chance of cancer later. What the H&% is my MD talking about?

Bedo,

I asked my oncologist the same question. Apparently, they can't answer it because they really don't know. Your oncotype score is probably your best answer because it is based on the characteristics of your own cancer, but it only provides the estimate for systemic recurrence (I think). Like you, I wanted to know the risk for both. There was a recent study published in the Lancet that talked about long-term recurrence rates, for those who take Tamoxifen for 5 years versus those who don't. I am not sure I am recalling the numbers properly, so don't want to put them in here and get anyone upset, but if you put "Lancet" in the search I think you will find the study. It does include the long-term (i.e. 15 years) numbers for risk of local and metastatic recurrence. However, I don't think it divided up stages I, II, and III.

Karen

Susan - love that quote.

Bedo,

I looked back up the Lancet study. For those of us who are node negative and ER positive (again, they don't actually list stage, just node status):

10-year risk of any recurrence WITH taking Tamoxifen for 5 years = 19.1%

10-year risk of any recurrence WITHOUT doing 5 years of Tamoxifen = 34.8%

Susan'sGarden: We all cope differently - some of us find numbers useful, some don't. For me, they were very useful: I had done a year of Tamoxifen and started to have bad side effects and was about to give it up until I saw from the Lancet study that it results in an absolute benefit of 15% and that it continues to provide benefit long after we stop taking it. The numbers for the 15-year point REALLY made me sit up and take notice: a recurrence risk of 46% if I don't do my 5 years of Tamoxifen. I honestly don't know if I will make it 5 years on Tamoxifen, but I figure every dose I take, I'm doing something good for myself.

Your surgeon is right - you can't just add up the figures to get the chances of having a recurrence, systemic or local.   You have to filter out the chance that you would have both a systemic recurrence and a local recurrence.  Look at it this say.  Say you have a 60% chance of having A happen and indepently, a 60% chance of B happening.  If you want to know what are the chances of either A or B happening you can't just add the two probablities - that would give you a probablitiy of 120% - an impossibility.  So there is a formula you can use that factors out the chance of both A and B happening.

I don't know the formula off hand - I would have to look it up, but I can tell you from my experience in applying it that given the figures above, you can use 13% as an approximation that you would have either a local or systemic recurrence.  The actual percentage would be slightly less. 

Bedo, sometimes I wonder if oncs understand statistics.  I remember when my husband tried to explain this concept to my onc.  He just didn't get what my husband was saying. 

Here is the formula you can use to calculate the chance that one of two independent events will occur, where the two events are A and B:

1 - ( (1 - A) x (1 -  ) = the probability that either A or B will occur.

When I was trying to figure out if chemo was worthwhile for me (multi-centric cancer, two oncotype scores) I used this formula to figure out my chances of recurrence:

Oncotype score #1 = 16, chance of recurrence 10%

Oncotype score #2  = 8, chance of recurrence 6%

1 - ( ( 1 - .10 ) x ( 1 - .06 ) ) = 0.154 or 15.4%

You could plug in the numbers your doctor gave you. And if it were me, I'd want to know how they came up with those numbers, even if they were just wild ass guesses.

 

Susan's advice is some of the best I've heard!  But I think at some point near the end of our active tx, we all go through exactly what you're going through, bedo -- trying to get our heads around how much risk of any recurrence we're really facing.

One thing I've figured out is that today's stats don't reflect today's txs.  In other words, women who are alive today who had tx ten years ago didn't get it on the same RT equipment, didn't have the same chemo regimens, and probably had older surgical techniques.  So I believe that thanks to improvements in tx, our stats will be better than those on record.

Also, those available stats make no differentiation between a woman who exercises daily and maintains a healthy weight, for example, vs. someone who doesn't.  And while it's true that exercise alone will not always prevent a recurrence, I tend to think of doing or not doing all those things (nutrition, stress-relief, exercise, balanced hormones, removing chemicals from our lives, etc.) as adding or subtracting a cumulative measure of insurance for most of us.

So, yes... try to get your head around a stat if you need to, but then let it go and choose Susan's path of hope!    (((Hugs)))   Deanna 

Well Bedo I don't think you are being a PIA at all.  Wanting to understand your prognosis does not make you overly anxious.  It just means that you are a practical person who likes to have some control over and knowledge about the things that affect you.

I hope you find your answers

By the way I don't think SusansGardens post is some of the best advice I have ever heard.  I thought it was patronising of Bedo and it didn't answer the question she was asking and it gave unsolicited advice. As touching as the stories about childhood anxiety overcome are, they are not relevant to Bebos question about getting a better understanding of her situation.  I think these comments invalidate what Bebo is feeling now and only complicate what she is trying to do here.

There are many people who don't like statistics. There are other people who like this approach. There really is probably no need to go onto each others threads and tell people that your way is the best. 

 If you have nothing constructive to offer, move onto the next thread.

SandyAust ~   wow.

Just thought I would add that numbers are not only usefull for treatment choices. I am 43 and seven years out from diagnosis.  My twins were four when I was diagnosed. I found after treatment it took me about two years to come to terms with how to live my life.  Do I put stacks of money away for retirement or do I more things to live the best life I can now?  I often felt guilty for working part-time rather than being home full-tme with my boys.  I stayed home for the year after treatment finished.  I then decided, based on statistics, to learn to live my life with greater care and appreciation but pretty much based on my approach pre-cancer. I feel that information gives me understanding, knowledge and greater ability to feel in control.

I like numbers and I like to plan for the worst but hope for the best. That is not a path to despair, it is just a practical mind at work.  That practical mind and love for statistics led me to have life insurance and critical illness cover. This was essential for me to get once my husband and I were to become parents.  Thankfully when diagnosed I was able to pay off the 50 per cent of my home that was owned by the bank.

Bebo I hope you find a doctor who will give you what ever you need to deal with situation you are currently facing.

Take care,

Sandy

I hope you are able to find a more accurate percentage (and that it is nice and low)  ... if I was a betting woman (I'm too frugal to gamble ...I would lay odds that you and your daughter will have many more decades together!