What's your Gail risk assessment?

Mamma fox... Perhaps I am not understanding the Gail Tool, but it appears to be something that would be used before BC... Meaning that the majority of the folks on this site would not get it done now since it is not an accurate tool if you have BC. If I ignore the fact that I had BC in one breast and complete the tool simply based on the info related to the other breast in isolation of my BC my score is 2.0. this is considered high risk... Which would be accurate in my case. Most of us are concerned with recurrence versus the likelihood of getting a new primary. The odds are much higher for me that I will get BC back... Vs get another new BC. hope that answered your question.

I just finished chemo in January 2011 and radiation in April 2011.  I am triple negative with metaplastic features.  I am interested in this Gail assessment.  My doctor put me on tamoxifen even though I am triple negative and said I was at high risk for a second primary in other breast.  I tried this drug for one week and put on 14 lbs. and was very uncomfortable.  I called my onc and told them I had stopped tamoxifen.  2 weeks later I tried it again for 10 days with same results only second time most of my newly grown hair fell out.  He also suggested I leave my port in and told me many of his patients leave them in the rest of their lives.  Should I be concerned? My tumor was 2.5 cm with no nodal involvement.  I have been very worried since treatment stopped and unable to celebrate completion of treatment.  I probably should seek some professional guidance.  I hope you all do well.

We would all like to know 'What is my risk for breast cancer?'

The Gail model will not work if you have a personal history of invasive breast cancer, DCIS or LCIS.

I know the academic paper I cited has some very complex ideas in it, but it compared the modified Gail model to another model that included other known risk factors such as dense breasts (but not invasive breast cancer, DCIS or LCIS).  It looked at a population of women in Florence, Italy.  The modified Gail model, and the other model did a very good job at predicting the *number of women in the group* that would get breast cancer.  

However, the modified Gail model was poor at predicting the risk of any random woman in that population.  They described it as 'better than the toss of a coin, but not by much'.  So they can predict how many women in a large group (in the US and Florence, Italy) will get breast cancer, but they don't know which women.

So the modified Gail model is not appropriate to use in

a) Any group of women that has a personal history of invasive breast cancer, DCIS or LCIS.

b) Any individual woman, regardless of her personal history, unless, MAYBE if she has a bad BRCA gene.

So if you ask 'What is my risk of breast cancer?', the modified Gail model won't work well, except maybe if you have a bad BRCA gene.

I don't know about things for invasive breast cancer, such as Oncogene score.

Hi Valarie - (I'm also Valerie) - the oncologist told me my Atypical Lobular Hyperplasia was considered pre-cancerous also.  Not sure what my Gail assessment is - but I went to a genetic counselor who took all sorts of info-family and my past biopsies and said my risk was 40% to get breast cancer at some point in my life. 

Valarie - I haven't heard of Ductal Epithial Hyperplasia - so you don't have ADH but Ductal Epithial Hyperplasia - so I that isn't pre-cancerous right?  

For the genetic counseling they took information from my father and mother's side - who had cancer and what types (aunt, cousin, my mom), age when I started menstruating, age at first birth,did I breast feed, how many kids I had, how many biopsies - my mom's diagnosis and if she was BRCA positive.  I also contacted as many family members as I could and asked if they knew of anyone in the family that had cancer - and if so what types and when diagnoised - focusing on breast and ovarian cancer. 

Thanks for the info vmudrow!

I was concerned that if I do go for Genetic counciling, that I wouldn't have documented information.  I do know which family members, their cancers and the age of when they died.  Hopefully, that will be enough.

As far as Ductal Hyperplasia, my understanding was that it was not pre-cancerous.  Here is a link that explains: http://www.neomatrix.com/healthcare/Nipple-Aspirate-Fluid-Information.aspx

Basically, it goes from normal tissue, to Ductal Hyperplasia, then Atypical Ductal Hyperplasia (pre-cancerous) to DCIS.

mammafox, my diagnosis is almost identical to yours.  I am seeing a Breast Specialist next month.  I know I'm high risk with so many family members with BC, but I don't know much else.  No one has recommended a course of action.  The surgeon in January told me to have an MRI and mammogram alternating every 6 months.  But, I don't know my risk percentage or anything else.  Hopefully, the Breast Specialist will be able to advise me on where to go from here.

"ductal epithelial hyperplasia without atypia" is another name for "usual" or "regular" hyperplasia---it is a benign breast disease which increases risk approx. 1.5 to 2x.  The next level up on the bc spectrum is atypical hyperplasia ( ductal--ADH or lobular---ALH) which is considered precancerous and increases risk 4 to 5x.  Did your oncologist say if it was atypical or not?  Because that distinction is very important and affects your overall level of risk, so it would be worth getting that clarified. The general recommendation for ADH/ALH has been just yearly mammos and twice yearly breast exams, but recently it seems like more posters are getting recommendations for MRIs and tamox as well (when I was diagnosed with LCIS almost 8 years ago--yet another step further up the bc spectrum with 8 to 10x the risk---tamox was still left up to me (I took it for 5 years) and I had to fight to finally get MRIs (which I go for routinely now)--so things are definitely changing all the time. However. tamox is not generally recommended for hyperplasia without atypia. Atypia  is the main thing that changes the whole scenario. Tamox actually is approved for use in anyone with a GAIL risk of over 1.66%; but you want to make sure that the benefits of taking it outweigh any risks for your particular situation. It doesn't come without SEs.

Anne 

My 5 year risk is 6.7%, 10 year is 13.5%, 20 year is 25% and lifetime is 46.7%.

Seems low until I look at the lifetime risk, then it makes me want to start popping tamoxifen like candy!

