Sunday, December 26, 2010

Winning the Battle With Prostate Cancer: a very personal story, Part III

Friday May 28, 2010 was the scariest day of my life. And even though I had done the research and was satisfied that I had made the right choice for me and the quality of life I wanted to lead there was still a lot I didn't know about the radioactive seed implants- - -a lot the literature just didn't speak to, at least not in detail. The docs at Moffitt Cancer Center, a urologic surgeon, a radiation oncologist and, of course, an anesthesiologist had each spoken to me as I laid on the gurney in the pre-surgery prep area. They confirmed what I already knew: that they would use long, very fine needles to insert 53 radioactive titanium seeds in strings of 5 or 6 each through my Perineum and into my prostate gland in a pattern devised to be close to the cancerous areas in order to kill off those cells while leaving healthy tissue and nerve bundles untouched. And while this procedure is far less invasive and physically less risky than a radical removal of the entire gland, it is not fool proof. If not done properly it can fail to kill off the cancer cells, create extreme bladder and bowel problems and damage the nerve bundles attached to the prostate- - -the nerve bundles critical to male sexual function. These issues are of deep concern to men. No man wants to be put to sleep full of hopeful expectations for a better life free of disease only to wake up and find out that he might spend the rest of his life wearing adult diapers and the last moment of intimacy he shared with someone might have been his last ever. As I said, it was a very scary day.

And so, with those thoughts in mind and a waiting syringe full of Propofol, otherwise known as "milk of amnesia" and the anesthetic that killed Michael Jackson, I was wheeled into the operating room. Five hours later I was awake, discharged and on my way home to rest and work my "plan for recovery and remission." After all, I had done countless hours of reading and was certain I knew what to expect. I was wrong.

The first part of my plan was tied to my notion that "the healthier I was going into this the healthier I would be coming out of it" so, after resting on Saturday, Sunday and Monday and with the approval of my doctors, Tuesday morning I was back in the gym on a very limited exercise regimen- - -some low level cardio and light upper body weights. No lower body weights and no core exercises. I was back! I still had the big red "S" on my chest, by gosh. I would get through this recovery with ease I told myself. And, again, I was wrong.

What all the research and all the pre-surgery consultations with the doctors failed to do was to prepare me for the extent of the effects on areas of my body near the prostate gland. It also failed to prepare me for something called "cancer fatigue" and how that would change my lifestyle and my mood on a day-to-day basis.

Body functions we take for granted and do reflexively suddenly became difficult and required concentration. Those simple functions were also painful initially. Spasms as strong as leg cramps attacked my bladder and knocked me to the floor in agony at least twice a day on most days in the first several weeks. Sitting in a chair was not a restful thing after 15 minutes or so. And then there was the incredible lack of stamina and energy.

As I said before I've always been an active guy. I took pride in maintaining my home, my lawn and my pool and doing repair projects myself. Now all of a sudden I had to hire someone to do all these things for me. I had no energy. No reserves. By 12:30 or 1:00 PM each day I was completely fatigued. Finished. Spent. And I was also really angry that I could no longer see the red "S" on my chest and had no idea where my blue tights and red cape had gone. Superman was not only no longer super he had also turned into an angry, snarly jerk who wasn't always very nice to be around if you were part of my family or one of my closest friends on the days when the physical realities and the fatigue converged to blacken my mood. Unfortunately, during the first 90 days or so those times were more the rule rather than the exception. But, fortunately, in addition to having always been active I've always been stubborn and determined. So I kept getting up early 5 days a week and going to the gym, very gradually increasing my exercise regimen. Slowly my stamina started to return. And thanks to the physical exercise and part 2 of my plan, the cancer cells stopped growing and started dying.

Part 2 of my "plan for recovery and remission" involved something I had read about but never tried- - -the use of mental imagery to focus the body's own energy. Each night as I lay in bed, all was quiet and I was alone with my own thoughts, I imagined that I was summoning up energy from other relaxed parts of my body- -legs, arms, toes, fingers- -and focusing that energy like a hot laser beam on my prostate. In my mind's eye I could see that beam of energy killing off the cancer cells and the dead cells flying out of my body. I repeated the process each night and again each morning as I awoke and everything was quiet and still.

Laugh if you want. Even sneer if you'd like but, all I know is that by doing those two things along with listening to my doctors carefully and accepting the prayers of my friends, within 90 days my PSA level was down to 0.78 ppn and 90 days after that I was in remission with no current evidence of disease.

But this isn't quite the end of this story. Like all such stories there are lessons to be learned and in the next post I'll share some of those with you.

Sunday, December 19, 2010

Winning The Battle With Prostate Cancer: a very personal story, part II

Part II

After getting over the shock of the diagnosis, as I wrote about in the previous blog, it was time to map out a battle plan.

