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At Last, Clarity! 
Thanks to the dedication of genetic counselor Rachelle Manookian, MS, CGC, John Strizver finally has answers to the questions he has been asking for 10 years, and hope for the future.

John Strizver thought he was finished with prostate cancer 23 years ago, after a radical prostatectomy in 1998.  And, for many years, he was:  He and his wife, Janice, who live in California, got a motor home and took their two young sons all around California and across the country to visit family.  They traveled to Kauai every year, and enjoyed the outdoors at home, too, on their nine-acre property in Ramona, near San Diego.

“Prostate cancer was out of sight, out of mind,” he says.  Then, in 2008, his PSA became detectable – a few months after a wildfire in San Diego County burned more than 2,000 homes. “Ours was one of them.  My wife and I both agree that stress is not a good thing when it comes to cancer.”

Around this same time, John’s brother-in-law was diagnosed with metastatic prostate cancer, and went on androgen deprivation therapy (ADT).  When John’s PSA began to rise, his doctor at the VA Medical Center offered him ADT, as well, but he decided to wait.  “I knew the side effects, and I just didn’t see how that was really an effective treatment when you’ve got a really low PSA.”  John, whose background is in computer programming, wanted some basic data about his cancer, so he could make an informed decision.  Mainly, he wanted to know where the cancer was.  His PSA kept going up, but nothing showed up on CT and bone scans.  “They were always indeterminate; no positive signs of the cancer, for 10 years,” says John.  “I went for a scan every three months, along with PSA that showed that the cancer was there, but they could never show me where it was.  My PSA rose in fits and spurts; in 2018, it was almost 100,” and John began to have bowel issues.

“I kept telling them, “You show me where the cancer is, and we can develop a treatment plan.  But they never could.” 

John’s doctors at the San Diego VA scheduled a video conference for him with Rachelle Manookian, a genetic counselor based at the Greater Los Angeles VA Medical Center.  Right away, John was struck by how much she cared and wanted to help him.  “Her passion for what she does, her concern for her patients, her knowledge, her willingness to do the research, was just so immediately apparent to me.  I just came away from that first interview with, ‘Wow, we’ve found something here!’  She also warmly welcomed my wife, Janice, into the conversation.”

John’s sister died of pancreatic cancer, and his father also had prostate cancer.  Rachelle developed a genetic profile, “even informing me that my paternal lineage is of East European Ashkenazi Jewish ancestry.”  She explained the results of the genetic tests John had taken, and discussed further tests he might consider.  She also told John about a VA-PCF Precision Oncology program, suggested that he try to get tissue samples from his original tumor in 1998 for biomarker testing, and got approval for a “liquid biopsy,” a blood test for circulating tumor cells.  “She left no stone unturned in a quest to find me the very best care available to anyone, anywhere.”

Genetic counselor Rachelle Manookian, MS, CGC (left) and John Strizver (right)
Genetic counselor Rachelle Manookian, MS, CGC (left) and John Strizver (right)

The idea of precision medicine, directed toward his specific genetic mutations, really appealed to John.  “The approach of grabbing a drug off the shelf and maybe it will work for a little while is so yesterday to me.”  However, further tests revealed only one unrelated gene mutation – nothing that would lead to a gene-targeted treatment.  John was disappointed, and also “somewhat saddened, knowing that the provider/patient relationship had reached an end.  Rachelle had given me a sense of confidence, optimism, and hope.”

But it didn’t end.  About a year later, Rachelle called with news:  “She said there was a clinical trial at UCLA,” led by PCF-funded investigator and medical oncologist, Matthew Rettig, M.D.  It was for a new kind of imaging, PSMA PET, which can show spots of cancer as small as a grain of rice.  (PSMA PET has since been approved by the FDA; you can read more about it here.)

“That PSMA PET scan showed tumors in my lower intestines that are prostate cancer.  Right away, I had clarity!  You know what that does, to someone who’s been looking for that for years?  The clarity was such a relief!  It gave me the direction I needed.”

The next step was ADT, which has since driven his PSA down to 1.  “The story that my brother-in-law would tell if he could is that hormone treatment will fail.  So I am undergoing this treatment that I know has a limited lifetime.  But PCF is so dedicated to finding a cure for this disease, and to make sure that men who have prostate cancer die with it instead of from it, that I’m hopeful.  I feel as great as possible.  I should feel greater, because I should listen to my wife more and exercise more, but I don’t; when I go out skiing, I hurt!

“You learn to live with the symptoms, and the treatment side effects,” John says.  “Hormone treatments basically put a man into menopause.  The hot flashes are horrible; I cannot get a full night’s sleep, because the hot flashes are like, WHOOM!”  But the alternative is worse, John adds.  “Consider where my brother-in-law is, and consider where I am.  I have only praises for the way that God has handled this for me, and how people like Rachelle, like Dr. Rettig, who are dedicated practitioners, have helped me get through to where I am now.   From 1997 to 2021, that’s 24 years of living with cancer.  How many people do you know who have lived 24 years with cancer in their body?  I’m blessed!  Rachelle remembered me, and called me a year later.  Who does that?”

The PSMA PET results are “like a road map,” John notes.  “They show exactly where the prostate cancer cells are.  My understanding of precision medicine is, okay, so now you have that roadmap, you need the ‘destroy’ function to complete the seek-and-destroy mechanism – a mission which PCF is actively involved with.”  Because if the radiotracer could “selectively target those cancer cells with a killer agent, then I think I could say that I would be cancer-free.”  John hopes that just such a killer agent, called 177lutetium-PSMA-617, will be approved in the U.S.  Promising results from a large clinical trial were announced in June 2021.

“There is hope,” says John.  Prostate cancer is something that you don’t have to die from.  It doesn’t define you.  You are not prostate cancer.”

In February, 2021, John nominated Rachelle – who is now at City of Hope Comprehensive Cancer Center – for PCF’s TRUE Caregiver Stories contest.  His story won.

Even better:  He and Janice have since welcomed their first grandchild and celebrated her first half-birthday.  “Strizvers do strange things!” John says.  “Janice and I remain very busy, very active.  We like to go out on her boat, ride bikes, and entertain friends and family.”  Speaking of strange things, “Not long ago, I drove my truck to New Mexico, and this 31-foot fishing boat followed me home!  After some dithering, I decided to keep it.  I have since discovered that the word ‘boat’ is synonymous with ‘major project,’ and I have been spending more time and money on that than my wife!  So, the boat’s name became ‘The Mistress,’ and she is planning her ‘maiden’ voyage very soon.”

 

For more on genetic testing for inherited mutations, biomarker testing, and precision medicine, download PCF’s Prostate Cancer Patient Guide here.

Janet Worthington
Janet Farrar Worthington is an award-winning science writer and has written and edited numerous health publications and contributed to several other medical books. In addition to writing on medicine, Janet also writes about her family, her former life on a farm in Virginia, her desire to own more chickens, and whichever dog is eyeing the dinner dish.

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