Conversations With Prostate Cancer Experts

Leave a comment

The Making of A Cancer Activist

Joel Nowak is a prostate cancer patient and well-known cancer activist.

Tell us about your own prostate cancer journey and how you came to cancer activism.

Mr. Joel Nowak: Part of my journey to being an advocate pertains not only to having prostate cancer and recurrence but also to the fact that I had multiple primary cancers. I currently have five different primary cancer diagnoses.

I was treated initially for prostate cancer at the end of 2001. I had a Gleason 3 + 4 with a PSA of only 4. I had surgery. I went back in five years and my PSA went crazy, up into the 80s.

At that point, it was a recurrence. We did a bunch of scans. We identified a couple of lymph nodes in the prostate bed, as well as a very significant and large tumor in my kidney. At that moment, the assumption was that I had a prostate cancer tumor in the kidney and that the kidney had stopped functioning and was basically dead. I had a nephrectomy, which is the removal of the kidney. We found out that it was a different diagnosis: clear cell renal cancer.

Looking back, I see that prostate cancer recurrence saved my life because that’s how I found out that I had renal cancer. If it weren’t for my prostate cancer recurring, I would not be here today.

I was in my early 50s, so I was fairly young at the time. I knew I was metastatic with prostate cancer and had been diagnosed with another primary cancer. Knowing that I was metastatic weighed very heavily on me. There was no way to use that C-word—cure—which I don’t like to use. I looked desperately for people in a similar situation. I refer to it as looking like me, but I don’t mean physically. I mean people in their 50s, with a kid in high school, a kid in college, and metastatic prostate cancer that was incurable and possibly terminal.

I found myself becoming angrier and angrier.

Not only did I have metastatic cancer, but also I felt very alone in the sense that I couldn’t find anybody in a similar situation. I went from one cancer support group to another. Though I lived in metropolitan New York where there are options, I still could never find anybody I could relate to directly, someone with a similar experience. I found plenty of older men who were worried about whether or not they would make it to their grandchild’s wedding and things like that, but for me, that had no relevance. I became more isolated, lonelier, and angry.

One night, I was inappropriate with the group leader of one support group. I was overly aggressive and blamed that person for what I perceived as my situation. Instead of reacting to my aggression, the person just sat back in their chair, looked at me, and said, “Why don’t you do something about it?” I went home and discussed it with my wife who tried to stabilize me. “Why don’t you,” she said. I got angrier at first and just stewed for a while.

It has been 10 years, but when I went to bed that night I thought I was going to die within a few years. It’s common for many men with recurrence or metastatic cancer to wonder if they’re going to die in a year or two. I felt terrible and angry. I’m not really an angry person, but I had become a very hostile person.

When I woke up the next morning, I decided that I didn’t want to live my life feeling that way. I was going to find a way to let go of that anger and do something about it. That’s how I got involved with activism.

You decided to channel all the fear, anger, and anxiety into something positive.

Mr. Nowak: Yes. I think that’s what it was. I’m not saying that I still don’t have moments; I do. And since then, I’ve had two additional primary cancer diagnoses. One of them was a rare cancer. But the prostate cancer was the only one that caused that kind of emotional response, probably because that is the only one, so far, that is metastatic.

I spend a lot of time with prostate cancer, but I also work with other cancers—metastatic, advanced, and progressed prostate cancer.

Not a member? Join us.

Leave a comment

Your Number One Fan Is Looking for Love


AG.headshotWellness speaker Angela Gaffney teaches simple and effective strategies to help people achieve health, increase productivity, and live stress-free while reaching their personal and professional goals.

She offers her tips for nurturing your Number One Fan.

Picture your number one fan, the one who supports you most in life. The one who shows up no matter your mood, how tired you may be feeling, or how much pain you may be experiencing. Whatever the situation, your number one fan is there for you. I’m sure many of you pictured your spouse, partner, or maybe a parent or best friend. While these people are all great supporters in your life, your number one fan is much, much more! Your number one fan is your body.