Because my prostate cancer- -a slow growing cancer- - was diagnosed as being in an early stage, Stage T1C, I knew I had time to fully research my treatment options. So, I sat down at the computer did the requisite Google search for "prostate cancer treatments" and came up with a mind boggling array of entries, well over 10 million! Rethinking the search and changing it to "best prostate cancer treatment centers in the US" reduced the results to about 2 million entries- -still too much to wade through. So, I started with the first place everyone in the US thinks of when you think of first-rate health care, The Mayo Clinic. And to be sure, they had a wealth of information readily available on the web for free. But not satisfied with relying on only one source for information- -no matter how outstanding a reputation they may have- -I called my doctor and asked for some other sources. He suggested the Cleveland Clinic and Tampa's own Moffitt Cancer Center.

I had already known Moffitt's reputation as a cancer treatment center and through a friend had been referred to the chief of urological surgery there. And while I was quite certain that whatever treatment option I selected I would have done at Moffitt I wanted to be completely satisfied that I was selecting the right treatment for ME and the way I wanted to lead MY life. In order to do that I needed information, lots of information. And that information needed to be current, clear, understandable and statistically definitive. I didn't want it to be full of weasel words and terms such as; may, might, in some men, in some cases, no one can say, there is some anecdotal evidence, and so on. So without boring you with stats on the number of hours I spent sitting at this computer doing research let me tell you the 4 places I found to have the greatest wealth of information about prostate cancer and its treatment.

4. The Cleveland Clinic- in terms of general health care in the US, these folks are second only to The Mayo Clinic in Rochester, Minnesota. Here's where you start with them:

3. The Mayo Clinic- everyone knows the Mayo Clinic. For their info set on prostate cancer start here:

2. Memorial Sloan-Kettering Cancer Center- this famed NYC hospital has probably treated more VIPs than any clinic in the US other than the Mayo Clinic. For their take on prostate cancer start here:

1. Johns-Hopkins University- This Baltimore, MD medical center is the first choice of our nation's political leaders and foreign leaders as well. You can start here:

Again, since the point of writing this is to help men navigate their way through information in order to make a better decision, let me tell you bluntly that, in my opinion and based on countless hours of research, Johns-Hopkins has the greatest wealth of comprehensive, clear, concise, understandable and straight forward information about prostate cancer treatment available- -period. Their "health alerts", bulletins, "special reports" and white papers are complete, current, candid and most importantly, they are unambiguous and totally devoid of weasel words and terms. One of the best decisions I made in my battle with prostate cancer was to immediately download their report "Choosing the Right Treatment for Your Prostate Cancer." You can get that report here:

The decision to download this report and other reports published by Johns-Hopkins led me to make choices that helped me overcome this disease in just six short months instead of the 18 to 24 months I had been given to expect. Let me tell you about one other decision- -a very important decision- -that also contributed greatly to such a positive outcome. A simple and logical decision, really.

I've always been a pretty active guy and at the time of my diagnosis I was going to the gym and working out 3 days a week. My work outs were complete- - -lower body, upper body and core - - -and my aerobic health was reasonable but, I knew I could be healthier and it seemed logical to me that no matter what treatment option I chose and when I had it done, the healthier I was going into this battle then the healthier I would be coming out of it. So within a week of my diagnosis I stepped my gym workouts up from 3 days a week to 5 and increased them in both intensity and duration losing about 25 pounds and gaining in aerobic, therefore cellular, health in the process. I cannot over-emphasize how important this turned out to be.

Then after digesting all the information I had gotten from Hopkins and satisfying myself about issues like:

. Treatment risks
. Success ratios
. Duration of treatment
. Appropriateness of treatment for early stage versus late stage cancer
. Radical removal versus other options
. Loss of bodily functions
. Loss of intimacy
. Quality of life after treatment

I discussed my options with my doctors, other men who had won the battle and with certain members of my family. I asked for their opinions and got them.

My doctors were somewhat predictable. I could do nothing- -the watch and wait approach- - and reasonably expect to live another 12 to 15 years or so but with a very poor quality of life in the last 3 to 5 years. I could opt for intensive external beam radiation and expect complete remission but run the rather high risk of long-term incontinence, poor bowel function and a permanent impairment of sexual function. I could also choose radical removal and because of an early diagnosis I would be almost 100% certain of complete remission but still face the same body function issues or . . . I could opt for a less invasive procedure, radioactive implants.

The men I talked to were about equally divided. Approximately half of them opted for either radical removal or intensive external beam radiation because they wanted the cancer out of their bodies as quickly and expediently as possible- -all the other consequences didn't matter to them. Of the other half, about 50% opted for radiation implants and the remainder chose to "watch and wait". Much to my surprise my family felt that whatever option got the cancer out of my body and put my recovery chances as close to 100% as possible was the best option. The rest didn't matter to them. Keeping me around for as long as possible was their main goal and they were completely clear about their feelings.

But in the end it was my choice and mine alone. I DID NOT want to wind up wearing Depends nor making 6 to 8 trips to the bathroom during the day and 3 or 4 more at night. I DID want to preserve my options for intimacy and I DID NOT want the disease and it's treatment to dictate to me on a long-term basis in what activities I could- -or could not- -take an active part. So, radioactive implants became my choice and the procedure was scheduled for May 28, 2010. . . the scariest day of my life. Why? Well, I guess that is next week's blog.

