Another Brother is Gone, Leaving a Legacy for All

Heroes may slip from our realms, but they are never forgotten

Nearly two years ago, I wrote of the Embrace of the Brotherhood. In it, I described an afternoon I spent with two fellow patients and spoke of how, through mutual concern and caring, men with prostate cancer bond. I wrote:  An embrace from a fellow member of this fraternal order is like no other. Unspoken, and in a way no other exchange can, it says: I wish you peace. I wish you strength. I wish you life.

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Now both men who inspired that piece–Trip Casscells and Larry Stupski are gone. Trip lost his 10-year battle with prostate cancer last fall. Larry, also a wonderful man, friend and philanthropist, left our world on Saturday. Yes, they may be gone, but I will never forget them or the genuine concern they showed for me and my journey with this disease.

Beyond being patients, both Trip and Larry were ardent advocates and supporters of research programs that are delivering better treatments and cures for prostate cancer. Like Trip, Larry participated in clinical trials that will benefit scores of current and future men diagnosed with this disease. As a philanthropist, Larry contributed millions of dollars to ensure that the latest ground-breaking research could move forward. He and his wife, Joyce, sponsored Young Investigators to encourage new, innovative thinkers to commit to joining the prostate cancer research enterprise and Creativity Awards to get novel research ideas off the ground. Larry also helped support one of the first two prostate cancer Dream Teams ever assembled and announced just last year, to drive the promise of precision medicine and oncology for treating this disease. He was also a PCF Board member. Larry and his wife also funded a multitude of educational initiatives through the Stupski Foundation. Selfless comes to mind as a word to describe Larry.

Two down and one left standing. The loss of these two outstanding men could leave me questioning the value of the embrace we shared on that sunny Saturday afternoon in September 2011.

But, it doesn’t.

Through their advocacy, support of clinical trials and research, and heartfelt concern for other patients, I feel their embrace surrounding me… following me through my own journey. Their wishes for peace, strength and life ring as true today–for me, millions of fellow survivors and countless others yet to be diagnosed–as they did almost two years ago. As we continue to make progress I am beginning to understand that their wishes are so much more. They are promises that they leave behind as their legacy.

Larry, we are blessed to have had you walk among us. As I said at the time of Trip’s passing, I can no longer wish you strength and life. But I wish you peace.

Thank you on behalf of so many men and their families. You will not be forgotten.

Yes, Son… I’m Going to Be Alright

Despite a <0.1 PSA reading and testosterone level of 11, yesterday was a discouraging day. 

 

I arrived at my oncologist’s office yesterday afternoon with great anticipation. I look forward to my quarterly visits as if they are a special school outing. I really like my oncologist, who provides a good deal of comfort along the way, and I’ve always liked getting good report cards. This time, I also had to discuss a few concerning items–particularly a 15-pound weight loss in 2-3 weeks without trying and a whole new series of lower back, hip and abdominal pains (some of which I know fully well can still be remnants of radiation).

When I checked in, there was a problem. My appointment had been rescheduled for next Monday. They said I was notified. I retorted that indeed I was not. The poor receptionist must has seen the look on my face and immediately said she was contacting her supervisor. At  that moment, my wife arrived and I told her what was happening. I then took a walk about to try and control the tearful outburst that was welling up inside. You just don’t do things like this to cancer patients. Not when they measure every step of the journey so meticulously…

As I entered the reception area once again, the supervisor appeared and apologized. She could see I was more than upset and asked if I would see another doctor. YES, of course… I have things to talk about!  The Lupron-emboldened being that I can be, also demanded assurances that my next follow-up would be sans co-pay for the snafu. What the heck. After some reshuffling and a small wait, I was given the someone I needed to see.

The good news: My PSA and testosterone levels remain low.

The disappointing news: The oncologist doesn’t like the sudden weight loss, nausea and new pains as well. He ordered new blood work, a referral to a gastroenterologist to see if there are any non-prostate cancer nasties brewing and of course, a bone density test–despite the fact that I live in southern California and choking down enough vitamin D to satisfy a race horse, I am vitamin D deficient. We all have to ask…where the heck it is all going? If the endoscopy comes back clear, then it’s off for another CT.  The last time I had one, the contrast medium ended me up in the cardiac cath lab for a few hours of observation. The fun continues.

