percentages of benefit

am not sure where to post this - but can anyone help in deciphering what is meant by percentages given…for example, I was told that tamoxifen would give me in the region of 5% benefit - I am probably being horribly dense but I don’t quite understand what is means - 5% added to my survival chances ?

Hi Chipper - did your Onc. give you a breakdown on your prognosis using Adjuvant online?

My BC was Grade3 ,Stage 3 so I knew I was at high risk of developing secondaries. The onc. said that if I had no more treatment after surgery I would have a 60% chance of a recurrence within 10 years.

If I had chemo that would improve my chances ( ie give me benefit) by 12.7% and hormonal treatment (Arimidex) for 5 years would give me another 10% benefit- so in effect I could improve my statistical chances of survival by nearly 23 % overall .

I really didn’t want to have chemo but in the end agreed to it- I have to believe that it has substantially improved my chances of survival.

Hope this helps you.

thanks topsymo - no,didn’t get a breakdown on prognosis using Adjuvant online - I think they reckoned that they’d got everything out with good margins, only a grade 2 ,no vascular or lymph invasion seen - rads and tamoxifen recommended. 5% seems a small benefit really.

Hi chipper

looks like you are going through what I am going through. The % can either mean the chance of still being here in 10 years time or the chance of it recurring in the next 10 years. The 5% benefit is the added benefit of you taking tamoxifen on top of he surgery and rads already recommended. My diagnosis is similar but the stats are different.

Surgery and rads gives 74% chance of it not coming back, tamoxifen adds 9% benefit, chemo 11% benefit, chemo and tamoxifen together 16% benefit. So added bonus of chemo is 7% overall. I’m in the very difficult position of having to decide if I want chemo or not - you can see the discussion under the forum on chemotherapy if you are interested.

You can plug your stats into adjuvant!online if you want - it’s fairly easy to use, but it might not help.

My surgeon said that the side effects of tamoxifen are reversible whereas those of chemo are not. My attitude for myself is that it would be silly to to at least try tamoxifen, but not so convinced about chemo.

Hope that helps - if not, try the helpline, the people on the phone are very helpful,

goodluck

Helen.

thanks Helen, yes have been following the thread too ! you are in a tricky and difficult position - it must be much harder in fact. Really wish you luck in your choice…I tend to think that chemo would purge anything that has escaped surgery and although the side effects and overall effects can be severe I think I might go for it, if I were you.

Just browsing.

It always seems to me that the key question to ask about whether to have chemotherapy or not is: if the cancer comes back and I have not had chemotherapy how will I feel?’

And a second question: ‘if the cancer comes back and I have had chemo how will I feel?’

% on top of what is also key. I did chemo for a 5% chance of improving 40% statistics. It did, as expected, come back.

good luck to everyone contemplating hard hard decions.

Jane

Hi Jane, that’s a good way of looking at it - I see Onc for the first time tomorrow with a recurrence after 12 years and mutation from g1 to g3 and have been mulling the whole thing over since learning about the mutation and implications of it. First time out was easy to treat - tamox and mastectomy, this time everything about it seems complicated.
will be glad to get Onc visit done and have a plan

I haven’t used Adjuvent online but have used Cancermath.net which I guess is similar but you may find the outcomes of therapy expressed in a way that makes more sense. Give it a try. It doesn’t take Herceptin into account either. Maybe it hasn’t been around long enough for their statistics.

Their website is: lifemath.net/cancer/breastcancer/therapy/index.php

Hope it helps.

Macc

I am bringing this thread back up as I am also confused about the percentages I have just been given.

With my type of cancer, if only surgery were undertaken, 80% of people would die in 10 years.

With chemo and hormone therapy, there is a 41.3% benefit.

Does this mean I add the 20% survival rate together with the 41.3% and have a 61.3% chance of surviving 10 years?

Apparently, Adjuvant Online doesn’t yet combine the % of hormone and chemo with HER2, so I have a whole separate set of %'s for that!!:
Again, with my type of cancer, there is a 94% chance of recurrence, but if treated with Herceptin, I get a 45.3% of benefit.

I am thinking those stats do not look great, whichever way!!

i don’t know if this calculator will help…

lifemath.net/cancer/breastcancer/therapy/index.php

it takes into account more things…

Theresa

Thanks Theresa. I think that does make a bit more sense, although it still doesn’t give a survival % including herceptin treatment. But I think I understand a bit more now and am not quite so scared. Still thoroughly p!ed off though.

Hi Flora29

Having read your thread I would tend to agree with your assumption that you would add the 20% to the 41.3% increasing your figures to a 61.3% chance of surviving 10 years. You would then be able to increase this figure even more if treated with Herceptin.

