unilateral vs. bilateral mastectomy dcis

Hope, if your family members have tested positive for the BRCA mutations and you have tested negative, then that may be the best possible result.  What it means is that they know the cause of your cousins' breast cancer - it's genetic - and it appears that you have not inherited the same gene. It means that your risk level will not be higher because of your cousins' cancer. In fact it's quite possible that your risk is no different than the risk level of the average woman.  

When the BRCA mutation is in a family, there is a 50/50 chance that each member of the family might inherit it.  Since the cousins are on your father's side of the family, this likely means that one of your father's parents - either his mother or his father - carried the BRCA mutation (unless your cousins inherited from their parent who is unrelated to you).  This mutation can be passed on to any of children in the family, but each child has only a 50/50 chance of getting the gene.  This is because this gene is inherited either from one's mother or one's father.  So if we say that it was your grandfather who had the gene, perhaps he passed it on to some of your aunts and uncles (the parents of your cousins) but not to your father.  Your father instead inherited this particular gene from his mother.  If that's what happened - that your father didn't inherit the gene - then you can't have it either.  It doesn't matter how many of your cousins have BC or carry the gene because you can only get it if your parent has it.  And even if your father did inherit it, you still would have had a 50/50 chance of getting it or not getting it - you might have inherited this particular gene from your mother.

So from what you've explained it sounds as though you are in the clear genetically.  The one thing that confuses me is your comment about them wanting to check for other mutations.  Because your family members tested positive, it should be very easy to know which mutation they have and if you don't have it, that's the answer - you are BRCA negative.

As for what to do, I too was in a situation where I had to have a mastectomy - just too much DCIS in a small breast.  When I had a benign biopsy for calcs in my other breast, and then when the MRI showed up clear, I decided to have a single mastectomy only.  That was 5 years ago and I am very glad I made that decision.  A mastectomy and reconstruction is not a simple or quick process for most of us and it's one that can have lingering - and lifelong - side effects, including loss of feeling, numbness, muscle aches, phantom itching, etc..  Not everyone experiences all these side effects but most women experience some.  I am grateful every day that I only have to deal with this for one breast.  Plus, with one natural breast, I have all my "natural" feeling on one side.

Even though I had a single mastectomy, I choose to not take Tamoxifen.  The reason to take it would be to protect my remaining breast and I know that I am high risk to get BC in this breast. At the time of my diagnosis, my lifetime risk to get BC again (in my remaining breast) was estimated to be about 22%, which meant that there was a 78% chance that I'd never get BC again. I can live with that.  And for me, Tamoxifen would only have reduced my risk by about 4 points, to 18%. That wasn't enough benefit for me.  But then I'm pretty good at dealing with risk.  For the first year or so after my diagnosis, I worried a lot - I think most of us do - but after a while I stopped worrying and now I really don't think about it at all.  Others who worry more might not be able to live comfortably at this risk level but for me, it's not a problem.

What you need to do is understand what your risk level is to be diagnosed again in your remaining breast (talk to your oncologist about this) and think about how you deal with risk.  That should help with your decision. 

Good luck with your decision. 

As always Beesie has cover all the basics.. I would like to add  one or two thing as after thoughts.. First I believe that a Nipple Sparing Mastectomy could help you recover better than a normal simple mastectomy.. For some reason my comfort level with the areola and nipple is just not been the same since my bi-lateral reconstruction... I believe that I could have been spared a great deal of emotional pain if there was someone in town who could have done a nipple sparing mastectomy at the time of my surgeries.  It is a cleaner process and it is much more comfortable for our brain to adjust if the look is the same.  The other thing that I would like to puncturate, as Beesie has included it in her statements, is to confirm that a bi-lateral mastectomy was an incredibly difficult emotional hurdle and now 3 years out I am still not over it.. more comfortable yes, but my breasts don't look great even though I was told by several ps that I was a great candidate for symetry as well as a very good outcome.. I have neither!  As a matter of fact I ended up having to have the implants replaced within the first year and the pocket of my right breast revised.  Now I also had DCIS and with my family history (father died of bc) my surgeons really pushed me to have a bi-lateral (more from their own ignorance and not from a good understanding of the risk IMO) as I was pushing for "watchful waiting".  I wish now that I had had the DCIS removed and followed through with the "watchful waiting".  I know that sometimes the DCIS is spread too much for a lumpectomy to be promising, but I would have only removed the one breast if that was an issue.  Please remember this is all in hindsight.. so I went for prophalactic removal of both my breasts because of the pressure of my docs.  Don't fall for that, make sure you do the research and do the procedure YOU want.. and once again (I know some of you are probably sick of hearing this one) but if I was walking through this experience again I would have added a therapist to the mix of doc's - it is such an emotional loss for many women I'm surprised that this is not done automatically when a women (or man for that matter) is dx'ed with any cancer!  This is a difficult decision to make and I was bombarded with "helpful advise" from so many people, including the doc's that  I could no longer be my own advocate and choose the "watchful waiting" that my mind was so set on after doing my own research.  A therpisit will help to drowned out other's comments and really hear your own voice behind the many other people you love and know and their well intended comments and advice - they don't have to live with the consequences to this but you do .  Good luck and keep us informed... Best, Deirdre

