By Guest Blogger Karen Malkin Lazarovitz
I was diagnosed with a BRCA2 gene mutation (breast and ovarian cancer gene) in December 2008. My lifetime risk of developing breast cancer was 87%, my risk of ovarian cancer; 45%. Now, I ask you, if you knew your chance of winning the lotto was 87%, how often would you buy a ticket? Or if the pilot on your flight told you that you had an 87% chance of crashing, would you board?
That’s how I felt. No cancer, but stuck between a rock and a hard place. This disease had already claimed so many of my family members; I couldn’t let it get me too. Finding out I had this mutated gene gave me no choice but to take control and deal cancer a pre-emptive strike! I was going to do my best to prevent it as scary as it might be. I wanted to live a long life and be there for my children, my husband and myself.
My decision to undergo preventative surgeries was a no brainer for me. I didn’t even consider it a choice. The cancer risks for me were too high. The buildup to the surgery, however, was quite scary, much worse than I ever imagined it to be. The fear of the unknown is always daunting and going into a hospital HEALTHY for surgery is a hard thing to wrap your mind around.
On February 10th 2009 at the age of 34, with the support of my loving family, I underwent a preventative hysterectomy. The surgery was successful and my pathology reports came back free of cancer.
I wish I could say that was the end of my story, but breast cancer lurked in the background ready to rear its ugly head. So with that said, the second part of my journey began.
I was petrified of waking up in pain, afraid to see my chest, afraid of not feeling whole, afraid of everything you imagine when faced with an amputation of a body part. The logical part of me knew it was the right decision but the vanity part of me was having a hard time. That being said, nothing was going to change my mind. I was going to be here for my children and husband and most importantly myself.
On April 30 2009, I had a PBM (prophylactic double mastectomy) with reconstruction. A fancy word for amputating both breasts (nipples and areolas included). I began the process six weeks later to rebuild my new breasts or foobs (fake boobs) as many women who have this surgery call them. Heck, I was the real-life Angelina Jolie!
There was not enough room for implants to be inserted right away. The plastic surgeon inserted tissue expanders (empty silicone bags) under the skin and pectoral muscles and a saline liquid was gradually injected into the expanders over a period six long and painful months. This allowed the skin to be stretched and then replaced with permanent breast implants at a later date.
On October 22, 2009, I had my final surgery to remove the tissue expanders and replace them with silicone implants. It was the first time I was actually getting something back. With the first two surgeries, I gave up my ovaries, fallopian tubes, cervix, uterus, breasts and nipples, now I was getting back a part of myself that I had lost. The surgery was successful (or so I thought) and I was happy to put it all behind me.
Unfortunately, I had many complications and needed 2 additional surgeries during 2010 to try and fix the problems; nothing worked. My plastic surgeon was stumped. I knew I was going to have to go through yet another surgery with a new surgeon if the problem was ever going to be fixed.
In January of 2011 I met a brand new plastic surgeon who assured me that he could help. He put my mind at ease and I really did trust him. He promised me that he would be able to fix a lot of the problems that had occurred over the last two years and 4 surgeries. He made good on his promise! I have been surgery free since that time. My chest doesn’t look like I imagined it to be but it’s okay and I’m fine with that. I am healthy and I don’t live in fear of cancer anymore.
I have no regrets about my journey, complications and all. It has brought me to where I am today and I am proud of my decisions and confident that I will be here for a long, long time.
When I found out about this BRCA gene, no one was talking about it so I decided to start the BRCA Sisterhood support group on Facebook, with a good friend of mine. I am proud to say that since we started it 4 years ago, we have almost 4000 members from all over the world.
This brings me to the next step in my journey. I am partnering with Rachel Silva-Smith, a 2nd year genetic counselling student at McGill University who also works at the Jewish General Hospital in cancer genetics. Together we are starting BRCA CHAT Montreal, a women’s only support for those dealing with hereditary breast and ovarian cancers.
So, that is my story. I have no regrets and I am really proud of myself. I just wish I could eliminate the chances of my children inheriting this gene. I hope that in the near future there will be other options so women won’t need to remove healthy body parts but until then, BRCA CHAT Montreal will be a place to go for support.
Much love,
Karen Malkin Lazarovitz
Karen,
Bravo to you for proactively saving your own life. I’m proud to be your BRCA sister!
One comment: Until I started doing the research for my own PBM, I had no idea what was involved in a mastectomy or reconstruction. Having now been down that road, I wouldn’t necessarily refer to it as an amputation, but rather as a “breast replacement.” In your case, the breast tissue was replaced with implants. In my case, it was replaced with fat, tissue and blood supply from my abdomen. In neither case did we lose the skin that covers the tissue.
I wish you all the best with BRCA CHAT Montreal, and many years of continued good health!
~ Jane.
Karen you are so brave. Your husband and children need you to be there and healthy for them. I can’t image your decision was an easy one.
Hi Paula,
Thank you for the kind wishes. I really appreciate it. Truthfully for me, the decision was easy knowing my family history, it was the actual surgeries that really frightened me. Thankfully I had an amazing support system filled
Fondly,
Karen 🙂
Hi Jane,
Nice to meet a fellow BRCA sista 😉
I refer to it as an amputation for myself because I no longer have any feeling in my chest and I did not keep my nipples or areolas. As well, I don’t have any of my own tissue in my chest, I have a silicone bag. I have become very removed from my chest. Since my mastectomy, I am comfortable with them but I don’t really see them as breasts anymore. I completely understanding you referring to it as a breast replacement. 🙂
I hope you are healthy and well.
Much love to you
Fondly,
Karen