Bill Allen on Prostate Cancer and Personal Experience in Clinical Trials

Author(s): Scott Douglas Jacobsen

Publication (Outlet/Website): The Good Men Project

Publication Date (yyyy/mm/dd): 2024/11/22

Bill Allen has been living with prostate cancer since 2004, undergoing various treatments including surgeries, radiation, bone scans, and white blood cell transfusions. Prior to his retirement in 2013, he enjoyed a 40-year career with Travelers Insurance Company. Now, he fills his time with gardening, golfing, line dancing, and cherishing moments with his grandchildren and family. Allen spoke about his personal journey with prostate cancer, starting in 2003. Allen discusses his diagnosis, treatment, including surgery and radiation, and the challenges of clinical trials and medication. He emphasizes the importance of healthcare equity, particularly for African Americans, and highlights his participation in trials despite concerns, showing the value of patient representation and awareness in medical research.

Scott Douglas Jacobsen: So, Bill, should we start with the personal aspects or clinical trial information? Let’s start with your journey. What is your personal experience as someone living with prostate cancer? How did you find out? How has it progressed? What is the process like for men who may not know what to look for? 

Bill Allen: Let’s begin in 2003. I had an annual exam. It’s important, especially after the age of 50, to have an annual check-up, which for me includes a digital rectal exam (DRE) of the prostate gland performed by my general practitioner. During that exam in 2003, I was advised that there was something slightly unusual about my prostate. My doctor wanted me to follow up. This was toward the end of the year, around October or November 2003. In 2004, I scheduled an appointment with a urologist who conducted further tests, including a biopsy. About a week or so after the biopsy, I was informed that I had prostate cancer.

Another indicator was my PSA level, which had risen to 12.5. That was another signal to my physician that further investigation was needed. My Gleason score came back at 7, with the highest score being 10, indicating that the cancer was moderately aggressive. So, I had to make some treatment decisions. In 2004, I was advised about the various treatment options available for prostate cancer at that time.

Not understanding what prostate cancer entailed, all I heard was the word “cancer,” and it hit me hard. I was overwhelmed with distress, depression, anxiety, and concern. It was traumatic. I remember going home that day; my wife, an educator, was at work. I have two sons—my oldest was in college in 2004, and my younger one was also away at school but had come home. The news just knocked the wind out of me.

Later, my wife and I met with the urologist, and they walked us through several treatment options. There was a range of therapies, including brachytherapy (seed implants), radiation, a prostatectomy, or a combination of radiation and hormone treatments. It took some time, but by May, I decided the best option for me was to have the cancer surgically removed from my body. I underwent a prostatectomy.

Back then, the procedure was more invasive than it is today. I like to say they “deleted” you. It’s a serious surgery. Nowadays, it’s done robotically, requiring just a small incision to remove the gland, and patients recover much more quickly. But in my case, they had to perform traditional open surgery. I stayed in the hospital for several days and went home with a catheter and medication. A home healthcare nurse visited to ensure my recovery was progressing well. The healing process took about eight weeks, and that’s the summary of my journey.

That was in 2006. I returned to work, and around 2010, my PSA rose again. The urologist, who was my primary caregiver at the time, had been monitoring me with periodic PSA blood tests. When my PSA began to rise, they recommended radiation. This meant they needed to radiate the prostate bed, which is the area where the prostate gland had been removed. They believed that some cancer cells were still present in that area.

I received treatment at Virginia Commonwealth University’s Massey Cancer Center in Richmond, Virginia, where I was living at the time. I underwent about 36 radiation treatments.

Jacobsen: Thirty-six treatments? How often were those?

Allen: Yes, 36 treatments, roughly one per week. During this time, I continued working, traveling, and flying for my job. I would come back home on certain days, often on a Thursday or Friday, to receive the radiation treatment. Fortunately, I experienced no major side effects and could continue working throughout the treatment.

During this time, one of the clinicians asked if I wanted to participate in a clinical trial. The study involved testing several drugs to determine if they could mitigate any side effects, lower my PSA, or prevent the spread of cancer. I considered it, and they provided me with all the documents and consent forms. I reviewed everything with my wife since this was all new to me. I’d never participated in a clinical trial before.

I had some reservations, especially being an African American man. I had attended an HBCU, Xavier University of Louisiana, in New Orleans, and I was aware of the troubling history of clinical trials that adversely affected African Americans. We all know about cases like Henrietta Lacks and others who were unknowingly subjected to experimentation.

Jacobsen: Given that history, what made you go through with it?

