Prostate cancer treatment options

The sheer volume of scientific data and marketing copy aside, the best allies remain information and personal preference. 

I read an article today about a new study out of NYU Langone Medical Center and Yale School of Medicine that shows that when hospitals acquire surgical robotic technology, men in that region are more likely to have prostate cancer surgery.

“The use of the surgical robot to treat prostate cancer is an instructive example of an expensive medical technology becoming rapidly adopted without clear proof of its benefit,” said Danil V. Makarov, MD, MHS, lead author and assistant professor, Department of Urology at NYU Langone Medical Center and assistant professor of Health Policy at NYU Wagner School of Public Health. “Policymakers must carefully consider what the added-value is of costly new medical devices, because, once approved, they will most certainly be used.”

I can think of other modalities and techniques about which the same can be said: proton beam therapy vs. intensity modulated radiation therapy, CT vs. MRI vs. other imaging technologies. The fact is, whenever new technologies are introduced, they come with large entry costs, sometimes widely conflicting data and an abundance of marketing messages from eager manufacturers and medical centers who hope to differentiate themselves in highly competitive markets. I remember twenty some odd years ago, smaller medical centers often shared the services of mobile CT and MRI equipment so they could also market the latest technologies and keep patients from defecting to larger, competing institutions. It’s what patients demand.  It’s what a free market encourages.

My first thought in reading the article was that it was a matter of reallocation… patients were simply electing to go to elsewhere for the new technology. But then I read: “…hospitals with surgical robots increased surgery cases an average of 29.1 per year while those without robots experienced a decline in radical prostatectomy by – 4.8 cases.” That’s still a net gainof 24.3…

Now, in this day and age where overtreatment of certain prostate cancers is a real concern, I can’t image any well-regarded institution or practice up selling patients to procedures that aren’t necessary. What I find plausible is that with a surgical option that is less invasive and offers some appealing benefits such as not needing to bank blood, shorter hospital stays and smaller incisions, more patients may be willing to entertain the thought of being more aggressive with their treatment selections. This is the area that deserves more consideration:how do you tell a patient who would prefer to have the cancer taken out, perceives an attractive option and no longer wants to consider less invasive and less aggressive options, that they can’t? At this point, they may be less willing to look at the diagnostics numbers more closely and objectively. And, until a physician can definitively tell a patient that his cancer is not a life-threatening variety, what are they to do? There is the ever prevalent threat of malpractice lawsuits.

I have always said that I was dubiously lucky enough to have clear diagnostics data (Gleason scores, percentages of involvement within the prostate, PSA doubling time, etc…) that pointed to aggressive treatment. In my casem surgery. As a result of my research, I was confident that outcomes with open or roboticsurgery are about the same and are more dependent on the surgeon’s experience (number of procedures) with a specific technique. Age can also have more of an effect on outcomes than the difference between open and robotic. Following a long consult with my surgeon and a query into the number of robotic  procedures he had performed, along with his outcome percentages for urinary continence and ED, I made my decision to have him perform the procedure robotically. Had he only done open surgery with the same stats, I might have elected for that option based on my confidence levels. Perhaps not. (I’ll admit, I am a bit of a weenie when it comes to incisions.) The most important factor was that I was comfortable with my final decision and went into surgery without reservations.

If a patient is to be comfortable with their treatment choice, aggressive or not, I believe personal preference has to play into the decision process. We are all so very different… I know one patient who chose to have open surgery with only an epidural block.  I admire the man, but I certainly couldn’t have done it!

What’s the point of all of this? No matter what the technology, there will always be a plethora of data and confusing–sometimes conflicting–opinions around it until its effectiveness and benefits play out over time, and, until the next great innovation comes along.

Keeping this reality in mind, there is no substitute for us being our own best patient advocates. To this end, our strongest allies remain information harvesting, the advice of  a trusted medical professional  and a good dose of our personal preferences guiding our final decisions.

 

Is It a Detour or Just a Winding Road?

My journey without a map yields more tests and more appointments.

As a result of today’s appointment, I am now scheduled for an echocardiogram on Tuesday and a nuclear stress test on Friday. Standard stress tests would not be able to detect if there is any base reason for my irregular EKG result.

The cardiologist, fully familiar with the side effects of Lupron, believes at this point that my palpitations and chest pains are just that–side effects that are not to be of a major concern. In this case, they would be called benign. Yet, he wants to rule out any other underlying factor.  Of course, I sat there thinking to myself… NOT A MAJOR CONCERN? You try living with the entire USC marching band AND the football team running through your chest several times a day…!  

Of course, there is reassurance to be found in his preliminary assessment. Perhaps this news alone will help control the sensations I am experiencing. It echoed what one of my most trusted associates at work had hypothesized earlier this week. If there are no underlying reasons (a plus), I might just have to live this way until I end my dance with Lupron (a BIG minus in my book). When I pressed the cardiologist for alternatives, he offered that treatment with beta blockers night help–I suppose that would be better than changing my Lupron treatment and hoping an alternate works as well at this point.

