22 Sep How I Lost My Lady Parts But Gained So Much More
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.
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.
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.
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.
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
Teri Smieja
Posted at 09:31h, 22 SeptemberKaren has done so much for the BRCA community over the years, and for that we all owe her a huge debt of gratitude. Taking it a big step further with this new in-person support group is going to help even more people. What a wonderful thing to do! Karen is an inspiration!
Karen Malkin-Lazarovitz
Posted at 14:58h, 15 OctoberThank you so much Teri, it means so much xo
Lisa Edwards
Posted at 15:47h, 22 SeptemberKaren is a true inspiration! I’ve had the pleasure of meeting her through our mutations and I look forward to many cancer-free years with her! So proud of you!
Anne Wajcer
Posted at 08:58h, 23 SeptemberLooking forward to meeting you and being part of this group.
Much needed!
Karen Malkin-Lazarovitz
Posted at 14:58h, 15 OctoberThanks Lisa, xo
Karen Malkin-Lazarovitz
Posted at 14:59h, 15 OctoberIt was a pleasure meeting you Anne 🙂