A Year Has Passed

It's been a year since I started treatment, which began with Androgen Deprivation Therapy and then was followed with 28 rounds of external beam radiation, 54 Palladium 103 Seeds and 10 more radiation treatments. Then we wait . . . to see whether the PCa was local and has been eradicated or whether some of the cells snuck outside the Prostate and are travelling to other parts of the body. At this point, the PSA test is the best indicator of what's happening (I had the Prostascint scan earlier - but it's not all that accurate and could travel to The Netherlands for a Combidex scan, but all of the Doc's tell me that there's nothing to be gained at this point from the Combidex scan).

Each PSA test then has the potential to be a dramatic event. But I'll be trying hard not to let that happen.

On February 18th I visited with Dr. Myers in Charlottesville. He reviewed all of my tests over the past six months - including the two most recent PSA tests (<0.01 since November). His words whizzed past my head like a stray bullet in North Philadelphia . . . "there's a better than 90% chance that the cancer won't return". Two hours later, sitting in the Charlottesville airport, the magnitude of his comment hit me.

The Bottoms Up Chronicles

I was going to post a series of emails between my Prostate Pal Lee and myself - but realized that they were just a tad graphic (an understatement) and the levity (an overstatement) didn't quite justify the gory details. So if you're someone with PCa and you're thinking about seeding, drop me an email (saildog@aol.com) and I'll send you the detailed version. Otherwise - if you're reading this, figure that you're blessed to be spared.

If you doubt that - here's Lee's response to one of my emails:

In a message dated 8/7/2008 11:54:07 A.M. Eastern Daylight Time, Lee writes:
OK…my “little guy” just shriveled up, my sphincter just puckered up and Christmas morning will never be the same for me! OUCH!! I want my mommy!! Can’t wait for the next Installment!! Is Carol cracking up at all of this??

The Adventure That Is Prostate Cancer

If you're diagnosed with Prostate Cancer you will quickly learn a few things:

• There's no single course of treatment that works best for everyone. So you'll have to figure out what you're going to do - and you'll largely have to do it on your own. Your options will include watchful waiting (a pleasant term meaning that you'll just keep you eye on your PSA), surgery, various forms of radiation, seeds or brachytherapy, a combination of radiation and seeds, Androgen deprivation therapy (ADT or hormone therapy), hifu, cryotherapy and several others.


• Doctors are like used care salesmen - in the sense that they will sell you what they have or what they know. Not everyone mind you, but enough that you can generalize the following: urologists will sell you surgery, radiologists will sell you radiation, and so forth. The challenge is the fact that your cancer has been diagnosed by a urologist and so they'll first put surgery in your mind.


• You have time to make a good decision - don't rush into one. An interesting aspect of Prostate Cancer is that it is slow to grow, at least initially. The good news is that most Doc's will tell you that you have somewhere close to three months to make a decision and initiate treatment (presuming that you're going to do something other than watchful waiting). There's a lot to learn, however, so you'll need to get on your horse. I've heard stories of Doc's pushing patients to make a decision quickly though thankfully I did not experience this in my learning journey.

• There are some good resources available The internet clearly has changed things for us guys diagnosed with Prostate Cancer - providing ready access to diverse and numerous sources of information. My advice - stick to the mainstream prostate cancer websites and avoid message boards, at least initially. Why - the websites generally provide solid, sound information that has been screened by someone with at least the hint of a medical background. Messages boards are screened by no one and the information may only have relevance to the individual making the post. And it may be dead wrong. We may be screened for PSA and Gleason score - but us prostate cancer patients are not screened for IQ. I found http://www.pcri.org/ to be particularly helpful and their helpline staff person Jan Manarite to be a Godsend.

My journey:

December - diagnosed on December 19th, Dr. F suggested that I pick up Patrick Walsh's book "Surviving Prostate Cancer". It was a good recommendation. Not the easiest read, but of the books on Prostate Cancer that I've read it was the most encyclopedic - and that is its value. We began to make some appointments for the so-called second opinions. Kind of a misnomer in the sense that there's only going to be one opinion (generally) as to whether you have prostate cancer. So what you're really doing is getting perspectives or information treatment options.

I also started a daily 'to do' list - to help me make progress in scheduling tests, doctors, gather information and stay focused. It worked. I also included three items or guiding principles on each days 'to do' list:

• We’re not looking back
  We’re not victims
  We’re not alone

I also included the following

• We will survive this!

And lastly, I developed an equation of sorts:

• Think healthy + eat healthy + run healthy = be healthy

All were important at various times.