I walked out of the office downtrodden. Despite having received my good report card, it was a teary ride home. I kept thinking of that famous quote, “Oh Lord, I’m sick and tired of being sick and tired…” More tests, more waiting for results, more follow up visits. I am just plain tired of this crap. I can deal with the possibilities of cancer. Tell me if it will win or lose and I’d be okay with either answer. It’s the process–two steps forward, one or two back–and the ever present waiting that I find difficult.

As I entered the house and went to my bedroom, I had recovered. As I changed out of my work clothes, my 14-year-old came in and instinctively asked, “What’s the matter dad…?”  I broke down into a flood of tears and explained that I was tired of dealing with cancer. He replied with, “But you’re going to be alright, aren’t you…?”

“Yes,” I said… “of course I will be.” What else does one tell their young man who needs security and reassurances for his future?

However down I may get at times, I still believe. I must believe.

Taking the Wheel Back as Cancer Loosens Its Grip

Scrolling through the men’s prostate cancer page on Facebook today, I realized that cancer can take a back seat.

Those who have followed my musings through the past three years will know I have written, from many angles, about the gripping fear that cancer can impart on our lives. Fear of not responding to treatment and what that means… fear of the unknown… fear of recurrence… even fear of coming off of treatment. It’s real. Sometimes living with the “C” word can be crippling. It can bring us to our knees and drop us into emotional valleys.

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Cancer is now relegated to the back seat and I now feel I have control of the wheel.

We all have our ways of dealing with it. Some of us learn how to dance with it, hoping to stay the leading partner. Others find ways to lock it away. Some embrace it, looking for the silver linings. Whatever it takes. Whatever mix. As long as it works.

Today, while scrolling down the private prostate cancer men’s page on Facebook, I counted a growing number of new members who were pleased to have found and been admitted to the group. But, one entry stood out and made me think. It read: “So this is my last post here. I am dropping the group. Just nothing here for me at this time…”

Of course, many members were sad to see this post and to think they were losing one of their brothers. So much had been shared between him and the others. Bonds had definitely formed through the giving of mutual support. I posted a quick “Stay well…” in encouragement.

And then I smiled to myself. I believe this brother was telling us that cancer was loosening its grip on him.

I understand that. In some ways it’s also happening to me. Instead of sitting in the driver’s seat, cancer is now relegated to the backseat, only occasionally uttering demands and warnings as back seat drivers are wont to do. I now have my hands back on the wheel as my favorite phrase plays over and over in mind mind… I have cancer… it doesn’t have me. More and more, I wonder if the first three words are even true.

Of course, there are still questions… Will and when will my disease recur? How aggressive might it be if it does? I still have more than two years to go before I reach that magic five year survival milestone.

Still, I am more at peace than ever with my once frightening friend. Each day I drive on the road of recovery, the more I feel in control…. the more I feel like a survivor.

Hope to Pass Along

Whether newly-diagnosed or further along in the journey of advanced disease, this new video from Movember gives hope to prostate cancer patients and families.

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The folks at Movember never cease to amaze me. First they manage to turn the act of growing mustaches into funding  for medical research. Then they turn it into a global act of valor. Now they deliver a video every patient and caregiver needs to see:  The Journey to End Prostate Cancer.

This short video delivers a message of hope for patients and declares that prostate cancer researchers around the world are delivering on our shared promise to end suffering and death from prostate cancer. Just five to ten years ago, such a statement would have seemed impossible, perhaps even irresponsible. But with thanks to more than 3 million Mo Bros around the world since they started growing, and every researcher working within the global prostate cancer research enterprise, the statement represents a world within our reach.

Now that’s something worth thinking about. And it’s worth passing along to anyone who might need a word of encouragement.

Cancer Centers Racing to Map Patients’ Genes

Sunday’s New York Times Headline Underscores the Promise of Precision Oncology

 

Sitting on the inside of the research enterprise, it can be easy to forget that many folks might not have heard of, much less understand, precision medicine or precision oncology. In the simplest of terms, the ability to map the genes of cancer patients and determine the specific genotype (variety) of their tumors is rapidly moving oncology into an era of precision medicine where the right oncology treatment is delivered to the right patient for optimal outcome. Less effective treatments are reduced and those that can best target specific tumor types and destroy them can be deployed sooner.

Research teams around the world are moving this new approach forward. Last year, the Prostate Cancer Foundation and Stand Up to Cancer announced two Dream Teams that are focused on this specific area.

First Dream Team announced April, 2012.

Second Dream Team announced October, 2012.