My take on all this is that if I could possibly increase my chances by as little as 1% then i would grab the opportunity with both hands. For your own sake try to see the glass as half full, If you can do this, you’ll increase your odds even further. Your statistics of 61.3% + Herceptin mean that you potentially have a 2 in 3 chance of surviving the 10 yrs, and a lot of women on here would be delighted to swop with you and be given those odds.

This is all so scary for us all and it is very hard to try to be positive but sometimes we need others to help put things into perpective, I do hope this helps you.

Big hugs and lots of positive cyber vibes are being sent your way Flora29.

PS I’ve been up since 3 this morning so i do hope this makes sense!!!

Stellam XXX

Hi Flora

Can’t remember who said it but I think this is true for a lot of us; if you have all the treatment that the medics think you should have at least you know you gave it your best shot for survival and the chance of raising your family. As someone who is out the other end of slash, burn, poison I also find it useful not to think of percentages of benefit, after all we either survive or we don’t, are disease free or not. at one stage I became math obbsessed trying to work out my “odds”. In reality no one is a percentage! And if you survive because you had chemo and would have died prematurely otherwise then your benefit is 100%!

Good luck, good health and long life to all

Love
Jane x

Hi Girls, I have never had to think of percentages as you all seem to have been doing. It all sounds very complicated…
However they are only percentages…
This may give you something wlse to think about. I was given a 50% chance of surviving 2 years when I spoke to an Oncologist when I got diagnesed with secondaries…that over ten years on and I am still here and hopefully doing well. It hasn’t all been roses…but I AM still here… A nurse today asked me for my date of birth and after I told her, I mentioned that I would be 60 soon. She said how did I feel about reaching 60. My reply was that I was delighted to be 60, because when I was diagnosed first aged 39 I thought I would never see my daughters grow up. So every year has been a bonus and I intend being around for a long time yet. ( I know things can change overnight, but I am hoping that I have a bit of life left in me yet!). LOve to you all and I hope you don’t spend too long on percentages…just enjoy life if you can…one day at a time. Love Val XX

Thanks for your comments and support.

I kinda didn’t want to know the figures - but the conversation had been talking about the possibility of having children in the future, and I need to know to be able to make informed decisions about that. Now I have been given them I want to understand them but not obsess about them, and I’m not planning on telling anyone else. Is that bad? Don’t want them to worry, when there is nothing more we can do to change it in any case. I am getting every treatment possible, so I can’t ask for more than that!!

Oncologist did mutter that Herceptin gives an additional 22.5% benefit, so I have more than 80% chance of making it another 10 years (and hopefully clearer after that), so I am a lot less scared now. I’m not going to dwell, and agree a % is just a ‘chance’, not an absolute. I WILL be one of the 80%. xxxx

Hi Flora, You fooled me with your new photo. I didn;t recognise you from yur previous one. You look gorgous, (and did in your old photo too). A few people keep changing their photo and it fools me everytime as in my head I get to know who each person is, then I get mixed up when a new photo comes along. Anyway I looked up your own personal page and that is how I found out…hope you follow this.
I wish you all the best and I sincerely hope you are one of the 80% Much love from Val.

Sorry!!! And Thank you!! xxx

Even 1% extra surviving is an awful lot of us…and we’ve got as much chance as anyone else of being in that 1%. I gratefully took all the treatment they could throw at me.

Scottishlass, way to go!! This is the first time I’ve read your survival story. You keep going kiddo. Hope you don’t mind me saying it the way I said it.

Regarding stats. I started with a 45% chance of the 10 year scenario if all I did was surgery. Hmmm, not good. Chemo and rads take me to about 85%, allegedly. Tam is supposed to take me the rest. It seems to be incremental. You start with your baseline survival rate with surgery then they keep adding the percentages. Don’t get hung up on it though. The entire population has only a 97% chance of surviving the next 10 years, statistically. You see? As someone said, you survive or you don’t. Believe that you will. It won’t make it happen, but it’ll give you a shot at the life you have. And, maybe 30 years from now we’ll look at this thread and go, wow, I’m here. Maybe we won’t. There’s no knowing. Live for the life you have. Bring it on!

Well said CaroleD! I’ve been trying to get stats to the back of my head as I know deep down they are not useful to me as a person. The whole idea of ‘survival’ also doesn’t sit well with me. I want to live a normal life again, not just survive. It’s unfortunate (but inevitable) that we are led down the route of thinking like that, but your perspective regarding statistics is a much better, and to me more real one. I will re-read your post next time I start to get anxious about the future.