January

Had a very helpful conversation with Dr. Michael Manyak, formerly of George Washington University Hospital and now with Cytogen (Prostascint Scans). Dr. Manyak was that invaluable, objective physician expert. In addition to recommending several physicians to see - he laid out the options with more clarity than can be gained by a book or website. I met with Dr. Julio Pow-Sang at Moffitt Cancer Center, who is the exception to the rule that doctors are like used care salesman. Dr. Pow-Sang offered several options along with a descriptions of advantages and disadvantages. I also had a good meeting with a series of Docs at Jefferson University. It was touted as a 'multi-modality' session which made me hope for something that never appeared. I did, in fact, spend time with a radiologist, surgeon, nutritionist and social worker (along with a few residents, interns and others thrown in) but there was never an opportunity to have the different disciplines (particularly the surgeon and radiologist) debate or even discuss what would be the best approach given my particular 'biology'. By the way - that term, Biology, deserves its own post . . . . and maybe will get one. As a result, the session was helpful but not at the level I hoped it would be.

Toward the end of the month, things heated up with visits to the renowned Dr. Patrick Walsh and Dr. Charles 'Snuffy' Myers. I'll have a separate post on my visit with Dr. Walsh. Dr. Myers - while clearly opinionated about the various characters (and I mean that positively) in the prostate cancer field, provided clarity an direction in part as a result of his expertise and in part because he has been through this prostate cancer thing himself (visit http://www.prostateforum/ for information about Dr. Myers and the American Institute of Diseases of the Prostate).

Up to this point I was thinking primarily about surgery with the understanding that I would likely need radiation as an adjuvant therapy. Perhaps I held out hope that only surgery would be necessary - and not the radiation, but Dr. Myers provided some clear interpretation of the Han and Partin Tables that began to make it clear that radiation would likely be the better approach. While all of this was circulating through my head we decided to put a hold on a surgery date with Dr. Walsh.

I should add that our friend Silvana gave me a kick start to healthy eating. I had already learned that Michael Milken had eliminated red meat and dairy from his diet in order to hold his prostate cancer at bay (and it continues to work for him). Silvana's book on cancer and diet gave us a focus on supplements, foods, etc. All were critical considerations - and beginning in January I dramatically changed my diet and began a series of supplements.

February

Early in the month decided that I would pursue a course of Androgen Deprivation Therapy (through a Combined Androgen Blockade) together with radiation/seeding treatment at the Dattoli Cancer Center. I could go on about the various reasons for choosing this course (and may at some time blog more about it) but in some ways the choice was made at a much higher level. Let me try to explain. During a conversation with Julio Pow-Sang at Moffitt, he suggested that I may be a better candidate for radiation (rather than surgery). Moffitt offers various forms of radiation therapy - so it was not as if Dr. Pow-Sang was turning me away. However, once he mentioned radiation, I had a somewhat involuntary reaction . . . which was to tell him that 'all roads are leading me to Dr. Dattoli'. Not sure why I said it (though it was true) and it wasn't the most polite thing to say when another physician is explaining his organization's radiation options - but as I said, it was involuntary. This has happened to me only a very few times in my life. The first time was nearly 30 years ago when I met my (to be) wife on an evening when I was supposed to have dinner with another woman (well, girl, actually). As I began to explain to Gretchen (the other woman, so to speak) why I was choosing to go with Carol that evening, the words "this is an investment in my future" came out. I had no reason to know that or to say it - but there it was. Same thing with 'all roads are leading me to Dr. Dattoli'. It was true - they were (from Dr. Manyak to Dr. Myers, to his book that I had ordered on line) but I had not, at this point reasoned through the process of determining that (a) I would seek radiation as part of my treatment or (b) that I would use Dr. Dattoli.

The process of getting an appointment was a bit odd. You're placed on a list that will be called by either Dr Dattoli or Dr Sorace after 5 PM during specific days. You're not told exactly when that call may come in - but if you miss it, they will go on to the next person. (Ah, perhaps the sense of urgency that is critical to the sales process was being created. This would tie to my theory of used car dealers and Dr's). But anyway, the call came while I was interviewing two residents of a retirement community. I execused myself for what I thought would be a ten minute call - but it turned into at least 30. To be frank, I thought Dr. Sorace was helpful - but a bit too rote with his 'presentation'. Nevertheless I decided to take the next steps of qualifying my insurance plan, scheduling an appointment, etc.

