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by Claremary P. Sweeney   |   March 15, 2018


It’s snowing today in Rhode Island and it’s the third major storm we’ve had in the past two weeks. But on Tuesday, February 27th, in Washington, DC, we enjoyed an absolutely gorgeous preview of what spring will be like in just a few more weeks.

Charley and I flew to our Capital to attend the Zero Prostate Cancer Summit 2018. It was our second Summit and we were already old hands at what we had to accomplish. Our ultimate goal was meeting with our Congressmen and Senators to lobby for prostate cancer funding within the Department of Defense’s Prostate Cancer Research Program (PCRP) which is part of the Congressionally Directed Medical Research Programs (CDMRP).

(WARNING: There may be a lot of letters used in the writing of this post. This could cause the brain to temporarily go into lockdown. I am still trying to shake off the effects two weeks later.)

Much of our country’s research funding comes through the National Institute for Health (NIH) which focuses on basic research. The money allotted for prostate cancer in the PCRP has a more high-risk, high-reward translational approach. But these monies are discretionary and therefore can be cut from year-to-year. And that is why survivors and advocates from over 40 states take the annual trek to the Hill in the bleak midwinter to meet with our state leaders and their aides to ask for their support.

Zero Advocates are well prepared to make our annual “Ask” through the series of workshops and discussions on health and economic issues, policies, innovative treatments and drugs, education initiatives, and personal stories offered in the first two days of the Summit. Experts are brought in to speak. This year Research Highlights, Promising Drug Therapies, Guidelines in Genetic Testing and Counselling, and the Disparities in Prostate Cancer for African-Americans were main topics on Monday. Landi Maduro’s documentary, The Silent Killer: Prostate Cancer in the African-American Community was screened and discussed on Sunday evening.

On Tuesday morning, we met early to get our packets and head for the Hill. We were told to dress appropriately which created a dilemma. I had brought along business attire but I was conflicted as to which shoes to wear. And this is where choice could make all the difference, as it is a very long day moving from office to office, building to building. I chose to be stylish and wear my grey, suede dress boots. The comfortable Brooks cross trainers were tucked into the Zero bag just in case. I eventually changed footwear after walking at least a hundred miles and falling only once. (I did not get hurt as I am very well padded.) But I’m still paying for that poor choice as I type this blog.

And that is the point of this whole post. We make choices and sometimes they are not the best ones for our health and well-being. Throughout the workshop sessions and discussions, men related their stories; stories they would bring to their Reps. And many stories had a common thread – the need to be educated; the need to be aware of what is available for treatment; the need for resources to help guide patients and loved ones through one of the toughest journeys they’ll ever take together.

My husband Charley’s story is all too familiar. He was told during a regular checkup that his Prostate Specific Antigen (PSA) was doubling. My husband’s reaction was, “What is a PSA?” Answer: It is an indicator, a marker, that the proteins associated with prostate cancer are in your system. Too many men are not even aware of how important a blood test for PSA is. And some never even get as far as a doctor’s office. Some do not know their options when diagnosed. And some are given options but choose to do nothing.

It is one thing to make a choice when you have all the information necessary. It is another not to have the facts and the resources and the support available which is crucial to making informative decisions; decisions which will ultimately affect quality of life. Choices which could mean the difference between life and death.

Charley and I stumbled through those first years. I had done research online. When Charley’s PSA kept rising (at one point it was at 174) after his operation and radiation treatments, his surgeon told him he only had a few years to live. His cancer was aggressive. I told his doctor we did not accept that. I knew of drugs, treatments and clinical studies that were cutting edge. Charley was in his fifties, healthy (except for the cancer), strong, and disciplined. I promised if he were placed in the best studies (no placebos) he would be the first man every cured of advanced prostate cancer. And they agreed.

Charley has been through so many studies, each one buying us a little more time. But four years ago he underwent immune therapy using the drug Provenge. Immediately after that, he was placed in a study using Xtandi and Zytiga. And soon after that, his PSA dropped from 24 to under 0.1.  The cancerous lymph nodes and then the tumors on his rib cage began to diminish and then, disappear. The bone started to regenerate.

He’s been in remission for over three years. This is a five-year study. It entails flying to Baltimore every 28 days to be poked and scanned, to consult with a team and receive the drugs. And it is well worth the travel, the inconvenience, the discomfort, the cost. He is alive, healthy and well. We cherish every moment we’ve been given.

And this is where Zero comes in. We navigated these waters together. We were alone for many years and then a nurse connected us with the Zero Prostate Organization. They helped to defray some of the costs. These drugs are expensive. In the United States, Xtandi is $7,400.00  a month and Zytiga is $8,200.00.  And the only reason these drugs were even discovered is because of the innovative research financed by PCRP. But the most valuable resource Zero provides is an opportunity to bond and a place of fellowship for men who understand what it is to be given this diagnosis.

Zero saved Charley’s life and when we finally get to the study which will result in a cure, they will have saved thousands of lives to follow. We will see the first Generation 0 – the first generation of men without prostate cancer. And when there is a cure for prostate cancer, other cancer cures will follow.

Making the right choices is critical on so many levels. I’ll soon get over having aching feet. But the work done by organizations like Zero Prostate Cancer is crucial in helping men make the right choice – one which will give them more quality time with the people they love. The people who cherish them.

Please share this website with someone who may be going through this journey. It can make all the difference into world. It already has.

Originally published on Around ZuZu’s Barn.