What is threshold for PBMX w/recon?

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KittyGirl
KittyGirl Member Posts: 48
edited June 2014 in High Risk for Breast Cancer

What is the threshold that a BS will use when determining whether to perform a PBMX w/reconstruction?  I have heard anywhere from a minimum of 40% on the Gail Model to a minimum of 60% on the Gail Model.   Is there a standard?  Any links?   

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  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    No, there are no standards that I know of.  I have LCIS, and my breast surgeon said she does not want to do anymore surgery on me.  Many other LCIS patients have been urged to get prophylactic bilateral mastectomies.  Some of these people do have significant family histories of breast cancer, but some do not.

     http://www.cancer.gov/bcrisktool/RiskAssessment.aspx

    Be Very Careful about Gail Model breast cancer risk estimations.  See

    http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673

    Even if you don't understand a lot of the statistical jargon, it is easier to understand this one sentence.  What they did is take one randomly selected person in the group that had breast cancer, and another randomly selected person in the group that did NOT have breast cancer, and compared their Gail model scores at the beginning of the study.   If the model worked perfectly, it would predict correctly 100% of the time and have a concordance value of 1.  If they worked as well as the roll of a dice, they would have a concordance value of 0.5.  

    In other words, for 59% of the randomly selected pairsof women, the risk estimated for the woman who was diagnosedwith breast cancer was higher than the risk estimated for thewoman who was not. Unfortunately, for 41% of the pairs of women,the woman with breast cancer received a lower risk estimatethan her cancer-free counterpart. Thus, for any given woman,the two models were better at prediction than a coin toss—butnot by much

    I think most high risk women who have prophylactic bilateral mastectomies have a significant family history, or have had significant radiation exposure (such as radiation treatment for Hodgkin's disease or exposure to a nuclear bomb, this is not several chest Xrays.)

    If you are contemplating PBMs, and are BRCA 1&2 negative, if I were you, I'd strongly consider checking with your insurance carrier whether or not they would cover PBMs before you have the procedure.

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  • Kimber
    Kimber Member Posts: 384
    edited January 2010

    Kittygirl,

    What puts you at high risk? 

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  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    Even if an oncologist, or gynecologist, or internist  STRONGLY recommends bilateral mastectomies, they will NOT happen unless you find a surgeon who is willing to do them.  (You have to find a doctor who will do the job.  While it is LEGAL  (in the US)  for a general practitioner or dermotologist (for example)  to do mastectomies, or brain surgery for that matter, most facilities will not allow non-surgeons to do major procedures.)

    I get the impression that some women get mastectomies from general surgeons, but unless they regularly do breast surgery, many people get reconstruction from a plastic surgeon or breast surgeon.

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  • LISAMG
    LISAMG Member Posts: 639
    edited January 2010

    The single greatest contributing factor why women consider and/or have a PBM is family history, This may be with or without a BRCA mutation being present, with the latter being termed un-informative BRCA negative since there are genes out there not yet identified. Having a significant family history, there are many insurance companies that will cover preventative surgery using evidence based criteria alone. Not so sure risk models weigh so heavily, although do contribute. If a woman has a history of many biopsies with abnormal findings and with a significant history, this may also be reason enough for prophylactic surgery. In the past, I have read where physicians will gauge the very minimal threshold at 40%-50% being high risk, if this helps.

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  • KittyGirl
    KittyGirl Member Posts: 48
    edited January 2010

    My mother and her sister both had breast cancer.  And both, fortunately, are still alive.  I am also "dense" but that does not count as a factor in the Gail Model. 

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  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    According to this paper, adding things like breast density did NOT help very much with the accuracy of the modified Gail model to make treatment decisions for individual women.

    Recent attempts to improve the Gail model by adding information on other risk factors, such as breast density, have improved the concordance statistic somewhat by bringing it up to 0.66 (16,17). However, in most situations, even a concordance statistic of 0.66 is still too low to make management decisions for individual patients. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

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  • KittyGirl
    KittyGirl Member Posts: 48
    edited January 2010

    Are there any models that are better than Gail for individual risk assessment? 

     .66 accuracy seems awfully low.

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  • LISAMG
    LISAMG Member Posts: 639
    edited January 2010

    I agree Kittygirl, the Gail model is currently in-accurate and outdated, as noted with more recent research. This is especially true for high risk women, according to recent findings. The simple fact of breast density, now a well documented risk factor, not being taken into consideration has sounded alarms for many healthcare providers.