Today’s visit was able to provide some peace of mind. As I left the appointment I found myself wondering if this should be considered a frustrating detour or merely another twist on a winding road. Either way, I suppose I can’t complain. I started this journey knowing there is no road map to go with it.

Have a good weekend.

 

A Perfect Storm: PSA Screening is Imperfect But Not Failed

The morning after the final USPSTF recommendation against widespread PSA screening leaves me believing that many have missed their mark and their efforts could have been better directed.

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The debate over PSA screening began to simmer and quickly rose to a boiling point about three years ago. Opponents pointed to the problem of overtreatment (according to scholars at Johns Hopkins, overtreatment costs more than $1 billion annually in the U.S.). Proponents looked to the reduced number of prostate deaths as a mark in favor of screening. Studies from both sides of the Atlantic were both complex and provided differing data, making them easy fodder for campaign positions. In short, all the makings of a perfect storm for the debate were in place.

What was missing in the equation was general acceptance that there is a middle ground. One can find it by acknowledging that while PSA screening is imperfect, it is not a failed test. While it is not cancer-specific, it is not a failed test.

In my completely personal opinion, all parties in the debate, including the United States Preventive Services Task Force, would have been better served by launching a nationwide men’s health campaign for patients and clinicians, outlining the pros and cons of both screening and of various treatment options so patients could make informed decisionsregarding their personal healthcare. This should have been coupled with an urgent call for research funding that is making rapid progress for better, prostate cancer-specific biomarkers. Just one example, out of the University of Michigan, is a simple urine test (looking TMPRSS2:ERG gene fusion and PCA3 DNA that are expressed at high levels in 95 percent of prostate cancers) that has the potential to eliminate thousands of unnecessary biopsies and more accurately direct those who can benefit from proactive surveillance rather than aggressive treatment.

But guess what? Even with this urine test, PSA screening would still have an important preliminary role in an informed diagnostic and treatment decision process…

One fellow patient aptly captured what I believe is the feeling of many patients when he posted the following on the Men’s Prostate Cancer Support Group page of Facebook (an invitation-only private forum for men dealing with prostate cancer and treatment):  ”Enough of the nanny state. We are big boys. Give us our PSA and we can decide if we want a biopsy or further treatment knowing the risks involved. But let us decide and give us the only tool we currently have.”

Lancet Oncology, the prestigious medical journal, reports that 84 percent of women in the United States are alive at least five years after receiving a diagnosis of breast cancer. Only 70 percent of British women survive that long. Further, 92 percent of American men with prostate cancer survive for at least five years, compared to 51 percent of Britons. In Britain, PSA screening is less utilized and prostate cancer is often diagnosed in more advanced stages.

The good news that needs to be reiterated is that the Department of Health and Human Services has already stated that Medicare will continue to reimburse for PSA screening. Private insurers, some reinforced by State mandates, should also continue reimbursing for this simple blood test.

Already, many groups are rallying to reach out to their Congressional representatives, asking them to have the USPSTF recommendation reversed. How much more time and effort will that take? How much more confusion will be generated?

From the standpoint of one who believes that his advanced disease was caught in time by the PSA, I also understand and sympathize with those many men who might have been overtreated in their rush to rid themselves of what might have been a non-life-threatening variety of this disease. Thus, any further discussion on reversing the final decision of the USPSTF is futile unless it calls for a clear and concise education campaign on what the PSA is and isn’t capable of doing, the pros and cons of treatments AND and urgent call for funding new biomarkers as fast as our researchers can validate and commercialize them.

Only with better biomarkers can we put this issue to rest. Only then can we overtreat less and cure more.

Imerman Angels to the Rescue

Faced with a diagnosis of testicular cancer, one 26 year-old man initiates Imerman Angels to match newly diagnosed patients with cancer mentors.

We all know the confusion and isolation that a cancer diagnosis brings. There is so much information to absorb and so much to gather. The road ahead is covered in a shroud of fog and often, those around us, save for our caretakers, are often helpless to assist us in the way we need it most. Tomorrow I will be participating on a patient panel hosted by MOVEMBER. On it with me will be a remarkable patient who had a simple yet brilliant idea…

Jonny Imerman was diagnosed with testicular cancer at 26, during his treatment he had the support of friends and family through his journey but never met anyone his age who was a cancer survivor. He wanted to talk to someone just like him, someone who truly understood and remembered – someone who had already beaten the same type of cancer. Based on this experience Jonny founded Imerman Angels. His organization carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel).

Most of us will agree that having someone who has “blazed the cancer road” ahead of us is invaluable. They have insights and suggestions that newly diagnosed patients haven’t even been able to consider. Perhaps most importantly, having a dialog with some who reminds us that we are not alone and understands exactly how we are feeling is an important assist through our journey.

Summer’s Rushing By While Some Things Stand Wonderfully Still

It’s been a whirlwind few weeks, with Home Run Challenge, Father’s Day and the 4th of July Holiday.