Here is the link to the calculator:

http://www.halls.md/breast/risk.htm

When I put my numbers a few years ago, my score on the Halls' model was about 90% lifetime chance of breast cancer without tamoxifen.  (I have a weak family history, and classic LCIS.)  The Halls' model uses the Gail model and adds some additional factors.

As Dr. Halls points out in his website, his calculator has NOT been peer reviewed, nor has it been compared to the appropriate populations.  Those are CRITICAL factors.

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)

No paper I've seen that looks at actual rates of breast cancer of LCIS patients estimates their risk (at least without concurrent deleterious BRCA mutations) that high.  I believe the doctor I saw at a NCI certified cancer center, who said my lifetime risk of breast cancer (I have classic LCIS and a weak family history) is 'somewhere between 10% and 60%; you'd have to go to journals to get a more accurate answer.'  I've never seen a paper that estimates the risk of breast cancer for a group of women with LCIS (at least without a known deleterious BRCA mutation) as >60%.

In Table 5, the incidence rates for IBCs are listed and categorized according to the type of surgery performed for the preceding LCIS. Most patients (n = 3,141; 68%) had partial mastectomy with or without axillary lymph node dissection. One thousand two hundred eighty-one patients (28%) had mastectomy (including total mastectomy, modified radical mastectomy, or radical mastectomy). Few patients were coded as having surgery less than partial mastectomy (n = 178). Rates of IBC occurrence for patients with partial mastectomy were greater than with mastectomy, and the magnitude of this difference remained constant over time. At 10 years, the incidence rates were 8.8% for partial mastectomy compared with 5.7% for mastectomy (ratio, 1.5); at 15 and 20 years, the rates were 12.6% v 9.5% and 16.7% v 11.0%, respectively (ratio, 1.5; Table 5).  http://jco.ascopubs.org/content/23/24/5534.long

Now, 90% lifetime risk predicted from the Halls' model is a lot different than the 18% risk at 25 years as seen in the Chuba paper.  Even if you double or triple the Chuba paper results, you get <60% lifetime risk.

In this more recent 2008 paper, it looked at the Gail model scores for women with atypia.  It found that the chance of the Gail model accurately predicting the risk of invasive breast cancer in individual women was about the same as pure chance.

For the first 5 years after biopsy the c-statistic was 0.47 (95% CI, 0.21 to 0.73), no better than chance alone. During the entire 13.7 years of follow-up, the Gail model predictions were concordant with invasive breast cancer outcomes 50% of the time (95% CI, 44% to 55%), also not significantly better than chance. This finding is lower than assessments of the Gail model in other cohorts, where c-statistics of 0.58 to 0.59^{13, 14}http://jco.ascopubs.org/content/26/33/5374.full

As the Gail model specifically says, None of these Gail model estimates should be used to make medical decisions.  Please don't scare yourself unnecessarily.   The Gail model is fine for looking at the risk of groups of women with certain risk factors, but, in this study, the Gail model was no better than chance at predicting which person in that group would get breast cancer.

You're right, capediem.   The Gail model is probably the best we have.  I just want people to understand how inaccurate the Gail model is for individuals - its almost as accurate as no model at all.

Probably the Gail model  is the most widely studied (for a woman who does not have a history of invasive breast cancer, DCIS, LCIS, or hereditary breast cancer syndromes.)  Certainly the Gail model is the most popular.  There are other breast cancer prediction models, but they require a lot more information input, such as much more detail about family history, and are not as accessible to the health care provider.

Even when they have tried to add some other risk factors to the Gail model, such as breast density, the concordance figure essentially does not improve.

The resulting calculation produced a concordance statistic, whose value could range from 0.50 (equivalent to a coin toss) to 1.0 (perfect discrimination). The concordance statistics for the Italian and Gail models were essentially the same, approximately 0.59 (with 95% confidence intervals that ranged from 0.54 to 0.63). In other words, for 59% of the randomly selected pairs of women, the risk estimated for the woman who was diagnosed with breast cancer was higher than the risk estimated for the woman who was not. Unfortunately, for 41% of the pairs of women, the woman with breast cancer received a lower risk estimate than her cancer-free counterpart. Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much.  http://jnci.oxfordjournals.org/content/98/23/1673.long

Here's more about comparasions of different breast cancer prediction models.    http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional#Section_66

I did both risk assessments and didn't like my lifetime odds at all on either of them. Under 50% but way above the 12.6% norm.... 44%... Not liking that at all.... Of course I am factoring in my second biopsy being benign... Of course won't know that until Thursday... It's possible my lifetime risk is already at 100%... I guess the thing about all this testing, and the risk factors is, there is nothing I can do to stop it. I am either going to develop breast cancer at some stage of my life, or I won't... Until it happens I plan on living life to the fullest. If it happens, I plan on living life to the fullest, with a new set of girls... Either way, I will live life and not let it bring me down...

Yes, I know easier said than done..... 

Leaf I am looking at it this way for now, there is a chance in my lifetime due to certain factors out of my control, that I will develop breast cancer at some point in my life... Then again there is also a chance a won't. My fear right now is having to go through more biopsies. This hasn't been a comfortable experience to say the least. I am thinking okay, if I am going to get it, let's get it over with and move on......

Yes, you're right.  Going through biopsies is awful.  It would be so nice to move beyond the anxiety. 

I have anxiety issues, and, for me, unfortunately, even though I know PBMs would decrease my chances of breast cancer and decrease my anxiety, I'd still be anxious.  My feelings aren't very logical.

Crossing my fingers for you, AMP!  I hope its as Boringly Benign as possible! (as opposed to Interestingly Benign or worse)!