Russell shares how his diagnosis with advanced prostate cancer led to genetic testing that revealed a BRCA2 mutation, which explained his family history of cancer and informed his treatment plan. Joined by his medical oncologist, Dr. Pedro Barata, Russell reflects on the importance of genetic testing, early PSA screening, and understanding inherited risk factors before cancer develops. Together, they highlight how this information can guide treatment decisions, support family members, and empower patients to take a more proactive approach to their health.
Dr. Pedro Barata:
Hello and welcome for another Patient Story. My name is Dr. Pedro Barata. I'm a GU medical oncologist out of University Hospitals Case Western in Cleveland, Ohio. And today I'm thrilled to be joined my wonderful friend, Russell Fry.
Welcome, Russell. Thanks for taking the time to chat with me today.
Russell Fry:
Thanks. Thank you, Dr. Barata.
Dr. Pedro Barata:
So I got to meet Russell a couple of years here and we established a very close relationship. I'm proud to be involved in his care for prostate cancer. And I would love to pick your brain, Russell, on the journey that started two years ago. Tell me a little bit about yourself. Where are you from, family, how life looked like before I met you?
Russell Fry:
Well, I'm from a small town in Ohio. Married, three kids, early 50s. Before I got diagnosed everything's going pretty smooth. There was some cancer in my family, but I wasn't too worried about it. Never had any kind of signs, really. Didn't really think much about it, but everything was going good and then it just kind of got derailed a little bit.
Dr. Pedro Barata:
Tell me what happened, Russell. You had some awareness around prostate cancer, but what did PSA meant to you? And you did mention cancer in your family. Can you walk us through when you realized that PSA didn't look right and what that meant to you?
Russell Fry:
The cancer that's kind of went in my family was like breast cancer. Even my dad, which is rare, had breast cancer instead of like a prostate or a lung cancer, which was odd but not unheard of. So I never really thought much about it. And I knew PSA levels, but I never got checked for a baseline. I never had any problems. I didn't think.
And then there was a time where I was struggling to go to the restroom and I thought it was maybe prostatitis, you know how you self-diagnose. And then I finally went in and got a PSA thing done, a test and my numbers were at I think 14, something like that. They thought it may be an infection.
So they waited a little bit, did another test and it climbed up to 16, 17. That's when biopsies and things of that nature. But yeah, up until that point, man, everything was going pretty good. I had no idea that it could even be a problem.
Dr. Pedro Barata:
So at that time you got the explanation that the high PSA was coming from the cancer invading the prostate and then you were asked to see a medical oncologist dedicated to prostate cancer to help out with next steps. And I believe that's when I met you and I know there's a lot of things that we discussed, but one of them I believe in the beginning was, "Look, we need to find out what it is. And I ordered you a scan." Do you remember that experience going through a PET scan called PSMA PET and what that information meant to you?
Russell Fry:
I knew it needed to be done, but it was scary. You know what I mean? You guys made it great. But, just going through it, it's something you have to do to make sure it is what it is, but I never had a broken bone, you know what I mean? Or stitches.
Dr. Pedro Barata:
Super healthy.
Russell Fry:
All that stuff was scary. But you guys made it pretty smooth.
Dr. Pedro Barata:
When the scan came back and I had to disclose the results, which it's not a fun time, although that was the bad news. The worst news was to tell you that disease was going elsewhere. And just more technical here. So we defined this as advanced disease or Stage 4 prostate cancer. And for folks who might be listening to this, so this means newly diagnosed metastatic prostate cancer and at this stage the backbone of the treatment involves lowering testosterone levels. We'll talk about that in a minute.
So we talk for some time about what it meant to have those spots in different places of the body. And while we talked about the management, what to do, one of the things we discussed was the genetic testing when you and I were talking around the need for genetic testing, to look for genes that you're born with from mommy and daddy. And then you told me about the family history.
So do you remember the conversation around that test, that genetic test and what it meant to you? Because I remember you wanted to do it, but how did that sink in, I guess, and how do you absorb that?
Russell Fry:
I probably should have had it done when I was younger, when my dad had it, my sister and then an aunt. I guess you just assume ... I assumed that I probably was a carrier, but I guess I didn't realize if you get diagnosed with the gene, the things that can be done to prevent by knowing that you have it. You can get better treatments as far as finding out if there's anything going on inside. I just figured, well, it just means that I'm likely to have it. If I come back and it says, "I don't have that, does it mean I can't get cancer?" And they're like, "No." And I said, "Well, then why would I care?"
Well, I should have listened and I should have learned, educated myself that by learning what kind it is, I would've been able to get some preventative care earlier and it wouldn't have been so weird for a guy in his early 50s to have prostate cancer. I would've been able to check for it in my 30s and 40s instead of everybody saying, "Oh, it's probably not that because you're too young."
Dr. Pedro Barata:
Wonderful piece of information and news and update for the listeners because you're right, right now in the guidelines, Russell, we are or should consider discussing genetic testing like the one you got to everyone with localized high risk or recurrent or advanced prostate cancer irrespective of a family history. So the fact that you're already aware of it, I think you facilitate a lot of our conversation around the test. And by the way, we can do it with using saliva, we can do a blood test. We tend to do a blood test where we were. And so I think you're spot on when the results came back, we found out that you carry a BRCA2 genomic alteration.
