On Friday I asked my oncologist about my prognosis. She quickly looked at my notes and said my chances of a likely recurrance was 40 percent (I’m assuming over five years). This seemed higher than the percentage I calcuated from Adjuvent online - and raised this with my onc - who said this calculating device was okay but essentially not that finely calibrated. She also dismissed the NPI as being out of date (just as well as the figures from that were very depressing.
My questions are:
a) are there any other methods/calcuation devices for determining prognosis… I wonder even if individual hospitals develop their own??
b) is the 40 percent likelihood of a recurrance a really common one to have as onc suggested(I know it depends on all the component factors) i.e the category where patients more or less have an evens chance of going on to develop secondaries… and if so what are people’s experiences of this…? Just wondering I suppose if I am living on borrowed time until the inevitable happens…
My stats by the way were tumour 3.5cm, grade 2, IDC, ER moderately positive, HER2 negative and early 40s…
Bright
Bright - i have seen this sumary of results on a few sites…
cancerhelp.org.uk/help/default.asp?page=3317
I’m slightly different as i have IBC which really has its own staging rules etc…
Theresa
thanks theresa,
I hadn’t seen this one.
Bright x
Please try to bear in mind that stats are just that - stats. It’s very important to remember that every cancer is different and 2 people with an identical prognosis can have different outcomes.
In my own case, I was told I had a low to moderate chance of it coming back within the 5 year remission period, but I was also told by the oncologists they did not particularly expect this to happen in my case as I had responded well to everything and was undergoing treatment with Herceptin. However, I know this is not guaranteed, so I try my hardest just to live in each day. I had counselling last year and learned a lot about diversion tactics for taking my mind off things and I have found things like meditation invaluable.
Hi Brightlight
My onc always seemed to bypass questions I had regarding adjunct online and outcomes. I went through a stage where I really wanted to know statistics around my outcome, so I felt I had to research for myself. The following US website seems to be coming up with ‘similar’ stats to what I could ‘squeeze’ out of the onc. I like the fact you can view the data in different ways and see numerous stat combinations with and without different therapies. Hope this helps. But please, as previously mentioned, bare in mind similar cancers behave differently individual to individual.
cancer.lifemath.net/breastcancer/therapy/index.php
Thanks so much Twinny for this calculator. And promise I won’t live my life by - and as Cherub says every cancer is different.
Long may we remain well.
Bright x
Hi,
thanks Twinny I have just been playing around with figures on here too.It really is fascinating to me being a Mathematician. I am on a research trial and had often wondered what difference it would have made if I had gone for our local standard treatment of FEC instead. Have you tried changing the graphs as survival rates sound so much less daunting than mortality. The pictograms are really easy to understand if anyone finds graphs off putting.
I had SNB and afterwards discovered I only had one node removed, which was ok. This really nagged me for quite a while as my head said what are the chances of them getting the right one and what if… Surgeon eventually put me right recently, that the structure of the tumour is a factor. Mine was a very simple structure going to just one node which was flashing bright blue and red hot on the geiger counter. So they only took that one. I assume that means some branch out like roots to more? I still can’t work out why grade one tiny tumours can still get to a node, is the site within the breast another factor ie close or further away from nodes?
Thanks again and good luck to all of you.
Lily x
I’ve looked at the lifemath thing, but wonder how it can predict the outcome when you are not asked to input treatments like Taxotere or Herceptin. All I could input was FEC.
It gave me lots of options for chemo… do you mean you had fec and tax…?
Just been back and you are right no herceptin option (i am her 2 neg so wouldn’t have noticed that…)
Theresa
Thought so - just looked it up and FE(100)C*4 D*4 - one of the final options is fec full strength and docetaxol another name for taxotare (they called it docetaxol at my unit…)
Theresa