Allen: Despite my concerns, I decided to participate in the trial. I wanted to do everything I could to prevent the cancer from spreading, and I also saw the potential benefit for others if the drugs proved effective in treating prostate cancer. I started taking two drugs alongside the radiation. After my 36-week course of radiation ended, I continued in the clinical trial, going back to the clinic regularly for blood tests and check-ins with the clinician about how I was feeling and any side effects.

For the first few months, everything seemed fine. But about six months in, I started feeling off—exhausted and tired when I normally wouldn’t be. I shared this with the clinician and eventually decided I didn’t want to continue with the trial.

They said, “We’ll take you off. Come back, and we’ll still monitor you for a few visits. After a while, you should feel okay.”

And that’s what I did. So that was my introduction. The hardest part was making the decision and then dealing with what might have been a side effect, but I didn’t want to continue. I’m not sure whether that combination of drugs had any long-term effects on my condition. That was in 2010.

I’m still working, but my PSA rose again. I kept talking with my urologist, who was still my provider. That’s when I started hormone treatments, specifically with a drug called Lupron. It reduces the testosterone in your body, so the cancer doesn’t have the fuel to grow.

However, Lupron has other effects. It’s almost like medical castration, as it impacts your testes, testosterone levels, and muscle mass. It drastically reduces your testosterone, changing your physical makeup. I was getting the shot every three months, and it worked. Since 2010, I’ve been on hormone therapy. Over time, I moved from getting the shot every three months to now getting it every six months. Since moving from Virginia to Maryland, I now see a local urologist who manages my treatment.

Up until 2020, my PSA remained stable. It’s not at zero, but at about 0.1 or 0.2, which is very low and good. That means the cancer hasn’t metastasized or spread to other organs. Prostate cancer tends to attack the lymph nodes or bone marrow, which is where it does the most harm.

So, I’m trying to get my chronology straight here—I’m still on androgen therapy, and now I’ve been advised to consider oral therapy. There are two drugs I could take that would help minimize the rise of my PSA and specifically target the cancer proteins. At first, I didn’t want to take the drugs because their side effects seemed worse than the remedy itself.

I looked at one drug and read the detailed information about medications—the side effects, how to take it, when it was developed, and data from the trials. When I read about these oral drugs, I focused on how many people like me were in those studies.

If a study included 1,200 participants, the information would tell you what happened to those men. Some got sick, and some even died, though not necessarily from the drug but from the cancer itself. However, I didn’t see many participants who looked like me, and that made me hesitant about taking the drug because these drugs are a lot more powerful. So, I decided to wait and see instead of starting the oral therapy right away.

But eventually, I had to come around and make the decision to take oral medication to help with my prostate cancer. As of today, I’m on oral chemotherapy, and I still take my androgen or Lupron shots. I take four tablets a day. The cost of the oral medication is about $15,000 a bottle, which makes each pill worth around $120.

That was another reason for my hesitation. I’m retired, and while I have retirement income, covering that cost significantly impacts my life moving forward. It becomes a situation where you ask yourself: do you choose to live to die or die to live? I guess that’s the analogy I would use if you’re debating whether or not to take a drug.

Fortunately, the urologist and the practice I’m with have a unit specializing in writing grants. They help patients access funds to cover the cost of treatment for certain high-cost diseases. The funding is based on the disease, and they’ll cover some of the cost. I’m a Medicare recipient with a supplemental insurance plan, which helps, but my monthly copay was still close to $2,000.

That’s where the PAN Foundation came in. I learned about PAN, and they agreed to cover the cost of the medication for a year. You have to reapply for the grant every year, but I’m thankful to have a provider that offers this kind of service to its patients. And I’m also grateful for organizations like PAN, whose mission is to help individuals with diseases by covering the cost of medications that would otherwise be unaffordable.

With PAN’s help, I’ve been able to manage. My cancer did metastasize, and it spread to a lymph node in the upper lateral part of my body. In 2020, I had additional radiation to address the spread, and that seemed to work. It reduced the cancer in the lymph nodes, and I haven’t had any further problems.

The major issue I haven’t faced is that it hasn’t spread to my bones, which is a good sign. So, the decisions I’ve made about my health, along with the advice of my doctors, seem to be working. They provide much guidance, and I listen—when I say “sometimes,” it means I don’t always want to jump into the next suggested treatment immediately. There are some really exciting advancements in the treatment of prostate cancer in men.

There are many drugs available in the marketplace, and as your cancer progresses, you can move to the next stage of treatment. The goal is to keep your PSA from increasing and prevent the spread of the disease. So, when I say I listen to my doctors, they offer me various therapies. Still, it’s my choice to determine if I need that therapy at a particular moment. That’s always my question—do I need to do this now?

Where do I need to be in your health situation to start on a new plan or a new drug? Is there a point in the future where it might be too late if I wait too long, or could I delay starting too soon? These medications can significantly affect your physical health and well-being.

