Its been a few days since I met with the genetic counselor. As I walked out of the appointment, I realized I will be ok. I have not been given a death sentence--Yes, I have increased chance of a few types of cancer but know what I can do to prevent that from happening.
So here are the stats:
87% chance of breast cancer
44% chance of ovarian cancer
7% chance of pancreatic cancer
If I am pretty drastic with my preventative measures, meaning surgically drastic, then my risk of of breast cancer goes down to 10% (same as the general population). I found out good news about my type of gene and ovarian cancer, also. It seems most of the cases of ovarian cancer that show up in BRCA 2 carriers are in women in their 40s and 50s...not 30s. So, the pressure to remove them is not high at this moment. When I do remove them my risk of breast cancer also improves to 6% (from 10%). The counselor actually advised against removing the ovaries for someone my age with two small children. Surgical menopause is not something I want to experience right now without a good reason. Obviously, the risk of pancreatic cancer isn't as high but it is drastically higher than the regulation population at 1%. Dan asked how we can be vigilant about my screenings for that and the response was that at this point they are doing research on how to "screen" for pancreatic cancer. Right now, the reason it is so deadly is because once you have symptoms the cancer is too far advanced and it is too late for treatment. Lets hope that the advances in pancreatic cancer screenings improve soon, for everyone's sake.
Dan and I had a lot of questions, we spent an hour and a half with the counselor and got a lot of answers. Though I could tell Dan's anxiety level was higher than mine, I think he also felt better after speaking with counselor. I did not get confirmation that diet can affect my risks. At this time there is not scientific proof that the two are linked, though obesity is a risk factor and we know that diet and obesity go hand in hand. So, Dan and I decided to be even more extra careful about what eat in this house. It will take some time to completely rid our house of some the "not so healthy" choices we make, but we have a good reason to follow through. As far as the kids goes, their chance for having the gene is 50% but there is no screening for them now. We need to go on about our life and making healthy choices for them with their diet and exercise level. Once they are mature enough to handle this process then we can let them know of their increased risks and talk about genetic testing. If Sean is positive, he would have a 20% chance of prostate cancer so obviously this gene is more harmful in girls. Ahh....my sweet Carter. I cannot see her go through this so lets all just hope that by the time she is my age, that breast cancer will be obsolete and they'll find a cure. As much research and money that is being poured into this disease, you would think in 20 years we would be able to put a stop to it.
I mentioned that I felt like a double mastectomy and reconstruction was the best most obvious choice for me, I think after having the appointment and hearing the statistics, I am 100% sure that is what I need to do. I need to be screened more often than the general population, which means every 6 months I have to have a mammogram and an internal ultra sound to monitor my ovaries, etc. I cannot sit by the phone every 6 months and wait, and wait, and wait for the bad news to come. That is no way to live. If I have the surgery I'll never even need another mammogram. I'll still have to have the ultra sounds for my ovaries but my risk for ovarian cancer is not that high, right now. I just feel like this is the best option for me. I know it seems drastic but I have done a lot of research lately about a double mastectomy and reconstruction so I do understand what I am getting in to. I know it will be hard, I know I won't be able to take care of my kids for a decent amount of time and there will a lot pain to go along with it. I asked the counselor point blank, given the drastic reduction in risk, it seems so simple...a double mastectomy is the only answer. She agreed.
Dan and I were able to get away and have a "date" night last night which was good timing.(thanks to a great friend who knew we needed some time) Though our conversations were that of the typical "date" night it was good to figure some things out. There is not really a great time to have something so drastic done to your body...so figuring out the timeline is difficult for us. I know I will need help with the kids so the summer seems logical...but then we have family vacations and all sorts of summer fun that would be dampened by that. So, in my opinion summer is not an option. I want to enjoy my time as a stay at home mom and do all the wonderful things that we are able to do. Fall is the top of my list but it isn't easy for Dan to take off a lot of time from school. We have two weeks off at Christmas but again, that would make it hard for me to enjoy my family time with the kids. I guess after I meet with the surgeon we will need to make a decision about the timeline of this surgery.
After speaking with some who've experienced the exact surgery it seems that the first few days are tough and he'd need to be very actively involved in my medical care. To spare your stomachs, I won't get too detailed but I asked him if he was ready for that? Will he be able handle seeing me like that? In pain, in a hospital? At least I have some time to help prepare him for that. Not sure any husband is really "ready" for something like this.
So, now the next step is my MRI screening in a few weeks, a consult with an oncologist (who usually sits in on the genetic counseling appointment) and a consult with the surgeon of my choice. The Dr. I already have has a great reputation for this type of surgery and so I'll plan to meet with him in the next few weeks. I have a lot of medical questions that I need answered. I know there will be some emotional stuff that goes along with changing my body in such a way but I feel like because it is MY choice, it will be easier (at least I hope so!). It isn't being forced on me, like those with cancer, like my mom, it is MY choice and I know what I am getting into and I know the payoffs make it well worth it.