We hurry through life at such a fast pace that we often forget to support the one that supports us most! Sometimes it takes a diagnosis or health crisis before we realize that our body may need more from us than what we’ve been willing to give. It was true for me, and it was true for many of you. Caring for your body goes far beyond just eating well and exercising. It takes commitment and conscious effort to ensure you’re giving your body all it needs to heal and achieve optimal health.

We all need to practice these four principles to care for our bodies through diagnosis, treatment, and in lifelong health.

Build Awareness

Daily habits are so second nature that it’s easy to underestimate the impact they have on our health. Start tapping into your daily habits and assess whether they’re offering you the supportive environment your body needs to heal and be well. If change is needed, take it one step at a time.

Consciously Choose

We often make decisions, big and small, out of convenience, haste, or emotions we’re feeling. It’s time to pause and choose differently. Before every decision you make, stop and ask yourself: “What will this provide me?” Just answering this one question will help you make a conscious choice and to move forward in a healthy direction.

Create a Supportive Environment

It’s hard to avoid sugar if there are cookies and cake in the kitchen. Building a supportive environment is of greatest importance if your goal is lifelong health. Replace processed foods with whole, fresh foods that nourish the body. Say no to unnecessary obligations to give yourself space and time to heal. Share your needs with your friends and family so they too can support you in this journey. Everything in our environment— the food we eat, the toxins we’re exposed to, and the stress we feel from everyday life—impacts our health. Do your best to create a healthy, supportive environment for you and your family.

Above All Else, Be Kind

You are on a health journey, which means some days will be easier than others. Use positive affirmations and encouraging words to support yourself in healing and lifelong health. If you veer off track, assess what you’d like to do differently next time and move forward. You have a choice in every matter, and you get to decide how you’d like to participate. Above all else, be kind to yourself in the process.

You are your best advocate! Take care of your number one fan by assessing your current habits, making conscious choices that serve you well, creating a supportive environment, and above all else, being kind to yourself through the process.

To hire Angela to speak at your next event, discuss a wellness program for your corporation, or take advantage of complimentary health tools, please visit

Leave a comment

Crowdsourcing Cancer Funding

In May, Prostatepedia is talking about collaborations within the prostate cancer community.

Not a member? Join us.


Dr. Jonathan Simons, Mr. Andy Astrachan, Ms. Colleen McKenna, and Mr. Tom Andrus are the driving forces behind Prostate Cancer Foundation’s Many Vs Cancer movement set to launch this month.

Prostatepedia spoke with them about the vision behind Many Vs Cancer and how it fits into the Prostate Cancer Foundation’s research funding programs.

How did you become involved with Prostate Cancer Foundation and the Many Vs Cancer movement?

Mr. Andy Astrachan: In late 2013, my family doctor felt a nodule on my prostate during my annual checkup. My PSA was slightly above 1.0 at the time and up slightly from the year before. An MRI was highly suggestive of cancer. I immediately reached out to my friend Mike Milken for advice. Mike referred me to his urologist and introduced me to Dr. Jonathan Simons who runs Prostate Cancer Foundation (PCF). I feel very fortunate to have been able to plug directly into the PCF for guidance.

A biopsy confirmed that I had prostate cancer. A month later, I had surgery. A few months later, Mike asked me to join PCF’s Board. I am honored to serve on the board for the benefit of all prostate cancer patients.

Ms. Colleen McKenna: As Andy said, he was diagnosed several years ago with prostate cancer and subsequently joined PCF’s Board because of his relationship with Mike Milken.

When Andy joined the Board, the primary focus of PCF’s communication was to the medical, research, and scientific communities. As a patient, Andy felt that PCF should also be focused on communicating with patients in a language that can be easily understood to provide them with the same level of information that he received from PCF. Andy understood instinctively that by tilting communication to the patient, PCF would not only help all patients in their times of need, it would also be able to connect and mobilize a massive community.

