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A pancreatic cancer survivor explains why he chose to undergo genetic testing and what he learned from the experience.
After getting thrown under the pancreatic cancer bus eight years ago I have questioned non-stop what I did to become one of the approximately 60 thousand unlucky people each year who get this catastrophic news. With no real screening tools available and often found too late to treat, getting told you have it is often equivalent to a death sentence. So, I wondered what would be the point of getting genetic testing now? Would it shed any light on why this happened to me? Or worse, would it tell me it is likely to come back?
After attending two webinars on genetic testing, one by CURE® and another by Let’sWin!, a group dedicated to helping people stricken with pancreatic cancer, I decided to proceed with genetic testing. Why?
Most genetic tests come back negative.
The genetic experts who spoke at the two webinars noted most genetic tests come back negative for mutated genes linked to an increased cancer risk. Additionally, the licensed genetic testing counselor I saw told me, “By and large cancer is rarely caused by a mutated gene.” Thus, knowing genetic tests rarely come back positive made the decision to proceed easier for me. Most genetic tests come back negative.
Not knowing changes little.
At least for me when someone has dodged the cancer-bullet, especially for one of the more lethal ones, we are motivated not to go through that gauntlet again – those horrific treatments and the hyper-anxiety about whether we’ll make it. For those who have been through it, we will do anything to avoid it. Anything. For some, they would rather not know if they have a rogue gene that might lead to cancer or a reoccurrence. But whether we know or not makes it no less lethal. Not knowing changes little.
A positive test only indicates an increased risk.
Simply getting a positive test for a mutated gene does not mean the person will develop the cancer associated with it. It only means they are at an increased risk of it. Nothing more. But if one knows they are at a higher risk for a particular cancer they can step up their screenings for it, such as having more frequent colonoscopies. Or for men, having prostate exams with PSA tests. And for women along with some men, doing regular breast self-exams along with more frequent mammograms. For former smokers, this may mean getting a regular CT screening. A positive test only indicates an increased risk.
Testing saves lives.
Like most, I would be devasted if anyone in my family were to be diagnosed with cancer, especially if I could have done something to alert them to it. In my view, if some of my tests came back positive, I could inform my family and near blood relatives of these results and perhaps save their lives. Especially if my testing might prompt them to get tested themselves and perhaps save their lives through additional screenings. Testing saves lives.
Your testing may be covered.
Years ago, genetic tests were quite expensive, hundreds of dollars for each test. But these days, at least for people with a family history of cancer, these tests may be covered by insurance or at a low enough cost to justify proceeding even if they are not. In my case, being a pancreatic cancer survivor, I qualified for a free trial sponsored by a chemotherapy company seeking to connect certain genes with particular cancers. Your testing may be covered by insurance. Coverage varies widely as each person’s insurance company determines what they will cover. But like everything, it is a cost-benefit tradeoff. Do I want to know and work to detect a particular cancer or not know and hope to avoid it? Your testing may be covered.
Proceed with your eyes open.
One of the downsides of genetic testing is the potential for crippling worry and possible impacts on your insurance both medical and life. Being post-pancreatic cancer, these concerns made no difference to me. But for some, they might need to think through how they will deal with a positive result. Women who are BRCA1- or 2-positive and have a family history of breast cancer have been known to undergo a double mastectomy rather than risk it. Others need to weigh out the risk of loss of insurance due to a positive result versus the benefit of finding cancer early through stepped-up screenings when it is more treatable. Work with your doctor and genetic counselor to determine what is best in your situation. Knowing is not for everyone. Proceed with your eyes open.
My tests were comprehensive; 84 genes were tested in all. Each tested gene was classified as either positive, negative or uncertain. In my case, as I expected, 83 tests came back negative, with one uncertain result. I had a small variant within PALB2, a gene often associated with, you guessed it, pancreatic cancer, as well as breast and ovarian cancer. This variant was marked as uncertain, meaning it is unknown whether it increases the risk of cancer. Looking back on this I am happy I made the decision to proceed but again know is not for everyone.
So, if you are contemplating genetic testing, check out CURE®’s Educated Patient® Webinar: Empowering Patients to Understand Genetic Testing and Counseling. If you decide to proceed with testing, I encourage you to consult with a genetic counselor to determine if it’s a good fit for you. But like all things medical, this is your choice. At a minimum you should know most genetic tests come back negative, not knowing changes little, a positive test only indicates an increased cancer risk, testing saves lives, your testing may be covered and proceed with your eyes open.
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