October Member of the Month – Sue Jones

Sue JonesMy name is Sue Jones and my mother’s side of my 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. My husband and I visited them in 2001 and then again to 2010 to see if any of the new gene discoveries/scientific advancements/studies that could help me more accurately assess my risk level, any recommendations for different screening, medication, surgery etc.

The Clinic said I could do the BRCA tests (like any women can) but if they came back negative it would mean that there is highly likely a mutant gene specific to my family. To identify this gene a person who has had cancer but survived is needed, of which there is no one in my family. My husband and I agreed doing the BRCA test wasn’t useful for me because if it came back negative my situation hadn’t changed – my family risk still existed. The Clinic then using a sophisticated computer system – including studies, my history etc. predicted that I had a 25% chance of developing breast cancer and a 9% chance of developing ovarian cancer.

Both the Hereditary Cancer Clinic 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) 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% that made a big difference. 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 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% 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 25% 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.

I plan to have a salpingectomy in early 2013 to reduce my risk of ovarian cancer.

I am thankful that my Mother was open in her discussions with my sister and I about her cancer and our family 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.