Step 1 was a brand-new website which was launched in October 2016. Step 2 was an appeal to the community of patients and those who love and support them to crowdfund the money required to expedite a cure. The appeal became a global movement of millions of people called Many Vs Cancer. PCF has done amazing work funding the most critical research over the last 24 years. The results of that work put us on the precipice of a cure. Now is the time to finish the job.

Andy recruited me to work for Many Vs Cancer and I immediately thought of involving Tom Andrus, with whom I’d worked at a company called Symantec.

Mr. Tom Andrus: In 2010, my wife Anne was diagnosed with Stage 4 appendix cancer. It had spread throughout her abdomen. We did everything that well-informed, connected people do. We worked with all the major leading hospitals. We did everything that we could do

One of the things that she said to me was, “I’m hopefully going to be one of the first people cured of this. If not, I’ll be one of the last to die from this cancer.” She made it about two years.

At the time, precision medicine just wasn’t there. You could see, though, that if we knew enough about people’s cancers and their tumors we could come up with ways to precisely treat and not just use blanket radiation or surgery or chemotherapy.

Colleen introduced me to Dr. Simons who explained that in the last five years the prostate cancer arena has changed radically: there are now 19 precise targets in prostate cancer and multiple trials in place trying to figure out what type of treatments you can do for each of those different genetic markers. Dr. Simons also explained that because of genetic overlap, the work we do in prostate cancer research will improve treatments in many other cancers, including, colon, ovarian, and breast cancer.

When Colleen reached out to me, I was ready for something fulfilling to do. Something that would change the world. After listening to Dr. Simons and Andy Astrachan explain their vision for PCF digital to democratize the dissemination of information to all patients and for Many Vs Cancer to empower all patients to participate in curing cancer, I felt compelled to sign on. I have a long history of building tech companies. I thought if I can put what I’ve learned into such an important cause, we could educate patients about the power of precision medicine, empower them to participate in fundraising, and engage them in the science, that would be the best thing I’ve ever done.

What is the Prostate Cancer Foundation’s mission?

Mr. Astrachan: PCF is the world’s leading philanthropic prostate cancer research organization and is certainly among the most effective cancer research organizations of any type in the world. For the past twenty-four years, PCF has raised over $700 million for research, funding over 2,000 groundbreaking research programs at over 200 cancer centers and universities in 19 countries. We’ve funded 3 Nobel Laureates and many hundreds of leading scientists in the fields of genetics, immunotherapy, and big data analytics from cloud computing.

Since inception, PCF has been a pioneer in new drug development, providing key funding for FDA-approved treatments that improve survivorship. Thanks in large part to the work of PCF researchers, in the last decade six drugs for men with advanced prostate cancer have been FDA-approved. Of those six drugs, five were FDA-approved because they actually prolonged patients’ lives, rather than simply easing their symptoms.

The $700 million raised directly by the PCF has attracted an infusion of more than $10 billion additional funding for prostate cancer research from government agencies, venture capital investments, the pharmaceutical and biotechnology sectors, academic research centers, and other philanthropies. In the United States alone, these new treatments have saved the lives of hundreds of thousands of men.

PCF has reduced US prostate cancer deaths by 52% in the past 20 years according to American Cancer Society statistics.

Mr. Andrus: Mike Milken founded PCF when he found out that he had prostate cancer. At the time, there was very little, if any, prostate cancer research going on. He set up the foundation with some very forward-thinking thoughts and processes on how research should be funded.

We’re fast. We’re open. Our approach is to get people funded quickly. We promise to decide on an applicants’ grant proposal in 60 days as opposed to the year or more it takes for a big NIH grant. We also require all our researchers to share their information with PCF in real time and with each other, even before they’re published. We select and coordinate Dream Teams across different organizations and sometimes continents to conduct research.