Androgen Deprivation Therapy began on February 14th - with a Lupron shot received on February 26th (by Dr. Fitzpatrick). Told Dr. Fitzpatrick that I was planning to run a marathon in a week and he quickly pointed out that training for a marathon while undergoing ADT and radiation was stupid. I didn't have time to tell Dr. F that the training was almost over, that I had already run 26.2 miles on Sanibel island and the marathon was the following week. Just didn't seem an important part of the conversation - what with my pants down, bent over, with a horse needle headed toward my ass.

March

Ran the Sarasota Marathon (as described in another post) with my sister-in-law (who kindly ran a lot slower so that we could finish together) on March 2nd. Never really thought I would run a marathon and definitely didn't think I would be doing it after a diagnosis of Cancer. Also took care of some additional tests during the month - the ProstaScint scan being the key test. Bowel prep is similar to the colonoscopy (oh what fun) and it involves laying perfectly still within an MRI type machine for over an hour. Its easy to lay perfectly still for nearly two hours - all you need is the threat that if you move, the clock will start all over again.

The ProstaScint Scan provided good news - no sign of metastatic prostate cancer. Unfortunately I've learned that the reliability of the ProstaScint Scan is questionable. So I'll take the reading and be happy about it - but I'll be very wary of it representing reality.

April

First visit to Dattoli Cancer Center. I'll see Dr. Sorace (though I'm secretly wondering why I'm seeing Dr. S rather than Dr. Dattoli). And I haven't felt too good about my telephone conversation with Dr. Sorace - but I have to confess that I grew to appreciate Dr S very quickly, once we met in person. It could have been a number of things that provided me with the assurance that Dr S was the right Doc for me to be seeing. But I mostly attribute it to the color doppler ultrasound that he tele-illustrated just like John Madden. Thorough, thoughtful, direct are the three words that come to mind.

By the way, the color doppler ultrasound shows less cancer than the biopsy seemed to suggest - but I realize that some of this may be due to the effects of the ADT. I accept the results, however as another indication that the message I received shortly before I had the biopsy. . . . 'things will get worse before they get better'. The 'worse' part was represented by biopsy results, the incorrect clinical staging, and some other items that happened during mid to late December. But now (January through March and later) I was beginning to feel the 'better' phase. The news from various test results was mostly good (save for the endo-rectal MRI which suggested that the cancer may be in my seminal vesicals.

May

With my blood tests indicating that the ADT was working (reducing my PSA dramatically and my testosterone also dramatically) I was cleared to begin my first course of radiation therapy - IMRT (Intensity Modultated Radiation Therapy). The radiation consisted of 28 sessions - five days a week for nearly six weeks. Other than being caught in the same black hole as Bill Murray in Ground Hog Day - IMRT was a piece of cake.

The above is not entirely true, but true enough to post. The one aspect that wasn't so peachy was partially my own fault. Prior to the radiation beginning the Doc's set up something called a 'simulation'. Sounds easy enough - but it turns out its not really a simulation at all. Its the pre-tests that are needed to direct the radiation beams. You get catheterized for a short time so that some dye or contrast can be inserted through your urethra. I guess it provides some mapping assistance so that the radiation beams can avoid the urethra. Doc S told me that I should drink plenty of fluids after the catheter was removed and that if it burned a bit when I peed - then I should drink more fluids. Sounded like good advice - but not quite as specific as I needed. Once I finished the so-called simulation (a word that now ranks with 'the check is in the mail') I headed to the Tampa airport to fly north in order to do a Board Retreat the next day. First fluid that came to mind was a very tall beer- so I ordered one with dinner while I waited for my flight. Thinking of the advice Dr S provided, I ordered a second one figuring the more fluids the better.

So far, so good. But about 1 AM I woke up and had to pee (I could write urinate here - but frankly one thing that happens when you get Prostate Cancer is that you get a pass on saying such things as pee). And oh my god - did it burn and hurt and burn. Did I say how it burned? And bled.

But in about 12 hours it resolved and I realized later that the use of the term 'fluids' in the prostate cancer world means water. They could say 'water', but fluids has a nicer ring to it.

And on Memorial Day weekend I ran a 5-k. Didn't run it fast, mind you, but I ran it. And that's what counted.

June

Radiation runs through June 20th - and after that I'm released to head back to New Jersey and Pennsylvania. Damn it felt good to be headed 'home' though we were really fortunate to have Danny and Eileen give us their townhome in Venice for the six weeks I was receiving radiation. Carol made the trip back and forth from Long Beach Island to Florida three times during the six weeks - even with a store to run.

On the plane back to Philadelphia - I don't drink any beer (just in case you were wondering).

