be a bit shallow. Will try harder to pay attention next time.
I’m supposed to be on 3 Fec then 3 Tax but think they are going to measure tumour shrinkage after three times then see about changing. Think if tax is stronger I would want( wrong choice of word) that just to be sure.
Hope all who had treatments aren’t too sick/achy.
Nite nite.
Xx
By the way My names Trish and I’m a BCC addict.