The more I thought about the story, the more I realized this is indeed news for the general public. Deciphering current treatment options is daunting enough, never mind trying to understand what lies ahead. Yesterday’s New York Times’ article takes a look at how some leading cancer centers in the U.S. are investing in this promising area of oncology.

Of the eight medical institutions listed in the New York Times story that are focusing on precision cancer medicine, the Prostate Cancer Foundation is providing anti-cancer research funding to seven.The article included mention of the new Institute for Precision Medicine at Weill Cornell Medical College and New York-Presbyterian Hospital. Dr. Mark Rubin, a PCF-funded researcher is director of the Institute. I recently had the privilege to talk with him about the Institute and precision medicine. I believe the 12-minute video interview provides a good primer on the topic.

In the interview, Dr. Rubin says: “The concept that prostate cancer is not one cancer, but rather many cancers is important for patients and clinicians to think about. This is going to lead us in the direction of breast or lung cancer where there are very well-defined subtypes and known drugs that provide specific responses.”

It is promising to know that progress against all cancers continues at an accelerated pace. We stand at the threshold of an important new era for patient treatment.

“We need to recognize that this is going to be a process of learning and that we need to invest not only in the clinic, but research efforts that support what we do with the knowledge.”

We Are All Fragile. We Are All Vulnerable to Life.

This week’s bombing in Boston reminds us that our place on earth is temporal.

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The horrific news out of Boston represents one of those moments that most of us will remember where we were and what we were doing when we heard the news. I know I was packing house to move to the Netherlands when news of the Oklahoma City bombing flashed on the television screen in April of 1995… I remember my wife’s call early one morning on 9/11/01 telling me that something horrific was taking place in New York.  This week I was sitting at my desk when a colleague spread the news through the office.

Already, the media are exploiting the news and hunting for ratings: do we really need to watch an interview with a janitor asking him how much blood he had to clean up? I think the average person could figure it was a lot. In fact, too much. Each drop of it senselessly wasted.

But there is another lesson in all of this. We are reminded that we are all human and all vulnerable to the unexpected and often unwelcome currents of life. No one went to Boston imagining that they would either die or forever be injured on Monday. But the unexpected indeed happened.

None of us cancer patients–or others with a possibly fatal disease–ever expected to be diagnosed. But we were.

Sure, having a potentially fatal disease makes us see our possible end with more clarity. As humans we are very good at denying our final act will eventually come. But in many ways, we are no different than those who are met with sudden death by accident, terror or biological event. The only difference is that we are given time to ponder our possible demise. Whether one sees that as a blessing or a curse is a matter of personal opinion. Like all our fellow beings on Earth, we understand our time will come. We are just given notice that it mightcome sooner than later.

Random thoughts at a sad time.

My prayers to all the victims, survivors and families affected by Monday’s bombing at the Boston Marathon.

PSA Update

My quarterly PSA reading and visit to the oncologist went smoothly.

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Like every man with Stage 4 metastatic prostate cancer, I approach my quarterly PSA reading with a bit of fear and intimidation. There is always the million dollar question: is my PSA holding steady or starting to rise? I am pleased to report that my PSA remains less than 0.01. I shouldn’t be too surprised. I don’t expect it to make a move, if it decides to, for at least another year.

My testosterone is kicking in and is on the lower side of normal. I have already witnessed hair popping up in places where it was dormant for the past two or more years. Oddly enough, when I put on one shirt, this week, I was surprised to realize that I didn’t care for the new-old-look of some hair showing in the V-opening of my shirt. It’s odd how things change with a bit of cancer.

So life continues, living with cancer. I have to admit, I have become more comfortable with the concept. As the television commercial says… ”I have cancer. It doesn’t have me.”

Wishing you all good health and good PSA readings.

Our Prostates Still Need Better Clarity

Just as a new study on the benefits of PSA are published, I received a sad email over PSA ignored.

