age 18 brca2 + decision time ladies

Laurabeckham

I have an amazing technique for keeping a light spin on things so thats what ill do! This silly little gene has shown itself in 9 of my relatives, 8 of them have been diagnosed and 3 of them have sadly passed away. Now my turn for testing day has ben and gone and i am not in the least surprised to announce that i am infanct BRCA2 +

I am aware that i am very young to be making such adecision, the way im looking at it is i have alot of time to decide. my mother was diagnosed at 31 and sadly passed away 3 years later. I have been given 2 choices i can either wait till im 30 for regular mammograms (which if you ask me is pushing it a bit close) or i can go for the preventive surgery.

PROBLEM IS I HAVE NO IDEA WHAT TO EXPECT!!!! has anyone had this done????

Fidelia

dear Laurabeckham - things have improved a lot since your mother passed away - which is little comfort for you and none for her and her older relatives. As you assess your options - I think it is important to consult with a very reputable plastic surgeon because the only surgical prevention is mastectomy. You also really need to discuss the implications of this genetic defect in relation to you with an oncologist - actually - I would suggest more than one - you need someone who has dealt with many presentations of this sort of case to be able to advise you on all the issues - whether this defect includes higher risk of ovarian cancer as well or whether it has presented solely as breast cancer in your relatives - it is an awful lot of things to consider especially right now - but best to be on the front foot - most of the preventive treatments have implications on fertility as well as the obvious impact of having breasts removed/replaces as a preventive measure. The breast surgery while traumatic is probably the easiest procedure to organise and recover from - though reconstruction is a long haul and not without challenges - the most serious thing though is managing your plan for the future in respect of having children - preventing breast cancer is a key goal - but doing it and leaving yourself as many options as young women without the genetic tendency requires assistance from real experts - luckily you have the time to find them and get help with your stratgies - all the best for the future

Fidelia

LISAMG

Laura,

Sorry to hear of your BRCA+ status. However, you seem far more mature and knowledgeable than most young women your age. You have also been given the new knowledge of your genetic predisposition that your Mom never had. Be gentle to yourself!! Take time to digest all this info. as knowledge is power. You may wish to consider sonograms and annual breast MRI's when you reach 21, since this would be 10 yrs prior to your mom's diagnosis. Seek the advice of your genetic counselor, the most up-to-date professionals to help you.

Visit the FORCE web site too!! www.facingourrisk.org , the only organization in the USA devoted to hereditary breast/ovarian cancers. You will find tons of support and a young previvor's forum. Another fabulous organization devoted specifically for young women facing decisions and seeking suport like you is www.bebrightpink.org . Hope this helps. Best wishes to YOU.

Lisa

lilith

Hi Laura, 

Lisa gives good advice.

You see, you do have time to decide. You can wait a few years, and then go for a preventive surgery then (note that when boobs start sagging a bit, one may feel happier about doing a preventive surgery....). You could wait until 22 or 25, then do a check... and possibly reconsider the situation.

Many things may happen in the meanwhile. YOu may get married or not, have children... or decide you don't want to have any. All these considerations are relevants, as there are also links to Ovarian cancer, but of course you wouldn't want to take preventive steps for this at your age! 

Note that with preventive surgery, your reconstruction will be a LOT less challenging than what it is normally, after BC; your skin, your nipple will be intact, and it will be possible to consider implants in one step, without expantion or other nightmares! While on my cancer side the operation was a lot more important, when I had preventive on my "normal" side, it was a walk in the park all compared. I was on my feet within a day, drains out within 2 days, and normally functioning. The breast tissue was removed, leaving a limited scar. The results are very good, comparable to normal breast - only memory is the scar. 

I think you should talk in depth with a genetic oncologist, and take your time to understand what it means. You are so young to rush a decision! I will give exactly the same advice to my own daughter; she is 14, so of course she hasn't been tested, but I am BRCA2, and so is my mom. I hope the mutation has skipped her...