     Breast Density and a Better Cancer Risk Model:

    http://www.ucsf.edu/science-cafe/articles/breast-density-and-a-better-cancer-risk-model/

     More helpful info. on density:

    http://www3.interscience.wiley.com/cgi-bin/fulltext/123193635/PDFSTART

    http://www.ncbi.nlm.nih.gov/pubmed/19910376?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed

    Mammographic density: a heritable risk factor for breast cancer:

    http://www.ncbi.nlm.nih.gov/pubmed/19107441?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed

     Potential mechanisms of breast cancer risk associated with mammographic density: hypotheses based on epidemiological evidence

     http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2374950/?tool=pubmed

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  • soapsnug
    soapsnug Member Posts: 65
    edited January 2010

    Hi Kittygirl,

    I, too, strongly considered having prophylactic bilateral mastectomies, back in 2007.  I had just had a scare, with a BIRADS rating of 4 after a breast sonogram.  The object that was picked up on the sonogram was actually a cyst, but I felt like I was reaching my limit, with respect to tests, biopsies, frightening reports, etc.  I spoke with my surgeon (general surgeon who does a lot of breast surgery) about it.  He'd known me for 13 years at the time, and had already done three excisional biopsies on me  (two turned out to be fibroadenomas, and the third was an area of hyperplasia--it was not atypical).  I had no family history of breast cancer (though my mother was recently diagnosed with IDC at the age of 76), I'm BRCA negative (though I didn't know that at that time), and according to the GAIL model, my lifetime risk of getting breast cancer was 24%.  I told my surgeon that I had been thinking a lot about prophylactic mastectomy.  He said that he would do the operation, if I wanted to go that route.  Since I had just had a battery of tests--sonogram, mammogram, MRI--and found out that all I seemed to have was a benign cyst, I thought I had plenty of time to think about it (I was only 40 at that time).  One year later, I was diagnosed with DCIS.  After that, I had the bilateral mastectomy (one side was prophylactic).

    Just out of curiosity, I just checked out what my GAIL model risk would have been when I was 40, had my mother already been diagnosed with breast cancer.  It still would only have been 30%!

    Best of luck, Kittygirl.

    Audrey

    Edited for typo

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  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    There are other breast cancer risk models, but I have not found any of them posted free on-line.  (I have not searched very hard either.)

    While breast density  UNDOUBTEDLY IS a risk factor, it is not a STRONG ENOUGH risk factor, according to this article, to separate people who got breast cancer from those who did not. 

    Why is it so difficult to develop worthwhile breast cancer prediction models for individuals? First, the risk factors used in current models are widely prevalent throughout the population and are neither highly sensitive nor highly specific. In addition, a risk factor must be very strongly associated with a disease (with a relative risk of about 200) to be worthwhile for screening (18), and the same appears to be the case for accurate prediction using combinations of risk factors. Most risk factors for breast cancer are relatively weak. Even “strong” risk factors, such as older age, mammographically dense breasts, and radiation exposure, are as- sociated with relative risks of less than 10. [Deleterious BRCA1 mutations in young women may be an exception (19).] http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf (emphasis mine)

    To me, it sounds like the above statement applies to ALL breast cancer risk models, because they do not include additional risk factors with a relative risk of >10, preferably more like 200 (with the possible exception of BRCA.)  I may be wrong about this.

     This paper cites these references in Table 1:

    Breast cancer risk prediction models Absolute risk prediction
    Ottman et al. (13) Anderson et al. (14) Gail et al. (15) Taplin et al. (16) Claus et al. (17); Claus et al. (18) Rosner et al. (19); Colditz et al. (20) Ueda et al. (21)
    Tyrer et al. (22)
    Risk prediction of gene carrier status Couch et al. (23) Shattuck-Eidens et al. (24) Parmigiani et al. (25); Berry et al. (26) Frank et al. (27); Frank et al. (28) Antoniou et al. (29)
    de la Hoya et al. (30) Vahteristo et al. (31) Hartge et al. (32) Apicella et al. (33) Jonker et al. (34)

    http://riskfactor.cancer.gov/cancer_risk_prediction/workshop/JNCI_Workshop_Commentary.pdf

    In spite of these big problems, insurance companies can and I suppose often do use the Gail model or other models to assess whether or not to reimburse PBMs. (I have no personal experience with this matter.)  I assume its because they don't have a better model. 

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  • KittyGirl
    KittyGirl Member Posts: 48
    edited January 2010

    Do other countries use the GAIL model? 

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  • leaf
    leaf Member Posts: 8,188
    edited January 2010

    From the same paper,

    The Gail model was developed and validated in the United States (5,6,9–11). However, breast cancer incidence rates vary fourfold by geographic location, with some of the highest rates in the United States and northern Europe (12). Given this wide vari- ation in breast cancer incidence, it was not known how well the Gail model would perform internationally. In this issue of the Journal, Decarli et al. (13) used data from a multicenter case– control study in Italy and from Italian cancer registries to develop a new breast cancer risk prediction model that used the same risk factors as the Gail model.Decarli et al. then tested the relative predictive accuracy of the Italian and Gail models by using inde- pendent data from a cohort study in Florence, Italy (14,15). They found that the two models produced similar results.  ttp://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

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