Outcomes4Me patient member Gary is seventy-six years old. A married father of two with three grandchildren, Gary lives in Minnesota. For the majority of his adult life, Gary has been vigilant about receiving annual physicals with a primary care physician. In 2011, when he was sixty-three years old, Gary started to ask his doctor about prostate-specific antigen (PSA) testing. A high PSA level may indicate a greater chance of prostate cancer; however, there has also been hesitancy within the medical community around PSA testing as it can sometimes lead to false positives or potentially needless biopsies that can be detrimental to a patient’s overall health. Gary’s doctor was of the belief that testing could do more harm than good–and, as a result, it would be 7 years until a care team tested Gary’s PSA levels.
Getting an advanced prostate cancer diagnosis
In 2018, Gary dealt with a kidney stone. During his follow-up appointment, a nurse practitioner suggested they test his PSA. Gary’s PSA score was a 11, and about a month later it had increased to a score of 11.5. After a biopsy, Gary was diagnosed with prostate cancer that had metastasized regionally to surrounding lymph nodes.
“In a follow-up appointment with my urologist, she said, ‘We’ll treat you palliatively, and work to extend your life with treatment, but the cancer isn’t curable,’” said Gary. “I saw an oncologist the next week who said the same thing.”
“You’re shocked when you get that news,” Gary continued. “But the oncologist didn’t talk to me about my life plan and how I would navigate my life with cancer. The focus was on the treatment.”
The treatment plan and self-advocacy
Gary was put on a regimen of abiraterone with prednisone and leuprolide acetate and then began radiation therapy. He received nine weeks of radiation, which included 45 sessions at 81 grays. Within a few months of the onset of treatment, Gary’s PSA was <.1 (essentially undetectable), and it has remained at that level every three months since. Gary’s now approaching 5.5 years since diagnosis.
Though Gary is currently feeling well, he’s endured his share of cancer-related illness, discomfort, and treatment side-effects including neuropathy, urinary toxicity bleeding, radiation cystitis, and rectal bleeding.
Voraciously reading and absorbing clinical research and resources–including those accessible via the Outcomes4Me platform–Gary is consistently bringing evidence-based information to his care team.
“I learned about radioligand therapy, a targeted therapy that uses molecules that bind to cancer cells and emit a radiation dosage right into the cancer cell. It’s essentially a little assassin that goes in and kills cancer cells without destroying normal cells,” said Gary.
“I read the study and then asked my doctor if he’d ever heard of it. He hadn’t, so I gave him the study. One of the study authors actually recently transferred from Johns Hopkins to the University of Minnesota. Unfortunately, I don’t qualify for this treatment but I’m interested in the future in case I become castration resistant, which would ultimately mean that my cancer would stop responding to treatment.”
Making a life plan–not just a cancer plan
As a prostate cancer patient, Gary is understandably concerned about the likelihood of progression of his disease: “I want to know what the end of my life will look like, what treatment alternatives there are, and what my life expectancy is. My doctor deflected discussion of an intermediate or long-term prognosis.”
“That’s a major source of frustration for me that doctors mostly want to talk about diagnosis and procedure. But, 95 percent of my experience with cancer is mental and emotional. How long have I got? Do I have the probability of a good outcome? What’s the probability of me becoming castration resistant? This information is important to me in terms of my overall life planning.”
The value of genetic testing and considering clinical trials
Gary is open to participating in a clinical trial, but hasn’t found one yet that he’s a fit for. Because his cancer is currently stable, his doctors haven’t run additional genetic or genomic testing.
“I had genetic testing done fairly early on. There were no genomic mutations in my tumor. I do have a BRCA2 mutation–but it was found to be of ‘undetermined significance’ and didn’t affect my treatment.”
Gary has asked his oncologist if they plan to conduct genomic testing if at some point he is no longer exhibiting no evidence of disease (e.g. NED).
“I asked how they would plan to do the test, and was told it would be another needle biopsy,” Gary said. “I said, ‘Don’t you have samples on file?’ and ‘What about a liquid biopsy?’ There was silence. Sometimes, I think I’m ahead of my doctors because they are treating so many different cancer types and can’t possibly keep up.”
Why it’s important to be be in the driver’s seat of your own cancer treatment
Gary acknowledges that a cancer diagnosis, regardless of the stage, is emotionally stunning and can even be immobilizing. He knows from his own experience that for patients who are just diagnosed, they won’t have any real sense of what to ask during the first meeting with their medical oncologist.
“Soon, though, the questions come in a flood, and will continue to come even as your treatment is underway. The terminology is unfamiliar. The initial treatment plan and its likely effects on quality of life during treatment are often discussed only in the broadest terms.”
Gary believes that having a single, evidence-based resource is essential for patients who want to learn more about their cancer, its causes, treatment options, implications on quality of life, and outcomes data.
“Outcomes4Me addresses all of these informational needs in a way that enables you to be an active participant in your own treatment.”
