My name is Sue. This is my story.
My mother’s side of the family has a history of breast and ovarian cancer. My mother (diagnosed aged 49, died aged 54) and aunt (diagnosed aged 31, died aged 35) died from breast cancer and my cousin (diagnosed aged 31, died aged 33) from ovarian cancer. My family is quite small so this was regarded as a significant number of blood relatives to be affected by breast and ovarian cancer who had been diagnosed under the age of 50.
Given my family history my GP referred me to the Hereditary Cancer Clinic at The Prince of Wales Hospital NSW to see a Genetic Counsellor to have my risk assessed. My husband and I did this in 2001 and my risk was assessed as high based on my family health history.
The Genetic Counsellor advised that I could do the BRCA test (like any women can) but it would more than likely come back inconclusive. The most accurate way to identify if a faulty BRCA gene is present in a healthy person is to have a family member that has been affected by cancer tested first, and test positive. Unfortunately none of my family members that had had cancer were alive. My husband and I agreed doing the BRCA test wasn’t useful for me. Also many women who are high risk are from families that do not have the BRCA gene fault but rather a significant family history of breast and ovarian cancer indicating a gene fault not yet identified or a gene fault specific to that family (also not yet identified).
In 2010 I returned to see the Genetic Counsellor to see if my risk could be more accurately assessed and if there were any new developments in regards to faulty genes related to breast and ovarian cancer. At this appointment I was told based on the information about me, my family and current research I had a 25%-30% chance of developing breast cancer and around a 10% chance of developing ovarian cancer.
Both the Genetic Counsellor and my Breast Surgeon (I had been seeing a Breast Surgeon each year since 2001 as part of my annual screening regime) gave me all the information on my two options – continue annual screening (mammogram, breast ultrasound and MRI tests and check up with Breast Surgeon), take risk reducing medication or undergo preventative surgery. The decision on which option I wanted to follow was entirely mine.
I could have continued with the screening (which I had been doing since 1995) with the purpose being to find any abnormalities early and therefore having the best chance of a successful outcome. However the screening would not prevent me from getting breast cancer. The only way to prevent getting breast cancer was to have all my breast tissue removed, a bilateral mastectomy.
When my risk was assessed at 25% -30% that made a big difference for me – previous to that it was high risk but that wasn’t quantified. Then a few things came together that pushed me to make a decision.
In 2011 several lumps where found during my annual screening and I had to have core biopsies. The lumps were benign and very small so proved my screening regime was working. However it made me realize that the screening was just going to find something early. I would still have cancer which would mean surgery and chemotherapy/radiotherapy/medication. Then if I was successful in treating the cancer I would still have the worry of it returning (as it had for all my family members – as aggressive secondary cancer) and need to continue with screening each year. It all suddenly seemed that the control I wanted was not going to be achieved by annual screening.
Through my regular screening I was always aware surgery was an option. In fact we first had an appointment with the Plastic Surgeon in 2004 to explore the preventative surgery options. I had always thought I would probably go ahead with it after completing our family/deciding not to have a family. Making the actual decision to go ahead was quite difficult. It is hard to put yourself through something to avoid something that has a 25%-30% chance of happening. My husband was unbelievably patient, logical and supportive. It was my decision to make and I had to work out if I could live with the cancer risk and how would I feel if I had the opportunity to remove this risk but had not and then got cancer. The answer for me was that I couldn’t.
In March 2012 I had my preventative nipple sparing bilateral mastectomy with expanders. In July 2012 I had the expanders removed and implants inserted. The decision to have the surgery was extremely difficult but the relief and peace having the surgery gave me is enormous. I feel I have taken control of my situation and that I have removed the burden of constant worry and the feeling that one day I was probably going to get breast cancer and die from it.
In November 2012 my cousin on my mother’s side of the family (it was her mother who died from breast cancer and her sister who died from ovarian cancer) was diagnosed with breast cancer. Unlike my other relatives she was older being in her mid 50s. She undertook genetic testing for the BRCA1 and BRCA2 gene faults which came back negative.
Even though my cousin tested negative for the BRCA gene faults this didn’t change my risk as the Genetic Counsellor had calculated this risk based on my family history, including number of relatives, their age of diagnosis and death, and type of breast and ovarian cancers.
In June 2013 I had a salpingectomy (removal of my fallopian tubes) as some studies have indicated that some ovarian cancer starts in the fallopian tubes. My Oncologist-Gynecologist agreed with this strategy for reducing my ovarian cancer risk given my family health history.
I am thankful that my mother was open in her discussions with my sister and I about her cancer and our family health history and even back in 1995 was researching and reading about family based cancers. She always felt we had a family based cancer and encouraged my sister and I to undertake screening, lead a healthy and active lifestyle and be proactive in preventing cancer.