Before I break it down a little bit technical on that, you end up being offered what we call a genetic counselor, an expert to discuss that. Can you walk me through how that experience was, how informative that was and what it meant to you and your family?
Russell Fry:
They were kind and compassionate and understanding. They listened to my concerns and they helped me through, there were some financial concerns that I was worried about and they said, "Don't worry, we'll take care of everything." They really helped me through the whole process to where I was afraid they were just going to say, "Give us the blood and we'll find out what it is and send you on your way." And then she kept in contact with me throughout the whole process until the results came back. So it was very seamless, had no issues with it at all and the information I got was life changing, really. I mean, it helps me do what I do today is because I got that testing.
Dr. Pedro Barata:
BRCA2 is one of the genes that help us fix the DNA, which is the brain of the cells that when they replicate very fast, they can accumulate problems and the BRCA2 gene and other genes, help to fix those issues. So when we have a mutation in BRCA2, in general, that means the tumor tends to behave in not a good way. It tends to progress faster and so it's important to know about it in addition to the implications for the family, because if you were born with it, it is a possibility that the family members like siblings or children can carry that alteration as well. So you have that conversation and act on it with a genetic counselor.
And then on our end, I believe when we talked about it, we said, "You know what? The treatments we're going to give you, we're going to be carefully keeping you close by, so to speak, not forget about doing scans, not forget about doing tests on a regular basis because the tumor might not be as nice in terms of staying asleep for a long time because of these alteration." Does that sound familiar to you? Was that the understanding that you had from our conversation or is that something else you picked up from having the discussion around the genetic test results?
Russell Fry:
I remember it more just of our conversation. Honestly, when she came in to do all the genetic testing I was on a rope still because we just found out everything. So it was just kind of a blur. And I wanted to get checked because I wanted to have the information for my kids and I knew it would be valuable for my treatment. So, yeah. That whole couple days right through there, I just remember worry, a lot of worry.
Dr. Pedro Barata:
We talked a little bit about what that meant and we're always going to walk side by side with you and the news is a few months ago, so it was not available when you and I discussed this or we found out about it at that point. They're actually treatments that work remarkably well for cases of BRCA2 alterations. Those are known as target therapies, like PARP inhibitors and as well as platinum-based chemo. But PARP inhibitors have shown to control the cancer in a very, very good way. At that time, we wouldn't use them when we found out about it, but we can use them when the tumor wakes up at some point, I hope never. But if it happens, we can use them.
But the news for the listeners, actually things changed so quickly just a couple of months ago, we now have PARP inhibitor approved for cases like yours where we can actually offer them upfront. So it emphasizes the importance of testing early because we can actually do something about it early as well. Of course, in our case, and we talked about this about options, et cetera, we can do something about it. So not only has prognostic implications as we talk, but also predictive, meaning it tells us the chances of that treatment that I alluded to, what are the chances that's going to work and the chances are pretty high. So it's great that we know about it.
Russell Fry:
When my family, the people who went in and got tested, when they got tested for the genetics, I wish I would've done it because it would've probably changed the way ... I just wished I'd have learned more about it. If I would've known that, I would've at least stayed more on point with what treatments and preventative stuff.
Dr. Pedro Barata:
Yes. So what you're saying is if you were to know you had this genomic alteration, you wish you knew sooner because you probably would've do checkups in a different way, your doctors would've offered you different things, right?
Russell Fry:
Right.
Dr. Pedro Barata:
Yeah, no, I think that's super important message. And you're absolutely right. Sometimes the family doctors do offer different screenings earlier age to your point, not just PSA, but also check for breast. As you said, breast cancer in men is pretty rare, it does happen for the BRCA2 cases and other examples of tumors. We look for them at a much earlier age than a normal general population.
So final thoughts around what would you advise men out there about the genetic test and the screening? What about getting checked early? What are your thoughts? What is your piece of advice for men out there who might be listening to us today?
Russell Fry:
My advice is, and I've told anybody who will listen, all my friends, just anybody if before there's a problem, it's best to just get a PSA done, get a baseline, especially if you're around my age, get a baseline done, and get it checked. Be vocal about it. Tell them you want it. Listen to your body. My body was telling me things years before I actually got diagnosed. I should have listened. And looking back, there was probably indicators.
So it's okay to ask for help. It's okay to ask doctors or tell them, these are my issues and nobody can help you unless people know you need help. So I would get tested if I knew if there was genetic problems with cancer in my family, I would not hesitate to get that done, get the numbers, make it available to anybody in your family who wants to know them.
Dr. Pedro Barata:
Well, Russell, this is a super powerful message. Thank you for sharing that with me and everyone who will listen to this super powerful message. Thank you for that and for raise awareness around the importance of getting genetic testing, getting screening and act on that sooner rather than later.
Russell Fry:
Yes.
Dr. Pedro Barata:
So, thank you. Thank you so much. It has been a pleasure chatting with you as it…
Russell Fry:
Always. Always with you.
Dr. Pedro Barata:
... keep walking the path with you side by side.
Russell Fry:
Yep. I appreciate it.
Dr. Pedro Barata:
Thank you.