Thursday, 29 March 2012

My BRCA Timeline

So now that I can see the light and the end of this journey I can honestly, without a doubt, or any hesitation say that the waiting, the anxiety, and the anticipation involved in this process was the WORST! Seriously, it sucked. I am fairly confident that my timeline is significantly longer than most because of my added ticker troubles, making scheduling a logistical nightmare. But I wanted to share it with all my BRCA+ gals because I know how painful the waiting game can be, and if nothing else you can at least tell yourself you won't have to wait as long as I did! Ha!

Dec 27 2010 - Wow doesn't that date help put this journey into perspective. That is when we first learned about BRCA and it's deeply rooted genetic ties to my family. My mom came clean about her genetic test results while we (my sister and I) were all home over Christmas. She had made her choice to go through with both a preventative hysterectomy (because of BRCA 1's link to ovarian cancer) as well as a preventative mastectomy, but was still in the early stages of figuring out what that all meant for her. I knew immediately that I wanted to take the test and what I would do if it was positive, so I was referred to Princess Margaret's High Risk Breast Clinic ASAP.

Feb 14 2011 - I had my first meeting with the genetic counselor on Valentine's Day no less (Happy Valentine's Day to me!). I had made my choice to go ahead with a Prophylactic Bilateral Mastectomy (PBM) really before that option was even properly discussed, and once my counselor went over the stats for me I was completely sold. The idea of a PBM was actually not what I was worried about when I went to this meeting. I was much more worried about the risks for ovarian cancer and what that meant for our hopes of starting a family one day. Luckily ovarian cancer is not a disease that strikes women when they are young, so while they do recommend that I eventually have the hysterectomy performed, it was not something I would look at doing until approximately 40 and when all my baby-making is out of the way. I had my blood test done and was sent on my merry way.

April 4 2011 - This was the day I got that fateful phone call telling me that my results were in and I was in fact BRCA+. I wasn't surprised or even really that upset when I got the news. To be honest I was expecting to be positive. Genetics is not my strong suit and I have never had the best of luck medically, so I assumed that this would be very much the same. I am a rare breed with all kinds of strange anomalies and complications, so being BRCA+ was just status quo for me. I was prepare for these results and what it all meant.

April 8 2011 - Both my husband and I met with the genetic counselor to go over the results, although I don't really feel like we learned any new information. This meeting was just necessary for me to become connected with the High Risk Breast Team and so I could start the process to meet the doctors and surgeons responsible for my PBM.

June 13 2011 - I had my first screening appointment at the Breast Clinic and declared my desire to move forward with a PBM.

June 14 2011 - I met with Dr. Hofer my plastic surgeon to discuss my options and go over my complicated medical history.

June 28 2011 - I met with my Cardiologist and my pacemaker/defibrillator (ICD) team to discuss my latest test results and my plans to move forward with a PBM. We had to talk about the 2 Stage procedure vs Alloderm and how these options would affect my ICD. Everyone agreed that the Alloderm procedure was really the only option for me and my particular set of unique circumstances. But then I had to ensure I was able to have this procedure done, because Princess Margaret was only performing the Alloderm procedure on a trial basis and were collecting data for study. Luckily after several phone calls back and forth everyone agreed that for medical reasons I needed access to the Alloderm procedure, but would not be part of study (*insert sigh of relief*).

July 29 2011 - I had my first Mammogram done. Slightly stressful because I was worried that it might damage my ICD. But it all went well and it was not nearly as painful as advertised - albeit awkward!

August 3 2011 - I met with the plastic surgeon again, although this time with one of his interns to have all my measurements done and to finalize the details for my surgery. I stressed that I had scheduled a trip to Italy with my husband for the end of September, so the surgery needed to be schedule sometime after that.

August 23 2011 - I met with my 2nd surgeon - the doctor who would be performing the mastectomy portion of my surgery. It was an interesting day to say the least, but I'll let you read the blog post if you are interested, needless to say I ended up feeling more committed then ever before to this course of action.

(INSERT A LONG LULL) - After my appointment on August 23 I was left waiting and waiting and waiting for a surgery date. Admittedly they were trying to coordinate the schedules of 3 surgeons - the plastic surgeon, the surgeon who would perform the mastectomy, and my cardiologist - but I do think this wait time is ridiculous. I called to speak with the secretary who was meant to be coordinating everyone probably every 3 weeks, because the looming possibility of surgery was a dark cloud hanging over everything. I just wanted to date to plan my life around. I felt like I couldn't make any long term plans or commitments because I didn't know when this surgery would happen. It was incredibly frustrating.

January 5 2012 - I finally got a date! Woohoo! March 5th was decided and set.

February 8 2012 - I had to go back and be remeasured, it seems they had misplaced my measurements. Very frustrating because that is something I wanted to make sure they did right! I was feeling stressed at this point.

February 29 2012 - My pre-op appointment. It was very long!

March 5 2012 - Dday

This journey has be a long one and took over a year to complete. It was a total of 15 months from when I first learned about my possible BRCA connection until my surgery, and I still have several more weeks of recovery to go. For me the waiting, the scheduling, and the not knowing were much harder than facing the actual results when it was all said and done. I have always been honest about my Type-A tendencies, so I was difficult for me to leave my fate in someone else's hands and live according to someone else's schedule.

But for those of you who are still playing the waiting game - I want you to know that it was so worth it. I am really happy with the physical results and more than anything else I am extremely happy with the mental results. I feel like I took control of my health and my life - and that was definitely worth the wait!

Love Your Favourite Darwinian Fail,
Krysten