Twiddle:  LISAMG IS "presented with a diagnosis"  read up on DCIS you will find it is an actual cancer, pre-invasive yes but real all the same!  And many, many doc's are still in the mode of recommending bi-laterals for this "disease you do not have".  Also this is not very supportive - especially when you consider this is a support group!  Lisamg IS "faced with the most confusing, contradictory, discordant information onthe plant".  The fear you suggest IS occurring within Lisamg and it is real..  Please be careful how you approach people here - this is dismissive at best and not helpful to another human experiencing a very real dilemia IMO...  Please be careful with other's feelings..  Deirdre

to add to the discussion.

From: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

It is important to note, however, that most research related to BRCA1 and BRCA2 has been done on large families with many individuals affected by cancer. Estimates of breast and ovarian cancer risk associated with BRCA1 and BRCA2 mutations have been calculated from studies of these families. Because family members share a proportion of their genes and, often, their environment, it is possible that the large number of cancer cases seen in these families may be due in part to other genetic or environmental factors. Therefore, risk estimates that are based on families with many affected members may not accurately reflect the levels of risk for BRCA1 and BRCA2 mutation carriers in the general population. In addition, no data are available from long-term studies of the general population comparing cancer risk in women who have harmful BRCA1 or BRCA2 mutations with women who do not have such mutations. Therefore, the percentages given above are estimates that may change as more data become available.

and question # 9 & 10

What does a negative BRCA1 or BRCA2 test result mean?

How a negative test result will be interpreted depends on whether or not someone in the tested person's family is known to carry a harmful BRCA1 or BRCA2 mutation. If someone in the family has a known mutation, testing other family members for the same mutation can provide information about their cancer risk. If a person tests negative for a known mutation in his or her family, it is unlikely that they have an inherited susceptibility to cancer associated with BRCA1 or BRCA2. Such a test result is called a "true negative." Having a true negative test result does not mean that a person will not develop cancer; it means that the person's risk of cancer is probably the same as that of people in the general population.

In cases in which a family has a history of breast and/or ovarian cancer and no known mutation in BRCA1 or BRCA2 has been previously identified, a negative test result is not informative. It is not possible to tell whether an individual has a harmful BRCA1 or BRCA2 mutation that was not detected by testing (a "false negative") or whether the result is a true negative. In addition, it is possible for people to have a mutation in a gene other than BRCA1 or BRCA2 that increases their cancer risk but is not detectable by the test(s) used.

What does an ambiguous BRCA1 or BRCA2 test result mean?

If genetic testing shows a change in BRCA1 or BRCA2 that has not been previously associated with cancer in other people, the person's test result may be interpreted as "ambiguous" (uncertain). One study found that 10 percent of women who underwent BRCA1 and BRCA2 mutation testing had this type of ambiguous result (16).

Because everyone has genetic differences that are not associated with an increased risk of disease, it is sometimes not known whether a specific DNA change affects a person's risk of developing cancer. As more research is conducted and more people are tested for BRCA1 or BRCA2 changes, scientists will learn more about these changes and cancer risk.

It seems possible to me they are doing a BART test on you.  This is an extra level of testing for high risk people with negative BRAC12 results.  Usually they can use the same blood they drew for the first test (depending on how much time passed).  They should be able to do this well before your surgery date.  Request a rush.  Myriad is the company that does these and it can be pushed.  See this.  I would insist on the result before surgery as it makes a difference.

http://investor.myriad.com/releasedetail.cfm?releaseid=325803