My BRCA Journey and Results

 Recovery and Results - My Thoughts and Feelings

Relaxing Post-op + Happy
Okay, let's be honest BRCA gals this is the probably the information you REALLY want. I know this is the information I spent hours scowering the internet for. And I know I would be doing my fellow BRCA girls a disservice if I didn't give you all a real and candid account addressing my results and recovery process. So, without further adieu...let's get started!
I have been very honest about my struggle to accept the impending changes to my body. And my concerns about the toll this decision would take on my body image and self esteem. I think facing what the results will really mean is a HUGE battle for most BRCA women. I can still vividly remember the day I googled images of the post-op Prophylactic Bilateral Mastectomy and realized that I was not going to have nipples. I was inconsolable and was in full on melt down mode in the middle of the university library. I was by all accounts a hot mess. This stirred up so many feelings and questions about my femininity, my sexuality, and my self worth. I felt lost, confused, and more than anything else sad.
I think that day was the day that reality finally set it. I realized that there was no great option as a BRCA gal. Your choice is essentially - willing self-mutilation or face an eventual positive cancer diagnosis. Not a great reality. Not great at all. (*sigh*)

But (yes there is a but) because I faced that reality, and truly embraced this process the good and the bad - I realized how committed I truly was to my health. This wasn't an easy choice but it was the choice I still wanted to make when I laid it all on the table. That is how I knew I was doing the right thing for me.

That all being said...I was still terrified about how I would actually feel when I woke from my drug enduced sleep to face the results. I thought I would struggle to embrace the changes at first. I assumed that the first few weeks of recovery would be a little dark. That I would likely experience a period of mourning, but would eventually move on. I tried to be honest with myself and realistic about my expectations.

Truthfully though, I woke up Monday afternoon, peaked under my gown, and was just so damn happy that this process was over. These new nipple-less implants were now just a part of me. They are a part of my new happy and healthy life. And while my journey has been a very long and emotional one - I have learned a lot about self love.

The fear, anxiety, and anticipation I experienced pre-op was based on an idea that once I changed this part of my body that something pivotal to my sense of self would be lost. But when I woke up post-op I was still me. My life was still my life. My goals were still my goals. My family and friends were still loving and supportive. My husband still adored me and even still thinks I am pretty cute. The only thing that had really changed (besides the nipples) was that I was no longer at risk of Breast Cancer.

Note: Below are my After pictures. This is as exposed and as real as I am willing to get because I blog under my real name and my Dad reads my blog. But there are some amazing resources and women who are willing to be much more real than I am so if you want to see how everything will really look post-op I recommend checking out Amanda at BRCA and Me, the resources at Be Bright Pink, and the beautiful and inspiring images on display at The Scar Project.
My After Images



So while I still see a person that is healing and my set of fresh scars when I look in the mirror.
I also see I girl who is in charge of her body.
I see a girl who loves her body because she knows how hard she worked to get to this point.
I see a girl who is strong physically and mentally.
I see a girl who is happy.
I see a girl who is thankful and grateful.
I see a girl who has big dreams and a great life - and knows it.
I see a girl who has her whole life ahead of her and lots of living to do.
And most importantly I see a girl who is cancer-free and completely in control of her health.


Love Your Favourite Darwinian Fail,
Krysten

BRCA - Surgery Type and Expections

So any BRCA+ gal knows that there are a whole bunch of surgery options available if you decide to go with a prophylactic bilateral mastectomy (PBM), which can be daunting and confusing all at the same time. I was presented with 3 possible options...

DIEP Reconstruction - This is by far the most invasive of all the procedures, but a good way to sneak in a tummy tuck! In this procedure all of your breast issue is removed, including the skin, and fat/skin from another part of your body is transplanted and used to reconstruct the breast. They can use various parts of your body - the tummy being most popular. But they can also use tissue from your back or thighs. It sounds good in theory, but a specific body type is required for this. AKA you must have enough tissue/fat at one particular site to rebuild your breast.You will also have 2 major incision sites.

Note: This was not an option for me because of my size, but can be great option for other women. The recovery is a lot longer, however.

