CureTalk Interview: Gayle, Previvor Talks Double- Mastectomy, Breast Re-construction and BRCA+

 

CureTalk Interview: Gayle previvor talks about breast mastectomy, breast re-construction and living life.

Gayle is a previvor. Which means that she does not have cancer, but learnt very early on that she is carries BRCA2, the same DNA mutation which took her mother’s life 13 1/2 years ago. Grit and fearlessness is what epitomize Gayle. The BRCA+ result refused to back her down, and she is a living example of how the right information makes one live life better.

Me: You were diagnosed in early 2011, you carry the BRCA2 gene. What made you undergo the gene test?

Gayle: I suspected for years that I was BRCA+.  My mom was never tested, but her cancer was very aggressive.  A few years after she passed away, we learned that BRCA2 does in fact run on her side of the family.

Because of the nature of her cancer, it was very, very likely she was positive for BRCA2.  I thought about getting tested throughout my 20s, but was very nervous and almost no information about what could be done if I tested positive.  I avoided the BRACAnalysis until the end of 2010, when I was in a serious relationship, and the topic of marriage was being discussed.

He urged me to get the test done, because he couldn’t stand not knowing.  In my mind, I already *knew* I was positive, just a gut feeling I had, so when I got the results I wasn’t surprised.  I am glad that he urged me to get tested, though, because I was so, so uneducated about what options are available to previvors!

Me: What made you share your story?

Gayle: As I learned more and more about genetic cancer risk, the known (and unknown) DNA mutations, and the advances being made every day, I also learned how uneducated so many women (and many doctors, unfortunately) are about their own risk, what the test is, and how to be proactive with their health.

I spent most of my 20s avoiding getting tested because I was afraid of the inevitable, and thought finding out I was positive would mean I would just sit around and wait to get cancer — but that couldn’t be further from the truth.

I want to share as much as I know with as many women as possible, so no one else has to go through years of fear like I did.

I wrote a blog post about why I’m sharing my story here.

Me:  A double mastectomy. Were there any fears that you harbored? Did you explore other options before opting for mastectomy?

Gayle: Honestly, I wasn’t afraid of the mastectomy, I was READY for it.  I had decided years ago that if I ever had an opportunity to have a mastectomy, I would.

Obviously, seeing my mom lose her life to what started as breast cancer (and spread) had a major impact on how I saw my own body.  I saw my breasts as ticking time bombs, not a benign body part.  When I learned I am BRCA2+, I didn’t have to spend time thinking or deciding — I had done that years ago, and was ready to take action.

I didn’t explore other options for the purpose of avoiding or delaying mastectomy, but being the very curious-minded and information-seeking person that I am, I like to know everything about everything.

I learned about chemoprevention, early detection through increased surveillance, etc.  I never considered those options for myself; in fact, learning about them only confirmed my decision to go through with mastectomy even more.  I am glad that I educated myself about all options, though, because I have been more equipped to answer other women’s questions as they hear my story and want to know more.

Me: Breast reconstruction, is that a must to do after a double mastectomy? What was the procedure that you opted for? Any side effects or difficulties that you faced? 

Gayle: Breast reconstruction is a very, very personal decision.  Is it a “must do”?  No, it’s not.  At least, physically it’s not.  Mentally, it depends on the woman.  I have met women in online support/discussion forums who are my age, who decided not to undergo reconstruction, and are happy with their “flat” results.  And having gone through reconstruction, I can understand why people would opt against it — it is PAINFUL.

However, for me, having this done at age 29, I knew I wanted to look as aesthetically close to natural as possible, and I would not have been pleased with no reconstruction.  If I were making this decision much later in life, I may have opted for mastectomy without reconstruction.

There are so many different kinds of reconstruction.  I opted for skin sparing, nipple sparing with silicon gel round implants in 2011.  At the time, my plastic surgeon used 755 CC implants, which were close to my natural size.  However, in October 2013, I underwent a revision, and he replaced those implants with 425 CC teardrop, cohesive gel implants.  I am smaller, and these are much more comfortable, for me personally.  My surgeon did a fantastic job, and I am very, very pleased with the results from each of the surgeries he performed on me.

I will say, though, that since I went the “implant route,” I do have a little bit of rippling, which is just being able to slightly see the implant’s shape through the skin.  This does not bother me, especially now with my smaller size, but with the larger implants it was something that bothered me quite a bit, and one of the deciding factors that contributed to me going through with the October 2013 revision.

The only other thing that I have noticed is the strength and movement of my pectoral muscles, as they are positioned differently with implants underneath them.  I work out quite a bit, especially strength training, and I have to be careful not to over train my chest muscles.  As long as I do plenty of rowing and other back exercises, my posture remains good, but if I overdo it on chest strength training movements, my shoulders tend to pull forward a bit.

Me:  Is there any current treatment regime that you have?

Gayle: Nothing right now.

Me:  A cancer previvor with double mastectomy; that’s a unique combination. Any concerns about life and having a family that cross your mind?

Gayle: At first, dating was a little awkward for me, since I am currently not married nor in a serious relationship.  However, as I became more comfortable with my decision and my “new” body, it became easier to explain, and no longer awkward.

It does cross my mind, however, that I still have my ovaries, and will eventually have to make a decision about whether or not to have them removed.  I still have a few years before I really need to start thinking about that.  I hope that by that time, I will have met someone and we will be able to plan our family together.  However, I live by the motto “One Day At A Time” so today is not the day for me to worry about that.

Me: Any special lifestyle changes incorporated ever since you became a previvor?

Gayle: I became a vegetarian, and eat 95% vegan.  I do not drink alcohol (ever), and I work out 4-6 times per week.  I also manage my stress better (yoga, reading the Bible, prayer).

Me:  What advice/ suggestion would you like to share with readers who are currently in the danger zone area, being previvors?

Gayle: I am assuming by “danger zone” you mean previvors who have not taken action yet.  My recommendation is, get educated.  Get educated, and make the decision for what action to take that is best for YOU.  Not your mom or your sister or your husband — YOU.  Talk to a genetic counselor, find another previvor to talk to (Bright Pink has a program called Pink Pals and can connect you with another previvor to talk to), and discuss your options with your OB/GYN or breast surgeon.  I also strongly recommend going to a licensed counselor to talk through feelings or fears that arise.

Family and friends can (and should) be supportive and understanding, but they have fears and feelings of their own.  Talking about it with a counselor, a neutral person, is something that I did NOT do when I was planning and recovering from surgery, and if I had to do it over again, I would have done some counseling sessions.

The piece of advice that I feel the most strongly about is, it’s okay to be scared.  Fear is natural, but a BRCA+ test result is not the end of life as you know it.  You WILL get through this, and it WILL be okay.  I am living proof of that!! 🙂

 

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