In 2013, an estimated 232,340 new cases of invasive breast cancer were expected to be diagnosed among US women, as well as an estimated 64,640 additional cases of in situ breast cancer. In Europe 458,337 women were diagnosed with breast cancer in 2012. The mortality rate was 23,1 %. The numbers speak for themselves. Today is the beginning of National Hereditary Breast and Ovarian Cancer (HBOC) week. I have met a wonderful Canadian lady last year, Bolette Bossen, who gave an amazing speech for enhancing breast cancer awareness in Mexico City. Bolette was sharing her own story with the world. I am reposting her story now, because it is more than just a personal story. It is a true story. It is an incredible brave story, which tells you, that it can happen to anyone and that there are ways to fight it.
Please read it with an open heart and an open mind. Spread the world. Be aware. It is essential to talk about this matter. Educate ourselves. Go to regular checks.
"Good morning everyone. My name is Bolette and before I begin I want to thank Tricia and the Charity Coalition for encouraging me to give a short talk today. My story is a little bit different but I think it is still an important one.
I have never had cancer but I have seen first hand how devastating it can be.
My story begins when I was 12. My mom went in for an operation to remove what the doctor’s thought was a benign cyst but turned out to be an ovarian tumor the size of a small football. She had had no symptoms except for slight bloating in her stomach. She was given 6 months to live and she was just 40 years old.My parents never told me that she had been given 6 months to live. I am happy they didn’t because she ended up fighting through 5 years, some good some bad, and passed away peacefully in her sleep on April 16, 1993. I was 17 and about to graduate from high school.
My dad is a veterinarian so a scientist at heart. My mom’s early death was always puzzling to him and with more and more research being done on the BRCA 1 and 2 genes he began to connect the dots. My mom’s family is of Jewish decent and there were many women on her side of the family that had died at a young age but we did not know from what because it was back in the early 1900’s. However, based on these few facts my dad encouraged me to get tested for the BRCA mutations. Time passed, I finished university, I met my future husband, I moved around the country but every so often he would remind me that I should go and see a genetic counselor.
Finally in 2005 I was living in Toronto and I decided it was time. I was able to join in a research trial, met with the genetic counselor and had the testing done. Based on my family history I was given a 20% chance of having a mutation. It turns out I was BRCA1+. I was 30 years old and would have an 88% lifetime chance of getting breast cancer and a 45% chance of ovarian cancer. To me those were not good odds and I knew in my heart that I would eventually take any measure possible to reduce my risks, but I was only 30 and I was getting married and I knew I wanted to have children. I still had time.
Fast forward to 2010. I’m happily married with 2 young boys who incidentally were both born on April 17th, 2 years apart and one day after the anniversary date of my mom’s death. I had finally decided it was time to move forward with some serious preventative steps above and beyond the very stressful bi-annual mammograms, MRI’s and CA125 tests. For me the most important was to have my ovaries removed first. To me they were the biggest threat because I had seen first hand what could happen.
Luckily at the time we were living close to one of the most prestigious facilities in the US so I began to set up numerous appointments and started the process. On May 5, 2010 I had a laparoscopic oophorectomy where they removed my ovaries and fallopian tubes. I have no scars, there was minimal pain and I felt nothing but relief. Even better news was that my pathology came back clean. There are always risks associated with surgery but for me my peace of mind outweighed the risks. I am now on hormone replacement therapy for the for seeable future until I reach the age of natural menopause.
While in the US I was also set to have a prophylactic double mastectomy. I had doctors lined up and the procedure picked but a sudden move back to Canada meant I had to start the process over again. Luckily my genetic counselor from 2005 was able to give me the names of 2 very capable and lovely doctors. On Oct 4, 2011 I underwent a prophylactic double mastectomy. The procedure I opted for is called a one-step, which means that they remove all of your breast tissue and immediately insert an implant so that you wake up with full breasts. I was very lucky. My surgery went smoothly and I had very little pain and no complications.
To this day I don’t regret any of the decisions I have made on my journey. I have reduced my risks to lower than the general population, I still love my body, I have a supportive husband and family and I know with almost certainty that I will be there for my kids when they graduate or at least I will know that I have done everything in my power to be there."