Seeking, Finding and Giving information about your prostate cancer
Geoff McLennan, Prostate Cancer Survivor and Advocate
I recently read a thought-provoking interview in Medium about Myriad geneticist, Dale Muzzey, one standout theme from his highlights was the thirst for discovery that scientists share. In his case, a never-ending quest for clinical solutions to improve life and healthcare via genetics. Research for our own health challenges, while beneficial, can become an avalanche of information from media, family and friends, and from our clinicians. This is especially true for prostate cancer (PCa). That brings me to my next topic: How can PCa patients use a quest for knowledge to help others with prostate cancer? How can it save the lives of those around you?
We are the fortunate recipients of researchers’ pursuit of excellence. Why not apply the same zeal for answers in our prostate cancer journey? Who or what is a good starting point? Do we need a map and a compass (excuse me, smart phone)? How large a backpack will we need to store the information we find, like and share?
Searching for prostate cancer knowledge
1. Getting organized with families.
How do you begin this quest for knowledge? Well, for one, sit down with your spouse, close friends and family to see if they want to participate. This might be very important to genetic males on both side of your parent’s family tree, as your prostate cancer may have evolved from those family trees – the “germline” that occurred at the moment of conception. Think positively about this as you begin by sharing your “seeker of knowledge” philosophy about your prostate cancer. Assuming you get some family takers in your request, you’ll next want to shift to short assignments such as:
Interpreting your genetics test, such as the Myriad MyRisk®, BRCA 1+2 and genetic test results available in the families. Have someone else take on this assignment, because fresh eyes on your test result might be more objective than yours alone. It is now considered acceptable to bring friends or relatives to your doctor appointments since knowing someone is there to support you can help you relax.
Find out if other family members have been diagnosed with prostate cancer or other cancers, and if so, whether, when, and where they were treated and how they are doing.
Find out if women in the family trees have experienced cancers and if so, when, what types and whether they had genetic testing. Again, be the leader and seeker of information.
Contact a trained or degreed genetics counselor such as a Myriad Genetics counselor for advice once you develop a knowledge base in the families. If there are any adoptions in the families, ask the genetic counselors for help in researching missing or interrupted family trees.
Include friends and non-relations, as they, too, might help and want to participate in your quest for cancer knowledge project and might be interested in learning about their own genetic needs. Many clinicians and genetic experts use family screening methods like genetic screening to help patients identify genes that carry higher risk for cancer and then help them and their families receive more vigilant care. Learn if you qualify for germline testing like Myriad MyRisk Hereditary Cancer testing.
Know this: Your prostate cancer could be linked in your family’s genetics and not just to men. Researchers have discovered that cancer genes (mutations) are passed down via both genders. This means your risk of developing an aggressive cancer may stem from breast, colon, pancreatic, ovarian and many other cancer variants, singularly or in multiples. Likewise, men, women and children in your families could be at a higher risk and need to know about your prostate cancer. Researchers are discovering the critical need to share genetic information, because some aggressive cancers can strike as early as the twenties and thirties, and even in the forties for younger men possibly at risk for prostate cancer.
Be careful with family. Some people may choose not to share their known medical history of cancer. It is a sensitive topic, so be gentle.
2. Call on your doctors, past and present, whose records about you may hold helpful information. organized with families.
Can you recall any procedures where tissue or an unusual growth was removed from your body? It might be helpful to contact that clinician’s office and retrieve medical history records and other possibly useful information. Also ask your doctors if they have incorporated on-site genetic testing in their practices to help patients and families.
3. Join a Prostate Cancer advocacy organization or medical association that seeks patient participants.
Many nonprofit organizations exist to support and educate cancer patients. The American Cancer Society, Active Surveillance Patients International, ANFAM and Cancer ABCs are a few. You can do an online search for local, national and international groups that will provide a helping hand in understanding cancer genetics.
4. Prepare a list of questions for your next urological appointment.
It is wise to keep a paper or electronic file of your medical records — every appointment and result — at home. HIPAA laws protect your medical records, but it is practical to know how to access your own, as the need could arise if you are injured or even just out of town.
5. Website resources: A great place to begin your genetic journey.
You may want to bookmark informative sites where you can learn about genetics, prostate cancer and many other cancers. Pass this Myriad website reference with information about prostate cancer genetic testing to your family team. Consider looking at other Myriad cancer resources.
6. Stay tuned to this blog!
Seeking, finding and receiving knowledge are all part of life. What is enjoyable about discovering your health via your family history is that younger generations will benefit from knowing how to anticipate health changes, if any, based on genetics, germline testing and possibly future treatments honed to your genes. The day of the clipboard and paper questionnaires about family health history may finally be over – throw away the Bic pens! Our modern age of technology-based medicine will help individuals and families learn their health histories and possibly the risk certain genes play in a lifetime of medical care. When Socrates said “Know thyself,” he was not kidding!
Summary: Be well.
Until we meet again, enjoy life!
Looking for more information like this? Read Understanding PSA. Or request a patient guide to learn more about the Prolaris Prostate Cancer Prognostic Test.
Confused about which prostate cancer treatment is right for you?
Contact us at UrologyTestSupport@Myriad.com or 513-216-4752 with any questions you may have.
Geoffrey T. McLennan, MPA
Geoff is dedicated to helping families and friends support a prostate cancer patient. He joined the board of Active Surveillance Patients International (ASPI) in 2018 and is an 11-year PCa patient. As a PCa patient advocate, he envisions providing a broad understanding of how patients can collaborate with clinicians for realistic medical care. He enjoys meeting and learning from his clinicians, cancer researchers, providing free online programs for patients, and reminds us that “to live, learn and thrive with PCa” is the motto of ASPI. He is glad he took science courses for understanding a healthy lifestyle that includes exercise and diet.
Geoff also volunteers as a board member and past chairman of the Placer County Mental Health Advisory Board where his interest includes therapy and resources for AS men, and a broad oversight of community mental health programs and innovations. He is married to Constance McLennan, a fine artist, has a grown son, and lives in Northern California.