 

As I read and reread the following email that I received this morning, sadness and disbelief took hold of me:

My companion/lover/confidante died from prostate cancer on July 20, 2012. In 2005, his PSA was 7. His urologist was unable to find any cancer and told him that an elevated PSA could be caused by a number of things and not to be concerned. He still had an elevated PSA at his next exam and again, a biopsy could not find cancer. Finally, in 2008, he sought another opinion from another urologist who took the PSA and his other symptoms seriously and he was diagnosed with advanced prostate cancer. It had already spread to his lymph nodes. His PSA was now over 200. Incurable. We were “lucky” to be able to fight the progression this long with hormone therapy, chemotherapy and radiation until now. But, if the PSA had been taken seriously in 2005, he would most likely be alive and thriving today. The PSA is a necessary test and can save lives… It was signed, Laurie.
This testimony arrived just on the heels of a new study published this week in the journal Cancer. It gives important counterbalance to the recent recommendation by the U.S. Preventative Services Task Force (USPSTF) against routine prostate-specific antigen (PSA) testing for prostate cancer. The results of this study found that if PSA testing were widely rolled back, three times the number of men would be diagnosed annually with advanced prostate cancer that had spread beyond the organ and is much more difficult to treat. The study showed steep declines in the prevalence of men diagnosed with metastatic prostate cancer around the time PSA testing came into widespread use in the United States in the early 1990s. Currently with widespread PSA testing, some 8,000 U.S. men are diagnosed each year with metastatic prostate cancer; the study calculated that number would be 25,000 if not for PSA testing.

Of course, we all know the downside of regular PSA testing is the risk of overtreatment. Currently there is no definitive way to determine which man diagnosed with early prostate cancer will go on to metastatic disease and which can live comfortable with his non-lethal tumor. The senior author on the study, Dr. Edward M. Messing at the University of Rochester, was quoted in HealthDay as saying that the USPSTF recommendation on PSA testing this year, “wasn’t a brilliant conclusion.”

Dr. Stuart Holden, director of the Louis Warschaw Prostate Cancer Center at Cedars-Sinai Medical Center and the medical director of the Prostate Cancer Foundation, who was not involved in the study, said, “It’s definitely true that wholesale screening using PSA leads to over detection and over treatment, but within that group of men there is a subset of patients—and not an insignificant subset, as shown by this study—that are surely benefited by PSA screening and treatment.”

Dr. Holden also said that he and many other urologists who practiced medicine in the pre-PSA era, have witnessed changes that are undeniably positive in PSA era—meaning doctors see a lot fewer men diagnosed with late-stage prostate cancer that is likely to significantly shorten their lifespans.  “It strikes me as horrifying to think someone would make a recommendation which might take us back to that era again,” he said.

In fact, Dr. Holden points out that China is now in a pre-PSA era, where much of the prostate cancer doctors see in that country has progressed to the advanced metastatic stage that is often lethal.  Ultimately the answer, both in the U.S. and around the world, will be better science that can, with good accuracy, determine at an early state of diagnosis, which prostate cancer is destined to become lethal and which is so slow-growing that treatment can be avoided.

As a patient with metatstatic disease, I am still a firm believer that the PSA test may have saved my life. I also know that many men have been overtreated. Clarity is needed for fighting this disease. For all the men who will be diagnosed in the coming years, and for men like Laurie’s partner, research for better biomarkers and risk stratification needs to continue.

The Prostate Cancer Waters are Thawing

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For once it’s not global warming–just a new generation of men emerging, and talking…

 

Last night, as I witnessed LA City Hall and the iconic LAX light towers glowing blue in support of prostate cancer awareness, I had to smile and think, what a difference a few years make… In the four and half years since I arrived at the Prostate Cancer Foundation, I am seeing a palpable thaw in public reaction to this disease and increased support for awareness. I know around the country, other cities and landmarks are also turning blue this month; media partners are donating ad space and electronic billboard space in Times square. More articles are appearing and I am now much less surprised to run across these efforts when I do.

It makes an ardent advocate like me smile.
I’ve given this shift a great deal of thought since last night and realized I shouldn’t be surprised at all… For the past decade, we’ve had some solid partners and programs chipping away at the lack of understanding and awareness about prostate cancer: more than a decade of the Home Run Challenge supported by Major League Baseball, ten years of  annual in-store campaigns supported by Safeway Stores, years of support from FOX Sports and FOX Sports Supports (view the television public service spot), Movember men growing moutstaches around the world to support research for cures, corporate support from NASDAQ… the list goes on.

Over time, these efforts have reached an important audience of baby boomers and younger young men who are active and, most importantly, vocal advocates of their health. They are more proactive in prevention and early detection, and are ready and willing to talk about issues whether they occur above or below the belt.  With the help of living in a world that is now linked 24/7 by social media, our world is finally–about time–changing. Prostate cancer is coming out of the shadows.As we mark National Prostate Cancer Awareness Month, I believe we should celebrate those organizations and new age thinkers who are making this sea change posssible.

