Waterloo woman urges BRCA tests for women at risk of ovarian cancer

On a whim, and because she wanted to be "publicly minded," Adele Dobkowski signed up for a genetic research study seven years ago, a decision that saved her life.

'Now I have a chance at life': Adele Dobkowski's fateful choice 7 years ago

Adele Dobkowski from Waterloo says if she hadn't found out about her genetic predisposition for ovarian cancer, her doctors likely wouldn't have caught it in time to save her life. (Submitted by Adele Dobkowski)

On a whim, and because she wanted to be "publicly minded," Adele Dobkowski signed up for a genetic research study seven years ago, a decision that saved her life.

Now in her 60s and a survivor of breast and ovarian cancer, the Waterloo resident is urging Ontarian women who have a family history of cancer to undergo a screen that is now available for free to them through the Princess Margaret Cancer Centre's recently launched prevention program.

The screen can catch mutations of BRCA1 and BRCA2 genes. These mutations are correlated with a higher risk of cancer.

"For most of my life I have been one of those horrible people that's the healthiest person that anybody knows, so I actually had very little of a medical story until very recently," said Dobkowski, a former executive in the arts sector, in an interview with CBC News.

In 2008, Dobkowski provided a saliva sample to researchers in Toronto who were testing the prevalence of mutations of BRCA1 and BRCA2 in women with eastern European and Ashkenazi Jewish backgrounds.

Women with the mutations have up to a 45 per cent chance of developing serous (not to be confused with serious) ovarian cancer, compared to an average woman whose risk is between 1 and 1.5 per cent, according to Dr. Marcus Bernardini, a gynecological oncologist at Princess Margaret Cancer Centre in Toronto.

He said…if we hadn't done this, we'd be struggling for your life a year from now,- Adele Dobkowski

To her shock and horror, Dobkowski tested positive for a BRCA2 mutation. Her first reaction was that she wished she had never participated in the study at all.

"I've always been a super energetic, very active, very healthy person. I never got colds. I never got the flu. My whole sense of myself was wrapped up that had a great body that worked the way it was supposed to," said Dobkowski.

"I was shocked. I was angry. I was in denial. I wanted to pretend that it hadn't happened to me."

Dr. Bernardini calls serous ovarian cancer the silent killer because symptoms do not manifest until later stages of the disease.

"The survival for this type of cancer is very, very low," said Dr. Bernardini.

Cancer detected early due to screening

With genetic counselling, Dobkowski was presented with options to prevent ovarian and breast cancer. She agreed to annual mammograms and MRIs to monitor breast cancer, but decided against surgery to remove her ovaries.

"Most people say, as soon as I found out, I want to take care of it. I wasn't that person," said Dobkowski.

It was not until 2013, at the urging of her adult daughter who tested negative for both mutations that Dobkowski decided to undergo an oophorectomy to remove her ovaries. Her surgeon was horrified to find a small cluster of aggressive cancer cells in her fallopian tubes.

"He said…if we hadn't done this, we'd be struggling for your life a year from now," said Dobkowski.

A short time later, at her annual mammogram and MRI, Dobkowski learned she had breast cancer. She underwent chemotherapy at Grand River Hospital for both the breast and ovarian cancer and had a double mastectomy in September 2014. She is now cancer-free.

Dobkowski has become a vocal proponent of genetic screening for the BRCA1 and BRCA2 mutations.

"I'm thrilled it's being made available to more women, not just people who happen to be part of a research study because it's honestly saved my life," said Dobkowski.

New program hopes to change ministry funding policy

Genetic testing for BRCA1 and BRCA2 mutations is covered provincially to those who have been diagnosed with ovarian cancer, and to women who have a strong family history of cancer.

But for women who have lost just one family member, the cost of the test is around $2,000.

The newly launched Prevent Ovarian Cancer Program, run out of the Princess Margaret Cancer Centre in Toronto, offers the test for free to Ontario women who are over the age of 18 and who have lost a mother, sister or daughter to ovarian cancer.

Dr. Bernardini, a member of the Prevent Ovarian Cancer team, said he has enough funding from the Princess Margaret Cancer Foundation to test 600 women, but he's hoping to expand that to 1,000. He estimates between 10,000 and 15,000 Ontario women are at risk of having one of two mutations.

"We believe after testing 1,000 women we will be able to acquire the necessary data that will be able to show the province that this is something that should be offered to all women that fit this criteria," said Dr. Bernardini.

"We are estimating that we will identify close to 10 per cent of the women that we test will carry the mutation of BRCA 1 or 2 and we are very confident if we confirm that number that that will be enough to have the ministry make an addendum to the current guidelines."

How to participate

Women in Waterloo Region interested in participating can go to the program website where you fill out a family history questionnaire. If you qualify, blood tests can be taken locally at a LifeLabs facility and samples are sent out to Princess Margaret Cancer Centre in Toronto.

If you test positive, OHIP-funded genetic counselling is available at Grand River Hospital in Kitchener. There, options are provided to prevent the development of ovarian or breast cancer.

"When someone is determined to be BRCA 1 or BRCA 2 positive probably the first thing that happens, one gets a sense of what their fertility wishes are," said Dr. Bernardini.

"If they are beyond age of childbearing and not wishing to have any children, then they would be offered a prophylactic procedure immediately. If someone is still wishing to have children, then again it becomes a bit of a discussion with their doctor about what is the most appropriate time and what is the most appropriate surgery for them."

Dr. Bernardini said those with BRCA1 mutations can develop ovarian cancer as early as age 35, but the median age is in the early 50s. Those with the BRCA2 mutation tend to be slightly older.

Dobkowski empathizes with women who do not wish to know about their genetic predisposition. She remembers her initial regret upon finding out about testing positive.

"I was really just so irritated that I had to think about this, that I stuck my head in the sand and did nothing really, other than do the annual MRIs and mammograms…I was the bad patient, but even as a bad patient, I feel I was very lucky," said Dobkowski.

"Help yourself. This is a way in which you can help yourself. This is something that can really improve my life and now I have a chance at life."

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