risk calculators

I saw this as a link on snpedia, but I don't know how accurate it is. My risk comes out at 46% over my lifetime, a scary thought.

Please don't have a panic attack, like I did,when I put in my numbers into the Hall's calculator.

The Hall's breast cancer risk calculator is NOT accurate FOR INDIVIDUALS (in other words, predicting the breast cancer risk for you, or for Aunt Maria or Mrs. Singh down the road).   Note the Hall's site specifically states

Although this calculator is based on published risk statistics and methods gathered from peer-reviewed journals, this web page's specific methods and results have not been peer-reviewed. So, you should not use the results for medical decisions. The results are estimates. http://www.halls.md/breast/risk.htm  (emphasis mine)

For the first several years after I was diagnosed, I didn't understand the implications of this.  When I was first diagnosed with LCIS, I could get my Hall's figures up to almost 90%.  This was about 3 times higher than anyone else had predicted.

Then I found this opinion article in a medically peer reviewed journal, which gives you some idea how LITTLE they know about breast cancer risk prediction. http://jnci.oxfordjournals.org/content/98/23/1673.full.pdf&nbsp  Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much. 
This included one model that took into consideration breast density.  In brief, the Gail model and the model that included information about breast density had up to about 59% accuracy.  This means that it predicted correctly in about 59% of women.  Unfortunately, it predicted WRONG in 41% of women.  Note that in an unbiased coin toss, you should have 50% chance of getting a heads and 50% chance of getting a tails.  So 59% is not very much better than 50%.

So, they can  pretty accurately predict how many women in a population in the US or Italy will get breast cancer, but they have very little idea which specific women will get breast cancer.  Exceptions may be people at VERY high risk, such as have a deleterious BRCA mutation, or have had chest Xray TREATMENT (such as for Hodgkin's lymphoma).

http://community.breastcancer.org/topic_post?forum_id=47&id=769374&page=1

Is the Gail model the same as "BRISK", the screening tool of the NCI?  By the way, I also got the "85%".

"Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much.  " 

Sorry, there seems to have been a problem with the posting.  I wrote two lengthy posts, and all that came out was the quote--twice.

Anyway, don't want to keep typing forever, and gotta get to work.

Leaf, thank you for pointing out that these prediction models are only broad estimates, and they are not too useful for individuals.  Wish we had a crystal ball.  I can't seem to get a good handle on my individual risk at this juncture, particularly for the contralateral breast.  I have had ADH and ALH diagnoses, and the DCIS was extending into lobules, but I didn't get an LCIS diagnosis.  So, I don't know if I have additional risk to the contralateral breast, which I would like to know, as I contemplate taking hormonals. I thought that anything "lobular" might increase risk to both breasts (at least slightly), over the general population.

Are the "AI's" also risky for DVT and PE's?  I know Tamox is.

I would feel the way you do, since you can't do anything beyond surgery, and you are at bilateral risk.

I was just zapped with the rads, and the rad onc believes she took care of the treated breast.  If I had your history (with the ovarian stuff), I'd also feel the need to do something. 

I'm scared of the side effects of the AI's.  The Aromasin is a steroid, and I can't imagine doing that for five years unless really justified (that's the med they have proposed for me--I know it's of-label).

Ballet, yes they all up your clotting risk. My surgeon was actually a little frustrated with the oncs because she felt my PE was very different than a spontaneous one. I had a twenty pound tumor plus large volume ascites. Had tremendous pressure in my pelvis impeding the blood return from my legs & the ascites put lots of pressure on my lung & heart. I was severely dehydrated & bedbound. It is really not very likely that I am at any higher risk than average now for clots but they still say it is an absolute contraindication. Heck, I even got tested for clotting disorders. I'm probably LESS likely than some others.

It was awful. Horrible to almost die of something that turned out to not be nearly as bad as the doctors thought. They gave me a really bad prognosis going into surgery based on my scans, condition & tumor markers. Turned out to be low malignant potential. I woke up 40 pounds lighter than I went to sleep. My next follow up is next Friday and it will be a month shy of two years. I hope I get to go to semiannual f/u instead of quarterly after this one.

Thanks Ballet. Since there isn't much I can do about it except screening I'm just going to try really hard to not worry about it.

(((Melissa))) What an incredible story! Thank goodness you are ok now!

You'd think after having to give myself Lovenox shots in the belly for six months I'd be more afraid of clotting. I think having all this BC stuff crank up so closely on the heels of having been so sick with another cancer and having just started to feel good after surgery has definitely colored my "what are you more afraid of thinking".

Carpe, what model are you using that jumps your percentages with each biopsy? All the ones I have seen just ask >1 biopsy and if atypia was found. Just curious. Thanks

Just drops me from 87 to 80...

Out of curiosity, I tried the risk calculators (the Gail model - I don't have particularly dense breasts so the other one gave the same results) and it said the chance of my having been diagnosed at my age was 1.7%  (lifetime was about 20%).   Guess I should start playing the lottery!

Was wishing I hadn't gone out to check the Hall's model but am so glad I read this thread.  It gives me a much better understanding of the state of the art of risk assessment.

leaf--thank you for your clear explanations and for the link to the journal articles.  Very helpful!