What questions to ask

I'm sorry that your daughter got this news. 

What your daughter needs to talk to her gyn and oncologist about are her options.  Some women choose to have a bilateral mastectomy and an ooph while other women prefer to enter a high risk screening program.   Her PCP probably mentioned a bilateral mastectomy because many people think that's the only real option for those who are BRCA positive, but that's not the case - it really is a question of what your risk is and how you would prefer to address that risk. The risk profile of the BRCA1 mutation and the BRCA2 mutation can be quite different - the breast cancer and ovarian cancer risks associated with the BRCA1 mutation are higher.  Do you know which one she tested positive for?  If not, this is something she should ask about.  And my understanding is that even within the BRCA1 (or BRCA2) mutation, there can be fairly significant differences in individual risk levels, depending on the specific variation that you test positive for.  So what your daughter needs to understand is what her specific risks are, both for breast cancer and for ovarian cancer.  What she decides to do, and when she decides to do it, might be quite different depending on whether she has a 30% BC risk or a 65% BC risk.  Hopefullly the oncologist will be able to explain this; if not, these are questions that your daughter should get answered by a genetic counsellor.

Here is some information about the BRCA1 and BRCA2 genetic mutations:  http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs.html

And here is a link to a great website that is specifically for women who are BCRA positive: http://www.facingourrisk.org/

I would use the visit with the onc to confirm the recommendations of the PCP.  Unfortunately, many are not current with BC and breast issues so their thoughts may be dated.  Hopefully yours is an exception.

Even after a bilat mast there is still the need for survelliance.  When I visited with my breast surgeon a week ago I asked how much breast tissue will be left behind and she said about 5%.  A bilat mast does not eliminate all the risk. This would be an area you should discuss.

Beesie -

I agreed wholeheartedly with what you wrote but I do question the stats on BC for BACR 2 that the Stanford link shows.  Everything I've read indicates that the risk of BC is actually higher for BACR 2 than 1.  As opposed to the ovarian which is much higher for BACR 1.

Here's a link to an abstract from the European Breast Cancer Conference that I was just reviewing this morning.  The stats I saw in this abstract are in line with everything else I've seen.  The name of the paper is "Penetrance of breast cancer, ovarian cancer and contralateral breast cancer in BRCA1 and BRCA2 families".

http://ex2.excerptamedica.com/ciw-10ebcc/index.cfm?fuseaction=CIS2002&hoofdnav=Abstracts&content=abs.details&what=FREE TEXT&searchtext=brca&topicselected=*&selection=ABSTRACT&qryStartRowDetail=20

Beesie -

Those are some excellent links!  Took me a while to get through them, especially when I started going off on some of the other reference links. They re-confirm the conclusion we came to -- the best determination of risk is your own family history.  Not only is the information on specific mutations scant (my daughter found 6 families that had been researched with our mutation) but the overall family genetics probably plays a big role in determining when or if a gene mutation carrier will get breast or ovarian cancer.

jgreen4 - 

I was thinking about the ovarian risk vs the BC risk that your daughter faces.  It might be good to ask the onc which risk is greater and which should be dealt with first.  I know 28 is an early age to be talking about oophectomy but there have also been studies which show a significant decrease in the risk of breast cancer when a preventive oomph has been performed.  Ovarian cancer, as a general rule, is usually more deadly than BC which can often be detected at a much early stage.  Especially with high surveillance.  You may find the following link interesting:

http://www.ohanlan.com/what_if_br_ca.htm  

You will more than likely be seeing an whole team of doctors.Your PCP and your GYN are the first line of defense.   From that point you will need to talk to surgeons aand oncologists.  There are mny types of oncologists. There are medical oncologists that handle medications &  chemo, there are oncologists that handle radiation, and there are surgical oncologists that handle the surgery.  Try to find a surgical oncologist that has a special interest in the breast. You will also want to talk to  Plastic Surgeons. Keep in mind that not all doctors preform all available procedures. Most doctors have techniques that they have been trained in doing & that is what they will recommend.  Ask how often the doctor has preformed the technique he/she is recommending.

Some cancer centers use a team approach where all the doctors on your team work together and meet regularly to discuss& review your case & treatment. A nurse navigator often coordinates your care.  Sort of many eyes looking out for your welfare. 

I broke the process down into steps. I make a list of questions for each doctor I am seeing & take my written list of questions to each visit.  Oftentimes, it helps to have someone with you to take notes and jot down answers.  I keep notepads around my house and jot down questions when I think of them.

You can contact various cancer organizations and ask for materials that usually include a list of questions.  Some organization will connect you with others that have had the procedures you are considering & they can be a good source of information.