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Patient StoriesProstate CancerSurvivorship

How I Learned to Be Vulnerable: Sharing My Prostate Cancer Story Helped My Healing

A decade after his son passed away from a rare form of bone cancer at age 16, Mark DeLong was diagnosed with prostate cancer. He learned, among other things, the healing power of being vulnerable and sharing personal stories.
December 2021 Vol 7 No 6
Mark DeLong
Vancouver, Washington

We all have stories of cancer, sometimes as the person living with cancer, sometimes as the caregiver to a family member, or sometimes as a bystander watching friends on their journey.

For a long time, my cancer story was on the outside, looking in. My son Peter was diagnosed with a rare form of bone cancer when he was 14. I drove him to doctors’ appointments, watched him undergo radiation therapy, and sat in the chair next to him as the doctors told him he did not have much time left. He passed away in 2005, at age 16.

A decade later, I found myself on the inside, looking out, living my own cancer story.

First Physical Exam in 10 Years

In 2015, I had my first physical exam in more than 10 years. At that time, my blood tests were fine, but when I went back the following year, the prostate-specific antigen (PSA) test showed that my PSA level had risen dramatically. I then had to go back every 4 months for blood work, and my PSA levels just kept climbing. After a few additional PSA tests and a biopsy, I was diagnosed with prostate cancer.

When you enter the cancer space as a patient rather than as a loved one or a caregiver, it’s an entirely different thing. It was hard not to go to a dark place mentally after my diagnosis, knowing that cancer had already taken the life of my son.

Focusing on the Good

Then a friend offered me the advice to “live alive and well.” If you live focusing on your cancer, then that consumes you, he told me, but if you live alive, knowing that you have faith in God, and you have great family support and friends, then you can live through whatever you face.

To this day, that is probably the best advice I have received from anyone. Whatever you seek in life, you will find. If you are fixated on the one thing you are struggling with, you are not able to take care of yourself, or of those around you.

So, I chose to focus on the good in my life, and the things I had control over, such as preparing mentally and physically for the treatment that was coming.

Aggressive Cancer

Although my cancer was diagnosed early, it was an aggressive type of prostate cancer, which progresses fast, and my doctors recommended surgery to remove my prostate gland.

I tried to get in good shape before my surgery, and after surgery I was compliant with the doctor’s orders. I felt great before surgery, and within 2 or 3 months after surgery, I felt great again. I thought I was cured.

Everything was good for about a year, and then my PSA levels started climbing up again. The cancer had returned. At the time I was feeling so good physically, that it was such a shock to find out that the cancer was growing again in my body. I realized I had not been cured, but rather the cancer was in remission.

My son Peter’s cancer had also been in remission before it returned, so this was too personal and familiar to have the same thing happen to me. My wife and my other children took the news very hard. After losing Peter to a cancer recurrence, would they also lose me the same way?

A Clinical Trial Saved my Life

With my son, Peter, who passed away from bone cancer at age 16.

By some miracle, a woman who was involved in the foundation our family had set up in Peter’s memory, had information about a new clinical trial underway that I was able to enroll in in 2019.

This study was investigating a new way to improve the diagnosis of prostate cancer. It involved a radioactive imaging agent and a PET scan that were used to identify the exact location of the prostate cancer.

This is now known as Gallium 68 PSMA-11, which was the first radioactive imaging drug approved by the FDA for use in PET imaging for men with prostate cancer and PSMA-positive lesions.

This new technology allows doctors to see the precise location of the cancer and whether it has spread to other parts of the body. So my doctors were able to see that the tumor was bigger than expected, and its exact location. This enabled them to target the radiation therapy precisely to the right location and remove all the tumor and cancer cells.

At the time, only 1 or 2 institutions were able to use this technique in clinical trials they run. Being able to enroll in that clinical trial probably saved my life.

After radiation, I started hormone therapy, which lasted about a year. I stopped using this drug at the end of 2020, and since then, all my blood tests have been normal. I have had no evidence of cancer, and I am considered cured, for which I am most grateful.

Sharing Stories Is Powerful

I recently participated in a cross-country relay-style bike ride to raise money for cancer research. During my fundraising efforts, I would often share my cancer story, as well as Peter’s story.

I have found that one of the things that draws people together is stories of vulnerability. Once I started sharing my story, I was amazed at how many people around me began to share their own cancer stories with me.

Some of the colleagues that I have worked with for years have since told me that they had cancer too, or they had a loved one who passed away recently from cancer, and I never knew that! They saw my vulnerability, and were compelled to share theirs.

Hearing people’s stories is powerful. Each year now, I volunteer with a group called Reel Recovery (https://reelrecovery.org/). We take men with cancer out fly-fishing on the beautiful Oregon Umqua River for 2 days and nights. They spend the days with guides like me, teaching and guiding fly-fishing for novices and experts. After a day on the river, we spend the evenings sharing meals and discussing the men’s cancer journeys.

The truth is that fly-fishing is just the draw to get the men out there, to be able to help them learn to share their deep personal cancer story.

Men Learning to Open Up

It is powerful to see men who have never talked about their cancer journey open up to others about their fears, family concerns, and emotional struggles.

Some men can only share a couple of words before they start crying, because they likely have let something out that they have kept bottled up for so long.

By the end of our fishing trip, the change in most men is amazing—they open up, they hug, they connect. After sharing and listening, many men go from living in fear to realizing there is hope.

Several studies have shown that cancer support groups provide patients and caregivers ways to cope, and learn how to try to live well despite having cancer. These support groups help to improve emotional well-being, affecting everything from depression, relationships, and even finances, as patients share their stories and learn from one another.

Support Groups and Survival

Researchers are even studying people with active cancer to see if there is a correlation between living longer and attending support groups. The idea behind this research is that people who are in support groups have a better quality of life, thanks to the knowledge shared and the community that is developed in support groups.

Everything points to the understanding that men should be more open about themselves. As tough as it is for us guys, we need to start the powerful process of being vulnerable. In addition to helping yourself, it also has the potential to help many other men.

GALLIUM 68 PSMA-11

On December 1, 2020, the FDA approved Gallium 68 PSMA-11 (Ga 68 PSMA-11) as the first drug indicated for PET imaging of men with prostate cancer and prostate-specific membrane antigen (PSMA)-positive lesions.

Ga 68 PSMA-11 is used for patients with prostate cancer that is suspected to have spread to another part of the body that may be able to be removed and cured by surgery or by radiation therapy. Ga 68 PSMA-11 is also used in men with suspected prostate cancer recurrence (coming back), based on the elevated prostate-specific antigen (PSA) levels.

Ga 68 PSMA-11 is a radioactive diagnostic agent that is administered as an intravenous injection 50 to 100 minutes before PET imaging.

“Ga 68 PSMA-11 is an important tool that can aid healthcare providers in assessing prostate cancer,” said Alex Gorovets, MD, FDA’s Acting Deputy Director of the Office of Specialty Medicine, right after its approval. “With this first approval of a PSMA-targeted PET imaging drug for men with prostate cancer, providers now have a new imaging approach to detect whether or not the cancer has spread to other parts of the body.”

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Last modified: March 10, 2022

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