When I was diagnosed with prostate cancer, I really wasn’t sure what to do next. I met with my doctor and she said let’s look at your family history. When she looked at the information, she told me, “That family history combined with the fact that you have prostate cancer tells me that you really should have genetic testing.”
When I got the results, I learned that I have the BRCA2 gene mutation. My doctor told me that the BRCA1 and BRCA2 gene mutations normally protect us from certain cancers. A mutation in one of these genes means that protection is lost and over time, this may mean cancers are more likely to develop.
My wife and I immediately reached out to both of our adult children and explained why it would be a good idea for them to get tested as well. We discovered that one child was negative for the BRCA mutation and the other was positive.
My child with the mutation now knows what to do regarding each of the cancers that they are more susceptible to developing. In fact, they recently said to me, “Dad, I am so glad that I know because I feel more in control.”
I also urged both of my brothers to get tested. It turned out that like me, they are both are BRCA2 positive too. One brother has an aggressive prostate cancer, and this knowledge will improve the care he receives. Additionally, each are being screened regularly for other cancers for which they are at higher risk. And both of my brothers have urged their children to get tested as well.
There has been a shift in the healthcare field. Patients are increasingly becoming active advocates for themselves and serving as partners with their healthcare team.
It is essential that patients and physicians work together to uncover more mutations that impose a risk for cancer for ourselves and our families so that new targeted treatments can be developed and patient outcomes improved.
To me knowledge is power. Knowledge leads to better control and better decision making. For this reason, I joined the PROMISE registry – an observational study that looks at how specific inherited genetic factors or mutations of patients with prostate cancer can influence the susceptibility of men to prostate cancer; impact the effectiveness of existing treatments; improve guidance for different and/or new treatment options; and suggest precise areas to explore for new discoveries.
There is so much work for all of us to do so that people have the information to make informed decisions. I have deep hope that together – patients, physicians, and researchers – can make meaningful discoveries.