July

I'm still on the ADT - energy level is decent and the PSA and Testosterone level continue to be way low. I get my second lupron shot from Dr. Fitzpatrick. He asks about the marathon - and gives me a high five. Kind of cool - particularly when he tells me that I'm going to be okay. I put it in the same category as 10 commandments on a tablet.

August

SEEDS! I'll put this in a separate post - but August 6th I received my seed implant and all went well. Spent the night in the hospital with Carol. The nurse told me that she would be in around 3 AM to remove the catheter - and about 1:30 Am I was wide awake, looking at the clock, anticipating that the damn catheter would soon be removed. Carol was awake too - and I explained that I felt like I did when I was a kid on Christmas eve. She said she would never think of Christmas the same way again.

I promised my prostate pal Lee that I would keep track of the details of the seeding - from start to finish. He used the title 'Bottoms Up' when emailing me prior to the seeding and I integrated that into the title for the post and my emails to him: "The Bottoms Up Chronicles"

November

So now it is the first of November and this coming week I'll fly back to Sarasota to complete the last course of radiation - 10 treatments targeting the areas around the prostate (to ensure that any cancer that left the prostate but remained in the area is zapped). I feel good that this will wrap up the radiation sequence - but a little nervous that it also represents the end of that treatment. And soon (though I'm not sure how soon) I'll know whether it worked. And that makes me nervous.

God Doesn't Leave Voicemail When He's Leaving a Wake-Up Call

How many times do we say during our lives: “well that was a wake up call”. I haven’t tried to count the times, but I suspect that over my 54 years I have used the expression somewhere between 5 and 10 times, mostly with regard to business issues and perhaps some personal issues. But this is different.

First, I know myself. If someone had said to me: “Scott you have prostate cancer and you’ll be okay after some treatments” I’d figure out a way to fit everything into my current life and schedule and then get on with things. But that’s not what happened here.

First, when I finally connected with the urologist by telephone on December 18th – and he told me ‘you have a lot of cancer’, he also said “I think you are going to survive this”. I have held onto that sentence for two reasons: one – he told me that he thought I was going to survive. And two, he told me that he thought I was going to survive. In other words, its still a bit iffy. So he has my attention.

Then Carol and I go to his office the next day to have a more thoughtful conversation about the diagnosis, treatment options, etc. In the course of that discussion, he spins around in his chair to use his computer. Logged onto the Sloane Kettering website (which I have subsequently visited numerous, numerous times) he begins to type information into the nomogram. For those of you not familiar with prostate cancer nomograms – its your roll of the dice. It’s a table, developed by Sloane Kettering that tells you the probability of being cancer free after various forms of treatment, 3 5 and 7 years into the future (and conversely it tells you the likelihood of not being cancer-free and all of the implications of that).

The urologist types in my clinical stage as T-3b. I may write more about clinical staging at some later point, but for now, understand that the higher the number, the worse the cancer. And the staging, clinically, only extends from 1 to 3. Hello.

He reads the results of the nomogram, turns back around to face Carol and I and says “this isn’t always right. Its based on averages – and hey, you’re in good shape and physically fit, so you’ll probably do better than this is showing” (or something similar). We stagger out of the office with Dr. F’s suggestion that we pick up Dr. Patrick Walsh’s book “Surviving Prostate Cancer” and begin our drive to Sanibel (from Pennsylvania).

18 or 19 hours of driving provides an opportunity for a lot of thinking. And I thought about the nomogram results most of the way to Florida. I also thought about recent death of Dan Fogelberg which I had read about several days before my diagnosis. Dan Fogelberg was diagnosed with prostate cancer at age 53 and in December (of 2007) he died – at age 56. As I write this, I am once more taken by the synchronicity.

By synchronicity I mean the convergence of several events at one time. (1) cancer diagnosis; (2) overstaging of my cancer in the nomogram and the resulting poor prognosis; and (3) the rapid death of Dan Fogelberg following a diagnosis of the same disease just three years ago.

Holy shit, Sherlock. I later began to understand things more clearly. First, my PSA (15.3) was likely elevated because of the DRE the previous week. How much it was elevated is still unknown to me. Second, my clinical staging was T2-b (and possibly T-2a depending on who was conducting the DRE). Third, Dan Fogelberg was diagnosed with advanced prostate cancer at the age of 53 – and the good news for me was that most indications were that my cancer was not advanced or if it was, it was only locally advanced.

In January, I finally understood why. I needed a wake up call that would get my attention. Otherwise, I was going to ignore it. I wasn’t going to ignore prostate cancer, mind you, just the wake-up call. Clearly God knows me better than I know me, and when he decided to get my attention, he pulled out a few stops. At the risk of making up a conversation, I imagine things might have gone this way: ‘I’m going to give this guy Scott a wake-up call’. I hope he pays attention to this because lots of time guys, in particular, don’t realize what a gift I’m giving to them."