PCF specializes in early-stage or venture funding of research ideas. A lot of the recently-approved prostate cancer treatments came from our early-stage funding after which drug companies, governments, and other institutions put up a lot of money. But it is PCF that gets the ball rolling by funding the initial science. Thereafter, every dollar we put into research ends up being matched 20 to 30 times by the government or a pharmaceutical company to get drugs to market.

Ms. McKenna: Mike Milken took the model he utilized in his investment career and applied it to scientific research. PCF employs a venture philanthropy model that identifies those researchers with the greatest promise. Included in this model is PCF’s Young Investigator Program. Like a farm team in baseball, the PCF Young Investigators are the brightest young scientists around the world who are identified early in their careers and supported with smaller grants that give them a chance to develop their science. A number of Young Investigators have gone on to develop important research.

Talk to me a little bit more about the kinds of research you fund?

Dr. Simons: One of the best examples of our international collaborations is the PCF Dream Team led by Dr. Arul Chinnaiyan of the University of Michigan, Dr. Charles Sawyers of Memorial Sloan Kettering Cancer Center, and Dr. Johann de Bono at the Institute of Cancer Research/Royal Marsden in the United Kingdom. The Dream Team was awarded $10 million and has sequenced the genomes of over 500 castration resistant prostate cancer tumors and identified the prostate cancer genomic landscape.

Through this team and another Challenge Award team, we supported de Bono’s TO-PARP trial that found patients with DNA damage repair mutations may benefit from treatment with the PARP-inhibitor Lynparza (olaparib). (See Prostatepedia June 2016 for a conversation with Dr. Joaquin Matteo about the TO-PARP trial).

That Dream Team also found that 1 in 9 metastatic prostate cancer patients have cancers caused by inherited DDR mutations, which has implications for treatment. Family members should also be screened for the mutation.

Current treatments we have funded include Zytiga (abiraterone), Xtandi (enzalutamide), and Taxotere (docetaxel.)

We’ve also funded the development of a precision medicine platform for prostate cancer and the development of prostate cancer organoids, or laboratory-grown mini-tumors that serve as avatars for studying tumor biology and drug sensitivity.

Other promising treatment approaches we are funding include therapies that target mechanisms of resistance to androgen receptor targeted therapy, such as inhibitors of glucocorticoid receptor (GR) therapies, which target constitutively active androgen receptor-variants and extreme androgen receptor-pathway inhibition.

We’re also funding several immunotherapies that will enter clinical trials this year: CAR T cells that target Prostate-specific Membrane Antigen (PSMA) and Prostate Stem Cell Antigen (PSCA) and vaccines against Prostatic Acid Phosphatase (PAP).

We’re funding several clinical trials that look at combining radiation therapy with immunotherapy, as radiation may sensitize tumors to immune-killing and promote the activation of immune response. (See Prostatepedia April 2017 for a discussion with Dr. Emmanuel Antonarakis about such a trial.)

Lastly, we’ve recently launched an initiative to bring precision medicine into the Veterans Administration (VA) system, so that every veteran has the best level of care available. The sacrifices American veterans have made for all of us have earned them not only our everlasting respect and gratitude, but also the best standard of care and the benefits of the latest medical breakthroughs. The United States Department of Veterans Affairs (VA) works to make sure they receive both—and more.

We plan to invest $50 million over the next five years in a precision oncology initiative to expand prostate cancer clinical research among Veterans to speed the development of new treatment options and cures for prostate cancer patients.

Approximately 12,000 veterans are diagnosed annually with prostate cancer. Given the demographics of our veterans, prostate cancer is an especially urgent issue. One in eight men will be diagnosed with prostate cancer. It’s the most frequently diagnosed cancer among veterans, accounting for a third of all male cancer cases.

African-American men are 64 percent more likely to develop prostate cancer than any other race or ethnicity, and they’re 2.4 times more likely to die from the disease. Yet we know little about the biological reasons for these disparities.

The timing of this partnership is crucial: never in history have we been so close to solving so many medical research challenges.

