11/03/2015 04:35 EST | Updated 11/03/2016 05:12 EDT

I'm Living With The Most Deadly Women's Cancer

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My story begins with everyone's worst nightmare. Following a wonderful career as a social worker, I was ready to move into a new and exciting phase of my life: retire from my job, travel the world with my husband, enjoy new experiences, and relish time spent with children and grandchildren. Unfortunately, 'life is what happens when you are busy making other plans.'

Following my retirement party in 2011, I almost immediately went into surgery for what had been diagnosed as ovarian cancer. I also discovered that I had a second, although small, breast tumour, which prompted genetic testing for a mutation. Turns out, I was BRCA1 positive. Lumpectomy and radiation were added to the treatment regimen.

Of course, the intricately planned retirement trip to Europe and Asia was cancelled.

This year, 2,800 Canadian women will be diagnosed with ovarian cancer and more than 1,700 will die from it. It is difficult to screen for ovarian cancer because there is no routine, simple test to accurately detect the disease. As a result, the majority of patients are diagnosed at a late stage, when treatment becomes more difficult and survival is typically less than five years, making ovarian cancer the most deadly women's cancer.

Several months prior to diagnosis, I had noticed that I was having some lower abdominal aches and pains. I was also experiencing some of the usual symptoms of ovarian cancer, including: frequent urination, multiple nighttime risings, and nausea. But, being post-menopausal, I dismissed many of these signs until the abdominal pains became persistent.

Since my gynecologist was on vacation, a follow-up with my GP immediately led to multiple investigative testing -- abdominal ultrasound, intravaginal ultrasound, colonoscopy -- all of which were negative. However an important blood marker, the CA 125, was significantly elevated, a signal that "something" was going on.

A month later, a second CA 125 test indicated a dramatic elevation. My GP immediately asked me if I had a contact in the oncology hospital system; it was time to use every card that I had at my disposal. Fortunately, I did have an excellent contact and was able to see a gynecologic oncologist/surgeon within three days. I underwent major debulking surgery soon after; the surgical oncologist was dismayed that I had waited as long as I had before getting diagnosed.

Given my present knowledge and experience, my preparedness for and reaction to a potential cancer diagnosis should have been different. My mother died of breast cancer at age 49, a high-risk alert signal for me. Although I had been aware of the availability of genetic testing, I was of the cohort who was still saying they "didn't want to know." Testing was not widely discussed, and my gynecologist did not engage me in a serious discussion of its importance, given my high risk history. I also feel I ignored many of the initial symptoms, which were so similar to post-menopausal experiences, because I wasn't aware of the risk factors for ovarian cancer.

Since the onset of the initial cancer, I have enjoyed periods of stability; unfortunately, I am now experiencing my third recurrence since 2011. I have had two rounds of chemotherapy, with good and rapid results. I've also been fortunate to have located access to a compassionate care program in the U.S. for an experimental drug which is not yet approved in Canada. Along with my doctors in Montreal and in Boston I am now in the process of evaluating some new optional treatments for this recent recurrence, in balance with a return to traditional chemotherapy.

The journey has been a rocky one, of course. I continue to have excellent access to and follow up by the first-class cancer care team at the Segal Cancer Centre in Montreal. In addition, with the aggressive support and resourcefulness of a son, I have sought consultations with top specialists in North America. My experience has shown that the 'treatment team' goes beyond the medical establishment and includes the patient, and their support network of family and friends. Patients need to take an assertive approach to become informed, seek information about current and emerging treatments, ask questions, and push for rapid response. Outreach to support groups like Ovarian Cancer Canada for guidance and support is invaluable.

I now have accepted that my cancer is a chronic illness. Those stubborn treatment-resistant cells keep rearing their ugly heads! I need to continue to maintain a positive attitude to this disease, to supplement my medical treatments with exercise, relaxation, stress reduction activities, and continue to participate as actively as possible with family, friends, and my community. My goal is to respond in an informed way to each new recurrence with the hope that I can benefit from the important research in areas of genetic profiling, immunotherapies, and other emerging areas.

I strongly believe educating women on the warning signs associated with ovarian cancer and access to screening clinics should be fundamental. Genetic testing must be widely spoken about, and offered to women, and men, who either have a family history of breast and ovarian cancer, or who have a concern about their risk level. Both males and females can carry the genetic mutation, which can be transmitted to offspring, male and female, at a rate of 50 per cent.

I believe that the general practitioner and, of course, the gynecologic specialist are the primary source for these discussions, which should be integral to their routine intervention with patients. These medical practitioners must be alerted to their pivotal role in the process of early detection and prevention.

I take advantage of all of life's great moments, more than ever as I'm aware of how fleeting they can be. As with the last three recurrences, I'll tackle this one as wisely as I can and will continue to look forward to many, many productive and meaningful years.


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