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The warmth of the summer sun, a chilled glass of ice tea on the terrace and an undetectable PSA–yes, its a good summer!

I know I’ve been quiet lately–partially catching my breath after an exhilarating Home Run Challenge that has raised more than $1 million (and counting) to support much needed research to protect our fathers and sons, and placing the prostate cancer issue in front of millions of baseball fans and television viewers. I’ve also allowed myself some “me time” –letting cancer play its new secondary role in my life.

But I have to break my silence to let you know that my latest PSA result came back undetectable. While I no longer panic waiting for results, the news was every bit the same to me as a national holiday. In fact, it was my very own Independence Day, confirming at least a continued temporary, if not sustained independence from this disease.

Yes, I feel so good with Lupron behind me. My transition off treatment wasn’t an easy one. The surge of returning hormones was a reverse assault. It charged my emotions and played with my abilities almost more compared to being in the depths of treatment. Few can understand or even sympathize with what that process was like. Looking back, I believe more studies may be warranted to understand the tremendous impact coming off treatment and a storm front of surging testosterone can have on a guy. It can change a person forever. It was my own hurricane Sandy.

But that is past. And I am alive and writing this entry sitting in the warmth of the glorious summer sun.

As I take all of this in, I still have to wonder, how many men will be faced with a diagnosis today… how many will learn that their PSAs are rising… how many will begin to feel the pain in their bones, confirming their fears that their disease is indeed progressing. For them I continue to pray. For them we need to continue our assault on this disease. For them, I will continue to write whatever I can to provide some comfort and hope. It’s the least we can do.

Yes, life is unpredictable, but it’s still beautiful.  Bless you all.

Hitting ‘Em Out of the Park Against Prostate Cancer

Baseball isn’t always all about peanuts and Cracker Jacks. Sometimes it’s about saving lives.

Mets-300x214The 18th Annual Home Run Challenge (HRC) is upon us this week. The program, run by the Prostate Cancer Foundation with Major League Baseball has, in the past 17 years, done much to change how patients diagnosed with prostate cancer today are treated. In fact, with the help of $40 million raised by the HRC, six new drugs have been approved for patients in the past three years and new genetics-based tests are enabling physicians to better direct patients to the level of treatment that is optimal based on the potential aggressiveness of their disease. In short, America’s favorite pastime is raising awareness by encouraging discussions between fathers and their families leading up to Father’s Day, reducing the death rate and moving us toward a reality where we cure more and overtreat less.

By any of these measures, the program is delivering on the promise of its slogan: Keep Dad in the Game.

What’s more, it’s fun. Now through Father’s Day, baseball fans and supporters of the cause can go to the Home Run Challenge website and pledge any amount from $0.10 upward for each home run scored in all 84 MLB games played from Tuesday, June 11 through Sunday, June 16. Last year, 150 home runs were hit, raising a total of $2.2 million for research. That’s no small peanuts for a game so many Americans grew up playing.

This Father’s Day, if you are stuck deciding between yet another new tie or pair of socks to give to dad, consider telling him how much you love and care about him in a different way. Make a pledge in his honor and let him know. Then talk to him about your family history, screening and early detection and treatment. Investing in the gift of life for dad and millions of other men will take us farther than any pair of socks ever could.

Wishing you all a Happy Father’s Day filled with warm and tender memorie

There… I Said It!

It’s funny how a simple Facebook post got me to finally say “survivor” after all this time.

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A few weeks ago, I published an entry talking about how I believed I was finally nearing a point where I would be comfortable applying the term survivor to myself. When and how a patient chooses to use the term remains a highly personal issue. I knew I was getting close, but I surprised myself this past Saturday when I posted an update to Facebook as part of my travels with PCF’s Home Run Challenge.  It included a photo of Joe Torre and me. I wrote:

The 18th Annual Home Run Challenge to Keep Dad in the Game begins. I am honored to know and have opportunities to work with Joe Torre… Baseball great…, terrific guy…, supporter of the cause… and, above all…fellow survivor.

It wasn’t until about an hour later, as I was watching the Phillies game, that I realized what I had done. I went back to that Facebook post and stared at it for a while. I felt a tremendous weight lift from my shoulders as a smile spread across my face. Survivor… I had said it and it was as natural as using my name. My cancer’s sound barrier was broken.

Yes, I still have numerous quarterly blood draws and visits to the oncologist ahead of me. And, it’s a full two years until I reach the magical five year milestone. But, for the first time ever, I actually see it and believe it will happen. It feels great!

As I look back on the past three years, I realize I’ve learned several important lessons. Life doesn’t always go as we imagine it would. But we need to go with its flow, acknowledge our blessings and balance them with the challenges we are given. I’ve learned to accept the love and support of others without restriction and to give it without expectation. And, I’ve learned to embrace life as easily as I was ready to accept death.

Life is a river and we are leaves on its currents.

I remain ever grateful to my dear MaryEllen, my sons, family and friends who helped me weather the storm. Thank you for wanting me to be alive and with you. Yes, I heeded the call to believe and you have another survivor among you.

 

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.