Joel shares how he pushed for answers after rising PSA levels ultimately led to a diagnosis of aggressive, stage 4 prostate cancer with a Gleason score of 9. Following surgery, radiation, ADT, and additional treatment-related challenges, he has remained undetectable for five years and now advocates for greater openness around prostate cancer. He speaks candidly about survivorship, side effects, and the importance of support and shared experiences throughout the journey.
My name is Joel Pointon. I'm a prostate cancer survivor. I was diagnosed seven years ago when I was 66, which is the average for men in the United States for diagnosis. Well, I have an advantage that way. I have a master's in public health. I've done research in toxicology. So I was really involved in my healthcare and was very familiar with the PSA testing and what it indicated or didn't indicate.
The first indication I had was the usual physical exam, what's known as the digital rectal exam. And my primary care doctor indicated that I had an enlarged prostate. The PSA testing that we did at that time indicated a level of four. I was referred to a urologist at that time for a possible biopsy. They decided it wasn't indicated. 18 months later, my primary care doctor had done another PSA test and it was at six at this point.
And I was sent to the same urologist. Again, they said they didn't feel strongly that I needed to have a biopsy. I insisted at that point, the biopsy was done. When I went for the results, the doctor sat me down and his response was, "Well, you have cancer and it's really bad." My Gleason score was a nine, so nine out of 10 is not where you want to be. I arranged for a radical prostatectomy using robotic surgery.
Within two months, I really pushed to get that date because I wanted something to be done quickly. At that point, they determined that it was stage 4. The PSA readings following surgery indicated non-detectable. However, six months later, PSA started increasing again. This is in the middle of Covid. So we had to go through some gymnastics to get the hormone therapy begun. And then going for 38 sessions of radiation treatment, five days a week.
You show up first thing in the morning, you get your Covid test. They tell you whether you're going to get your radiation or not, and then you go through it. And then we went through 18 months of ADT. And since that time, I have been non-detectable, no indications of cancer since that time. Following surgery, I had some extreme abdominal pains. And of course, it happened on a Labor Day weekend.
I would wake up at four in the morning, extreme pain, ended up going to the emergency room 4:00 AM three days in a row until they finally diagnosed that there was a buildup of lymph in the abdomen. That was one of the complications that came from surgery. They were able to deal with it rather quickly by inserting the appropriate drainage, but it required another hospitalization. Following that, it was just the recovery. So the usual impact one has following surgery is incontinence.
That requires a pretty intense exercise regimen. And so I got really proficient at Kegels. Kegels are about, or Kegels, whatever you prefer, is about the only way you can really build up the muscle and control to regain your incontinence. You have to go through period with pads and everything else. Major inconvenience. To this day, I still suffer from stress incontinence. So laughing, sneezing, whatever, can have that effect, but it's livable.
Next portion of it that was rather trying is when you're going through ADT, the hormone therapy, it knocks out your testosterone. And you have the same effects that women go through when they go through menopause. So you have the hot flashes, you have weight gain, you have muscle degradation, you have bone loss, calcium from the bones. The only thing you can do in response to that is resistance training. And because it was Covid, gyms were not open.
So I hired a personal trainer. We developed an at-home resistance training program for prostate cancer patients to use during Covid. And I approached the Prostate Cancer Foundation. We got them to put it on their website. So it was a resource during Covid for people in recovery from prostate cancer who are on ADT. The next portion of it is radiation. Radiation has its own set of effects that one has. So there's some lethargy.
There's a lot in preparing each day for the radiation treatment that you're going to have. Unfortunately, I suffered some damage to the intestines, so it's called radiation proctitis, and it's something that you need to have dealt with using argon lasers after your treatment. But again, I have no regrets. All of this was more than worth the effort. When I was given my diagnosis, I was also given the recommendation to prepare my documents.
So I am very happy to be here. I've been undetectable for the last five years. My PSA is undetectable, and I live a great life at this point. That's probably the hardest thing. Not only are you dealing with a diagnosis, but you then have to share it with others and you have to reassure them that things are all right, even when you don't feel like things are all right. It's very isolating to receive a very significant diagnosis like that. You withdraw from other people.
That is one of the problems I see as a patient advocate for prostate cancer. We don't get out there in March. We don't get out there and talk about prostate cancer. We're usually ashamed of the diagnosis. We don't sit in groups and wear armbands and promote what it is that we went through or what we found helpful. And I really hope that we can get beyond that point because erectile dysfunction is another byproduct of one of the effects people can have, less so with radiation, more so with surgery.
People don't like to talk about the fact that even if they've survived prostate cancer, they don't wish to acknowledge it. The chances of being diagnosed with prostate cancer is one in eight for the average male, one in six for African American males in the United States. We need to be able to talk about what is happening. The average age being 66, I was right on schedule when I got my diagnosis.
We get older, we're supposed to get wiser, and I would hope that we get wise enough to be able to share information and to be able to rebrand prostate cancer so it's no longer something of shame. It's something that is an opportunity for us to share information. Treatments, I function as a patient advocate. I help design prostate cancer clinical studies right now. I look at the design from the patient point of view to make sure we can survive what the researchers and doctors are planning to do.
The spectrum of treatments that we have nowadays is expanding. Annually, there are new treatments, there are new approaches, better approaches, and we need to be able to share that information. We need to be able to support others when they're going through both their diagnosis, their treatment, and even their afterlife.
I go for blood tests on a ... I insist on quarterly basis because mine was a very aggressive form of the cancer and you hold your breath every time you go for a blood test. But I have a support group of people. We check in with each other and it's like, "We're good to go for another quarter." And this is the type of information and this is the type of support that men are going to need amongst themselves to get to the other side of prostate cancer. It is treatable.