The more we focus attention on this disease and more we talk about it, the faster we will save more lives, overtreat less, and raise the research funding to find the cures that are so much needed for so many men and theiar families.

As I often tell fellow patients–there is no better time to be a patient, if you have to be one, than today. May we all reap the benefits of increased awareness and accelerated scientifc discovery.

Mind the Gap–You Are Not Alone

I am thankful we are living in an age where men feel they can reach out to others–especially when it comes to this disease, its treatments and sometimes devastating side effects, especially depression. 

 

I know I have written about the emergence of a new male–capable of opening up and discussing once taboo topics. I have also attributed the growth of online forums and social media (as safe, non-face-to-face opportunities) for accelerating the pace at which men are opening up about so many aspects of dealing with this disease and the realities it imposes upon patients.

Unwanted side effects, fears of recurrence, doubts surrounding treatment options, emotional fatigue, occasional changed relationships with friends and family and other factors can all lead to varying depth of depression. I know… I’ve fallen into the depths, however temporarily, just a few times for a day or two in the past two years. I’ve shared the experience openly in this forum. Knowing what it is, I’ve been able to pull myself out of those depths with just a bit of effort. I attribute that ability to my team of medical experts who were continually were on the depression hunt with me, asking how I was dealing with my treatments and journey. For me, that was all I needed.

However, the more I speak to fellow patients, the more I’ve come to realize that the spectre of possible depression is too often glossed over or, worse yet, not even discussed with many of my brothers in prostate cancer. Many are left entirely unprepared for dealing with depression when it strikes. For those with little testosterone and few natural coping defenses due to hormone therapy, the stronghold of depression may even be magnified. For some, dealing with the resultant depression seems insurmountable. Proof in point? A very disturbing letter I received from a fellow patient yesterday. For reasons of privacy, I will call him Rick.

Rick is a single father in his early 40s. He lives somewhere in the U.S. and was diagnosed with prostate cancer a few years ago. His treatment called for a radical prostatectomy. But for Rick, the biggest problem is not the cancer. It’s the overpowering depression. As I began reading his four-page letter I was chilled and choked back a few tears. Even breathing became difficult. Rick’s opening paragraph read:

“I am writing this letter basically to anyone who might listen. Praying that the right person reads it and mostly because I don’t know what else to do. It quite literally is a matter of life and death. If my life continues the same way, I honestly can not fathom enduring much more before I take my own life. That is the only solution I can come up with that will ‘quiet’ my mind. I feel as if I am in a hole or a prison, that no matter how hard I try, I can not get out of…”

I need not share any more details of the letter. But, as I read on, it became very clear that Rick is a good man in a desperate situation. He is a self proclaimed non-digital native so he hasn’t been able to vent or get support from the online forums that allow a man some anonymity. He finally reached out to a few organizations the best he could–by letter. This was no letter for filing.

Immediately, I started researching suicide prevention and prostate cancer patient support services in his part of the country. I tried calling Rick several times only to get a recorded message. To my relief, I finally reached him during my drive home. He appreciated my call. My first words were… You’re not alone… there are hundreds, perhaps thousands of men in the same boat as a result of diagnosis and treatment.  I also told him that I am neither a medical or mental health professional, but that I could relate and listen to him from a patient’s perspective. I told him that I had compiled a list of resources for him and that he would need to reach out to one of them.

As I was talking with Rick, I thought, God…how many folks battling cancer or other life-threatening diseases are standing in the same situation as him? Feeling the same helplessness…?

Our connections were bad, but Rick promised to call me back this afternoon to talk further and to get my resource list. He did. I made sure he has my cell number and told him to call me anytime. I emailed my list of help organizations that can offer Rick the support he needs. I believe they can. Above all, I am grateful he reached out as he did. I thanked him for verbalizing his situation to me and told him the more more he talked to anyone about his situation, the better equipped he will be to start on the road to feeling better.

My point in all of this is that patients are treated often physically with less attention paid to their mental state and welfare. This results is a tremendous abyss into which I am afraid too many can fall. Both patients and medical professionals we need to do more to Mind the Gap. As men we need to continue talking and sharing the support we need.

I barely know you, Rick, but you have my prayers and deep concern. I wish you find the help and comfort you are seeking and hope to hear from you many years from now. Above all, I wish you the peace you are seeking.