2 Stage Mastectomy and Implant Reconstruction - This is generally the most common option for PBM and it requires 2 surgeries. Because BRCA+ women are not getting breast implants for kicks or *cough*  vanity we are not adding implants to already existing breast tissue. So the implant needs to go underneath the muscle because the skin is obviously not thick/strong enough to support its weight. During surgery #1 the mastectomy is preformed, and a temporary un-inflated implant is placed under the muscle. The muscle wall is not big enough to accommodate a full implant right from the get go. So over the next few months you have to go back and forth to the doctor's for regular "fill-ups" to gradually inflate the implants. Each implant has a port where saline can be injected to stretch out the chest muscle. Once the desired pocket has been made and healed, a second surgery is scheduled and the final implant is implanted.

Note: The port used to mark the injection site is magnetic, so not an option for my little cyborg heart. My pacemaker/defibrillator does not get along with magnets, and would have stopped functioning as a result. In other words no thanks! If its not one thing its another ha!

Prophylactic Mastectomy with Alloderm Reconstruction - So this is obviously the surgery type I chose. Third option is always the charm. It is very similar to the 2 Stage procedure, expect that everything is done at once with the help of Alloderm tissue. The implant obviously still needs to go under the muscle so the plastic surgeon uses a type of donated tissue (known as Alloderm) to expand the chest wall and create the necessary pocket immediately. 
I used paint to create this little gem!

The implant is placed, everything gets stitched back together, and Viola! The muscle eventually heals and integrates itself with the alloderm - absorbing it as part of the body. It is actually amazing medical science and another reason to check that box on your health card and become an organ donor!

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I can only talk about my experience with my chosen procedure, but I have been really happy with the results so far. Here is what to expect...
  • This is a one shot deal. One surgery. One recovery. And you are all set!
  • Everything is pretty swollen, and they have said to expect that it will remain that way for 6-8 weeks!
  • For some reason when the full implants are placed there tends to be more bleeding, aka you will need to have those stupid drains for longer (7-10 days is typical. I had mine for 10. BLAH!)
  • They also say recovery for this type of surgery is longer than the 2 stage - anywhere from 8-12 wks. I don't know why exactly?!
  • Because you get your final implants right away you never experience having no breasts, which can be very traumatizing for some women. You go to sleep with your breasts and wake up with your new fake ones!
  • The Alloderm site is tight and kind of itchy
  • You have less of an opportunity to decide exactly how everything will look in the end - a HUGE source of anxiety for me. With 2 stage the "fill-up" process is gradual, so you have the opportunity to say if you are happy with more or less. The 2nd surgery also offers an opportunity to revise the scars if you need to. Whereas with the Alloderm procedure - what you wake up with is what you get.
  • That being said I stressed how I wanted things to look (aka as much like myself as possible) and I think they look pretty darn good so far!
As always please feel free to ask any questions I didn't answer. You can always email me if you want it to be more discreet or you have lots to say!

Love Your Favourite Darwinian Fail,
Krysten
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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
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2 comments:

  1. Wow Krysten! This is amazing. I was scared for a little while, as my Dad tested positive carrying the BRCA 2 gene. Both his Mom and Dad had breast cancer. I had a 50/50 chance of having the gene and luckily tested negative. My Aunt wasn't so lucky. She's going to have a double mastectomy. It has been scheduled for October. I'm not sure she has enough fat on her little body for reconstruction, as she is also an athlete and probably around 12-13% body fat. I'm not sure she cares much either about reconstruction. She was just happy that I won out on the genetic lottery she said. Ugh....but I can't imagine going through what you've been through with cardiac problems and testing positive for the BRCA ! gene. You are truly amazing...keep running and keep blogging!!!!!!

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  2. Krysten

    I can not tell you how happy I am to have found your site. I too have been plagued with the BRAC 2 gene. My mother was diagnosed with stage 4 ovarian cancer at 45. I wanted my ovaries out ASAP when I found out that I had the same gene as her. I have been contemplating on have mastectomy, but not to sure when to due it. I also suffer the fear of loosing my woman when I have the surgery. Thank you for putting such a positive spin on it. I love how you embarrassed and chose your destiny.
    Thank you

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