Genetic Counseling worth it?

panthrah

Heres the deal: Im 39, I found a bump… they found many more ( fibros) and "one" they didn't like w/ Micro calcs. Biopsy and LX both b9. Grandma had BC at 80 and her sis and a few of my moms half-sisters. Some docs say that's a family history some don't. MO says it is and wants me to do the genetic counseling. Family doc says bmx, BS says we don't need to discuss this now, MO says maybe in a couple years. …know that THEY brought it up I never did.

Since Im already labeled "high risk" (period at 10, no babies, family history, LCIS, very dense breasts, busy breasts, and a couple other big words) is there any point to getting the genetic stuff done? I mean.. if Im already high risk what more could they tell me?

leaf

You are probably at lower risk than you think.

*If* you have a BRCA 1 mutation, and if you are younger than 40, then that would put you at substantially higher risk than any other risk factor (besides being a woman.)

Although some breast cancer prediction risk tools do include second degree relatives (such as grandparents, aunts, uncles, or cousins), many do not. Remember, most models score relatives that have pre-menopausal breast cancer more strongly. My paternal grandmother had breast cancer, as did several maternal aunts. These breast cancers were all over the age of 50. I went to a genetic counselor (because I have an unusual family tree), and was judged to have a weak family history. I did not have genetic testing (I would have had to pay for it out of pocket.)

Please know that the science of breast cancer risk prediction is definitely in its infancy. The modified Gail model automatically excludes people with LCIS. Even though tools like the modified Gail model have been peer reviewed and verified on populations of people with those characteristics, it is really, really poor at answering the question, "What is my risk for breast cancer?" http://jnci.oxfordjournals.org/content/98/23/1673.... Even if the modified Gail model included LCIS, this article says the modified Gail model for an individual is 'better than the toss of a coin, but not by much'.

Why are the models so poor?

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 associated with relative risks of less than 10. [Deleterious BRCA1 mutations in young women may be an exception (19).] http://jnci.oxfordjournals.org/content/98/23/1673.... (emphasis mine)

Here is a table that lists many breast cancer risk factors, and none of them (except for women younger than 40 with a BRCA 1 deleterious mutation) have a relative risk >17. Of course, this table is approximate. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC151447... It rates having a 2nd degree relative having breast cancer as a relative risk of 1.5.

So, just because you have several risk factors does NOT NECESSARILY mean you have higher risk. If someone has factor A and Factor B, that does not mean you can add those risk factors together. You have to look at the population of people that has those particular risk factors. Since they don't accurately know the risks of LCIS, let alone LCIS with other conditions, there are a lot of unknowns.

I have seen academic papers that refer to LCIS as 'high risk', and other papers that refer to LCIS as 'medium risk'. One paper used 'high risk' in one part of the paper, and 'medium risk' in another part of the paper. When I went to an NCI-certified center for a 2nd opinion, they opined that my classic LCIS confers a lifetime risk of somewhere between 10% and 60%,but probably closer to 10% than 60%. My genetic counselor said around 30-40%, and my oncologist said 30%.

Remember, in the USA, about 1 in 8 women will get breast cancer in their lifetimes. It is estimated that about 80% of women who get breast cancer DO NOT have some sort of risk factor (besides being a woman.)

I had genetic counseling, but not genetic testing. I found the information very valuable. If I got genetic counseling, I would go to an NCI-certified institution who has board certified genetic counselors.

Personally, I would trust what a board-certified genetic counselor told be about my breast cancer risk than other persons. It is an excellent idea, though, to ask how well they know that information.

I had 3 breast biopsies after my LCIS breast excision. All were nothing worse than what I already had. I have had no other breast issues since 2007.

panthrah

Leaf- Thanks for all that and taking the time to reply. MO did say expect more biopies.. which the first didnt bother me at all. Side note.. MO didnt put me on Tamoxifen because I have the blood clot gene

leaf

I think that docs are much more likely to do biopsies in the first few years after LCIS diagnosis, because they don't want to miss any pre-existing potential cancer. I haven't had a breast biopsy, or any repeat mammograms, or any other breast issue, since 2007. Overall, probably over 50% of classic LCIS women will _never_ go on to get anything worse than what they already have.

I found genetic counseling valuable, because I learned more than I knew. I only regret I had not asked how well we know that information. Genetic counselors should not pressure you to make one choice or another. It sounds like you have a more complex situation because you have blood clotting issues. But I would encourage you to learn all you can, finding out what we do and do not know, taking your time to make your decision, if you've already had a breast excision around the area where LCIS was found.

panthrah

Id like to think Im pretty informed about LCIS and options and IF anything else ever comes up, I read lots to know what the general protocol is. Im not overly stressed one way or another. Just learning as much as I can.

leaf

In my book, informed decisions are the most anyone could ask for. I'm so glad you're taking all you can find, plus your feelings, into account to plan how you will handle this. It also helps to know you are not alone. Best wishes.

panthrah

yes having this site and seeing that other people have been through/ going through the same stuff has made a much difference Again.. thank you for all the info