These drugs can make you tired, cause headaches and fatigue, and, in some cases, even lead to heart attacks or other cardiovascular issues. So, I want to be very careful about the approach I take. If I can manage my health as it is right now, that’s what I feel comfortable doing.

But as long as my doctors stay on top of things—they run CT and bone scans—they’re ensuring my bones are strong. I’m on calcium, vitamin D3, and other supplements to help support my immune system. I’ve taken a real interest in maintaining good health because I feel good.

I don’t have any pain from the prostate cancer. I can do my gardening, I can do my line dancing, I can go on trips, and I can spend quality time with my family and grandkids. That lets me control my feelings about what I can and can’t do, if that makes sense.

Jacobsen: That makes sense. Now, let’s focus for a moment on an important issue. Studies show that around 90% of people of colour in the United States trust healthcare providers. Still, participation in clinical trials is much lower. Can you share your thoughts on this and your reasons for encouraging more participation, especially within African American communities?

Allen: There are several factors at play. The first is perception. Many people don’t have a positive reaction to clinical trials. I had a positive experience with clinical trials. Most men—around 83%—view clinical trials as something positive. So, the general perception is good.

However, when it comes to participation, people want more information. In a study conducted by PAN, 58% of men of color said they would participate in clinical trials if they knew more about them. The survey also revealed that motivation plays a key role. For me, part of my motivation was helping others. Similarly, in PAN’s study, 40% of men of color said they would participate because they knew it could benefit others.

Trust in the provider, trial representation, and awareness of how clinical trials can break down barriers are critical. In the African American community, about 34% said they would participate, which is encouraging. They need to know when, where, and how it’s done.

The PAN Foundation has been working on this through its initiative. They’ve developed an “Opening Doors to Clinical Trials” website with a trial finder. Patients can search for clinical trials based on their specific disease and location—down to the zip code. Universities or clinics often run clinical trials, so it’s important to make this information accessible.

They’re run by different disease organizations. As I mentioned earlier, I have a brother, a nephew, and a cousin—she’s female—who participate in clinical trials for a degenerative disease called ataxia, which runs in my family. This disease originated on my mother’s side. Four of her siblings, including herself, passed away from this disease.

I have two brothers who have ataxia. One is in a clinical trial, and the other has passed away. So, I can see the value of having representation in clinical trials, even within my family. My family members’ motivation is to help any other relative who may face this disease in the future, which is crucial because this condition is genetic.

Awareness is key here—knowing where to find information is essential. From what I’ve learned, the PAN Foundation has prioritized patients in its efforts, ensuring equitable access to healthcare for individuals with various conditions.

Jacobsen: Bill, thank you very much for your time today. I appreciate it.

Allen: Thank you. I appreciate being part of this. Well, is that enough information for you?

Allen: Yes, this is good. Including a personal story is quite nice. It adds a dimension to the discussion that makes it relatable.

Jacobsen: It’s a long personal story, starting back in 2003. That makes it even more helpful. Because for me, I didn’t know the journey could be so prolonged. I thought it was a matter of surgery or treatment, and then it’s over. But now I see how much it has evolved. Your story also reduces the stigma around trials and doctors, especially when you mention how surgery techniques have advanced—from being invasive to now being laparoscopic That’s helpful.

Allen: Yes, it’s quite an improvement.

Jacobsen: Thank you again.

Allen: You have a good day.

Jacobsen: You too. Take care.

The PAN Foundation’s recent survey, conducted in collaboration with The Harris Poll, reveals a strong interest in clinical trials among underrepresented communities, including people of color and LGBTQIA+ individuals. The data highlights that while 83% of people of color and 86% of LGBTQIA+ respondents view clinical trials positively, a significant gap exists in participation rates. A major barrier is that many have never been invited to participate, despite showing interest. The survey also found that most participants trust their healthcare providers, but only 22% of people of color and 20% of LGBTQIA+ individuals have had discussions with their doctors about clinical trial opportunities.

In response to these findings, the PAN Foundation has launched the Opening Doors to Clinical Trials initiative, designed to increase diversity and participation in clinical trials. This initiative offers resources like the ComPANion Access Navigators, who provide personalized support, and an online trial finder to help individuals navigate the process. By addressing barriers such as medical mistrust and logistical challenges, the PAN Foundation aims to create a more inclusive environment for clinical research, ensuring underrepresented populations have the opportunity to participate and contribute to advancements in healthcare.

For anyone ready to take the next step in learning more about clinical trials and how to get involved, visit the PAN Foundation’s Opening Doors to Clinical Trials initiative at clinicaltrials.panfoundation.org.

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