Thanks God - I got the message!

Yesterday My Life Ended

I finished a marathon yesterday, the Sarasota Marathon to be exact. The 26.2 mile endurance test was not my life’s goal, but eventually did become a defining moment in my life. The ability to set a physical goal and to achieve it is a remarkable aspect of human life that I have taken for granted. When I started running eight years ago, I first focused on being able to run a mile without walking and then on 1 ½ miles, 2 and so forth. When I first decided to enter a race – I signed up for a distance I had never run before (5 miles) and then went out, built up from 3 to 4 and then to 5 miles – ran and finished the race. Once I knew I could finish a 5 mile race without passing out, puking or otherwise embarrassing myself, I ran more of them – with the goal of running each one faster. And that’s the way each one ended. The Harvey Cedars Dog Day race in 2005 was nearly 10 minutes a mile. Dog Day run in 2006 was 9 minutes a mile. In 2007, the Scott Coffee 8k was just under 9 minutes and the Dog Day Race was just over 8 minutes a mile. Hmmm, I would think, push a bit harder, train a bit more and perhaps all things are possible . . . or at least all ‘rational’ things (running a 6 minute mile at age 53 is not considered rational).

Since I wasn’t able to run the Long Beach Island 18 mile Race this year (thanks to a bruised tailbone) I somehow concluded that I’d make up for it by running a marathon. Set my sight on the March 2nd Sarasota Marathon and then went about getting ready. Researched on-line coaches, hired Jeff Galloway (a good decision), bought a new pair of running shoes and got about the business of preparing for a Marathon 3 months hence.

Carol ‘required’ that I have a physical to make sure that I wasn’t going to keel over either while training or worse yet, during the race itself. And that – has saved my life or perhaps more accurately, has begun to define a new life.

The short version is this. On November 28th I was seen by our internist/family practitioner who did the usual thumping of chest, checking of ears, etc. And then she did the Digital Rectal Exam (which will likely be referred to as the DRE – from here on out). Said that she felt a ‘hardness’ and in the course of writing out lab orders and a recommendation for the long overdue colonoscopy, suggested strongly that I follow-up with a urologist.

Saw the urologist on December 4th, had my first PSA results back on December __ (PSA registered as a 15.3) and had a biopsy conducted on December 12th. Results . . . . 10 of 12 cores were positive for prostate cancer, a Gleason 7 (4+3). As the urologist said it “you have a lot of cancer”.

So after only 3 or 4 weeks of training, the marathon was now history. For the next month, we dedicated ourselves to researching the disease, determining my ‘biology’, understanding treatment options and finding a treating doctor. But on January 9th, Dr. Julio Pow-Sang told me that it was his ‘strong medical advice’ that I run the Sarasota Marathon. As if for effect, or maybe it was the tilt of my head that now resembled the RCA dog – he repeated his statement. But he didn’t elaborate and I didn’t question his advice. I did mutter something about continuing to run, even if I didn’t run a marathon. And later, I speculated that perhaps he was humoring me . . . “let the guy get wrapped up in a marathon and he’ll forget about this little prostate cancer thing. It’ll be good for him”.

Thought about it for about a week, wrote to my on-line coach and then decided to get back on the training regimen, though at this point I had lost at least four weeks. My sister-in-law, Nancy, had agreed to run the marathon with me - and had been subject to the on and off again roller coaster of we're running, no we're not, yes - let's do it . . . .

Which brings me to March 2nd, 2008 – the day my life ended. I had read a column by John Bingham in Runner’s World talking about his medical issues and the fact that his new perspective is to begin again to establish new personal bests. In other words, Bingham was suggesting that when a runner gets to a certain age or certain condition in life, running faster and/or perhaps running longer becomes a thing of the past - so focus on the present or the future by starting new. When I originally read his column, I thought – yep, makes sense and some day I’ll be there. After a diagnosis of cancer and the beginning of Androgen Deprivation Therapy – I was clearly there. And the marathon was a fit ending to my running life – to begin anew in some form, yet to be determined. But to stop there would be a mistake. I had already figured out that the diagnosis was a clear wake up call (I know this sounds like a statement of the obvious, but I’ll write more about this). Given where I am today with treatment decisions, with significant unknowns about the extent and reach of the cancer and my clear acceptance that this cancer may be life threatening – its time to acknowledge that life as I have known it is ending. And more importantly – to take charge of both the end of that life and the beginning of a new one.