Can patients donate to specific areas of research or simply to your organization as a whole?

Mr. Andrus: Right now, they fund the Foundation directly.

Ms. McKenna: We haven’t made a concerted effort to market PCF to the general public. Our Board feels that PCF is the best-kept secret in medical research. But that is now about to change with the launch of the Man Vs Cancer movement. In the past, our focus has been on relatively larger donations that are not earmarked specifically with the exception of grants in support of a specific young investigator or a Dream Team. That too will change with Man Vs Cancer, which will allow more targeted donations by scientist, by gene, or by research center.

Mr. Andrus: One of our goals is to empower people to not only give money, but also to participate.

The Man Vs Cancer movement is your brainchild, Mr. Astrachan. Can you speak a bit about your vision?

Mr. Astrachan: As a PCF Board member, I quickly understood that the rapid pace of medical research demanded greater funding than our historical fundraising model allows. We have now identified all 19 gene targets and their biochemistry in driving prostate cancer. We finally have exact blueprints for precision cures and the miraculous science of how to target genes is thriving. And we have identified the researchers capable of doing this kind of research. This is the golden age of prostate cancer research and now is the time to fund aggressively and finish the job.

PCF now stands on the precipice of curing prostate cancer. Prostate cancer will be the first major cancer to be cured.

At this point, it’s all about money. At one of the earliest Board meetings I attended, Dr. Simons made a compelling case for the idea that $1 billion in venture funding over the next 5 years would be sufficient to put next generation precision drugs into development for all 19 genes that can cause prostate cancer.

When I heard that I said to the Board, how hard can it be to raise $1 billion over the next 5 years? Because $1 billion over 5 years is 4 or 5 times what PCF historically raises, most if not all, of the Board looked at me like I was crazy.

But I am not crazy. I was just doing a different calculation than they were. I understood that by harnessing the power of technology, social media, social networking and crowdfunding, we could mobilize a massive global community of prostate cancer patients and their loved ones into an army with the collective financial power to fund our own cures.

As Dr. Simons talked, I made calculations on the cover of my board book. That math is compelling. There are roughly 3 million prostate cancer patients in the United States and many millions more worldwide in addition to many multiples of that number who love and support us.

That is a huge pool of people. If only 183,000 patients—a tiny percentage of patients—give $100 a year for 5 years and recruit 10 people to support us with the same financial commitment, that amounts to $1 billion.

With that calculation, Man Vs Cancer was born. Man Vs Cancer aims to reach the millions of patients worldwide and the far greater number of people who love and support us. The Many Vs Cancer global movement is by far and away the most ambitious and most powerful patient-lead community ever assembled for any disease by anyone for any purpose anywhere. Crowdfunding the last dollars needed for research from a vast audience of patients and our friends and loved ones means that by many of us doing a little, prostate cancer will be cured for everyone without overburdening anyone.

Some of us will give money, some of us will organize fundraising events and teams, and some of us will do both.

As a patient, I know as well as anyone that all patients are willing to invest in research for their own cure as long as they have justifiable confidence that they’re funding the right research being done by leading researchers and administered by the acknowledged global leader in funding prostate cancer research. I believe our community will respond generously when it understands how close science is to delivering effective medicines, that many PCF-funded breakthroughs are currently occurring in small trials around the world, and how pivotal PCF has been—and will continue to be—in virtually every prostate cancer treatment advancement since 1993.

When does Many Vs Cancer launch?

Ms. McKenna: Mid May. We’ve just asked the first 1,000 members of our community to raise their hands to form teams and stand with us on Day One of launch. I thought it was going to take two months to get the first 1,000 people, but we’ve signed on almost 1,000 in a couple of days. We’re allowing people to take part in their own cure, to have a voice in the battle.

People are sharing their own personal stories. These stories of courage, a fighting spirit, and a strong desire to make a difference are amazing. It reminds me every day that what we’re doing is important and right.