ADH and Gail Model

Such hard decisions.  When I was diagnoised with ALH - the oncologist acted like taking Tamoxifen wasn't an option - I should take it.  I chose to have nipple/sparing masectomies.  I had a strong family history of BC, but my mom tested negative for the gene - but through genetic counseling my risk was considered 40% chance of geting bc at some point.  I have been very happy with the whole process - I really did not want to take Tamoxifen and because of having PBMX I do not have to take it.  Good luck, let me know if you have any question.

Hugs, Valerie

Ha0103

Hi yes my prophylactic surgery was totally covered. Looking back it only cost me two copays of $40. The whole process was cheaper than going to the dentist for a cleaning go figure. MRI I was told will be questionable ins coverage in the future for breasts . At $1,000 per mri

That could be a big out of pocket expense. Recovery time I was back at work in 2 weeks.

I am an OR nurse working for 20+ years. The only thing i found annoying was the drains they were in for five days. After that your chest stays a little numb but tolerable. Most times not noticeable . I went for a professional post op bra and form fitting. Wear them all the time. You would never know just meeting me. I also swim alot year round i made forms for my bikini top and only i know. I didnt go for implants because they have to be exchanged every 10 years and there r other risk factors. Personally it is not for me..... It will never feel like what you were born with. But not having very much myself the first thing i always did was take my bra off when i got home from work. If i had implants and they annoyed me cant just take them out....

The only thing i might look into next is to have nipple tattoos done for my peace my scars are very minimal. Good luck to you

Reminder: The Breast Cancer Risk Assessment Tool was designed for use by health professionals. If you are not a health professional, you are encouraged to discuss these results and your personal risk of breast cancer with your doctor.



Race/Ethnicity:

White



5 Year Risk

This woman (age 44) 4.6%

Average woman (age 44): 0.9%

Explanation

Based on the information provided (see below), the woman's estimated risk for developing invasive breast cancer over the next 5 years is 4.6% compared to a risk of 0.9% for a woman of the same age and race/ethnicity from the general U.S. population. This calculation also means that the woman's risk of NOT getting breast cancer over the next 5 years is 95.4%.



Lifetime Risk

This woman (to age 90): 37.5%

Average woman (to age 90): 12%

Explanation

Based on the information provided (see below), the woman's estimated risk for developing invasive breast cancer over her lifetime (to age 90) is 37.5% compared to a risk of 12% for a woman of the same age and race/ethnicity from the general U.S. population.

It is under the high risk forum Under Member of the '6 month watchful waiting club' unite

It may be helpful to look at some additional perspectives about the (modified) Gail model from medical journals.  It may be helpful to know something about the reliability of the numbers you get out of the (modified) Gail model.

I have (classic) LCIS and ALH and DH (ductal hyperplasia, not atypical ductal hyperplasia) with a weak family histary (1 paternal grandmother who had no daughters, 2 maternal aunts (all postmenopausal)).  The board certified genetics counselor rated my risk for a deleterious single BRCA mutation as 'low', about 2%,the same as an 'average' Ashkenazi woman.) 

LCIS automatically excludes you from the modified Gail model, but if I just put in my ALH diagnosis, I get about 23% lifetime risk (with my current info.)  If you use other models that use other factors, such as breast density, such as this model http://www.halls.md/breast/risk.htm  I get (without the use of tamoxifen which I have taken, and with LCIS) about a 60%.  When I was diagnosed with LCIS , I was able to get the Halls' calculator to get me up to a 90% risk.  **NOTE THE HALLS' MODEL POINTS OUT IT HAS NOT BEEN PEER REVIEWED OR COMPARED TO THE APPROPRIATE POPULATIONS**  This is important, because the number of women with known ADH, ALH, and/or LCIS is not known, but many papers refer to these are rare or unusual conditions.   Usually, ALH or LCIS are only found after a biopsy.  Most papers I have seen say that LCIS confers almost  twice the breast cancer risk of ALH or ADH.

My onc gave me about a 30-40% risk, and my 2nd opinion at a NCI-certified center said my risk was 'somewhere between 10 and 60% but closer to 10%.  If you want further information, you need to go to journals.' One NCI sponsored paper referred to LCIS has having moderate risk.  So, the various sources had given me somewhere between a 10% and 90% range.  That's a pretty large range. 

I talked to my primary care doc, and he said there was a lot of unknowns.

  This academic journal paper gave me some clue as to the real state of breast cancer prediction.  http://jnci.oxfordjournals.org/content/98/23/1673.long   It was written in 2008, but I'm not aware of any new, better breast cancer prediction models.

This paper refers to an Italian model, with authors DeCarli et al.  http://jnci.oxfordjournals.org/content/98/23/1686.abstract?ijkey=d6e60bc928ecd88172885d14d6f5f309938d671b&keytype2=tf_ipsecsha  The Italian model includes breast density as a factor.

Decarli et al. also assessed each model's performance at the level of the individual woman. A model that discriminates well at this level should consistently predict a higher risk of breast cancer for women who will be diagnosed with the disease than for women who will not. Decarli et al. randomly selected pairs of women, one of whom was diagnosed with breast cancer and one of whom was not, to determine the frequency with which each model calculated a higher risk for the woman who developed breast cancer. 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. <emphasis mine>

...Current breast cancer risk prediction models perform well for populations but poorly for individuals.

These papers refer to women who don't have known atypia or LCIS, but if they have this very poor record about predicting breast cancer in 'average' individual women, then you can imagine how poor it is for ALH, ADH, or LCIS women.

I realize that the tamoxifen package insert says the Gail model can be used to identify women at higher risk, but that's probably because we don't have other alternatives (probably excluding women who are at higher risk for BRCA mutations, where there are other breast cancer prediction models.)