Saturday, December 11, 2010

Winning the Battle With Prostate Cancer: a very personal story in four parts.

Through FaceBook messages, e-mail and phone calls from many of you I've been asked, "Hey, where is The Sage of Tampa? We haven't heard much from him over the past several months." I'm flattered by that and glad to know that for a few of you the voice of The Sage was appreciated and missed. So, where has it been? Well, honestly, I have a pretty good excuse for where The Sage has been for the last 10 months.

Battling prostate cancer- -a battle I am winning- - left me with precious little reserve energy to deal with anything other than my own immediate needs, especially since I was determined to keep the burden of coping with this disease off the backs of my family and friends and on my own back instead. I just didn't have the time or the energy to be prostate cancer's meanest adversary and the voice of The Sage too. Now I do.

Within the past 10 months there have been three very memorable days; one shocking day, one very frightening day and one highly rewarding day. The shocking day was February 24, 2010 the day my doctor confirmed the lab tests and confronted me with the diagnosis of Prostate Cancer. The frightening day was May 28, 2010 the day 53 radio-active seeds were surgically implanted in my body and began bombarding the cancer cells with radiation on a 24X7 basis- -a process for which all my research and the best information the doctors at Moffitt Cancer Center could provide me- - had left me inadequately prepared for the impact on me physically and mentally. The highly rewarding day was Monday, December 6, 2010 when after just six short months from implantation the docs at Moffitt Cancer Center officially declared me to be "in full remission".

Of course, being "in full remission" is not the same as being "cured". That pronouncement will come when I have been cancer free for 5 years. But being in remission with "no current evidence of disease" is the first major milestone in that journey and it's one I'm happy and lucky to reach.

Some may ask, "why tell this highly personal story?" I’m telling it in the hopes that it will spur more than one man over the age of 40 to listen carefully to his doctor or cause more than one woman to push her stubborn mate to get an annual PSA test. I also share this story because when I first started researching my treatment options last February I was amazed at the lack of non-clinical, first person information available to me. So, I made the decision that when, NOT if, I prevailed against the disease I would put the information out there for others in hopes of helping them understand what happens AFTER the diagnosis and how they can take a proactive approach to winning the battle with prostate cancer. So that's where this story begins, with the diagnosis.

The long run up to that diagnosis began with the usual annual DREs (Digital Rectal Exams) - - -a procedure that leaves men over 40 very wary of the sound of rubber gloves being snapped into place behind them- - - and later, continued on with 15 cautious months of monitoring a PSA (Prostate Specific Antigen) level that steadily climbed from 1.8 ppn (parts per nanogram) to 8.4 ppn.

Why is the PSA level (determined through a simple blood test) so important? Because any level over 2.0 ppn raises red flags. It tells your doctor that something is going on. And a level beyond 4.0 ppn sets off alarms and sirens alerting your doctor that more information is needed and some action needs to be taken. But this test is known to have flaws and there have been many instances of false positives. Men with levels well under 2.0 have died from in situ prostate cancer and men with levels approaching 20.0 ppn or higher have been found to be cancer free. The only sure way to find out if it’s prostate cancer rather than some other prostate malady is the dreaded “needle biopsy”.

The needle biopsy, although done in the doctors office with a local anesthetic, is a highly uncomfortable and very undignified procedure that most men would like to believe doesn’t exist and very few will discuss. It is also a procedure women liken in terms of discomfort and lack of dignity to having a breast biopsy once a mammogram identifies a suspicious area. In fact, the two procedures are nowhere close in comparison.

For women, when a mammogram turns up a suspicious lump or nodule they too, are often subjected to a needle biopsy to confirm the presence (or absence) of cancer cells. And while moderately painful (as my wife has told me) it usually involves only one needle stick which, thanks to the mammogram images of a comparatively easily x-rayed breast, can be quickly guided to the suspicious area. But, because the prostate is small- -about the size of a large walnut- -and located deep inside the lower abdominal cavity, prostate cancer cells cannot be “seen” by x-ray, CT Scan or MRI processes. Thus, there is no way to locate a “suspicious” area much less any imagery to be used to guide a needle probe to a specific spot. Enter the “biopsy gun”. Literally.

The biopsy gun is a hand-held device with a spring-loaded, slender needle. It is inserted into the rectum and, along with the use of trans-rectal ultra sound to locate and image the prostate, the gun’s needle is propelled through the rectal wall into the gland. This is repeated anywhere from 6 to 18 times (12 in my case) making sure that core samples are taken from all quadrants of both hemispheres of the gland.

No matter what the doctors tell you- - -no matter how much literature they give you to read prior to the procedure- - - nothing can adequately prepare you to deal with the sound of that needle being snapped through the rectal wall and into the prostate; the incredible discomfort of the gun being in there, the pain of the repeated needle pokes and, certainly not, the terrible indignity of the ordeal. But, the process is a must if one is to correctly diagnose the disease, select a treatment protocol and, hopefully, save a life. And for heaven's sake don't be fooled by claims of being accurately diagnosed by x-ray or ultra-sound. In the end, the needle biopsy is the ONLY effective method of determining the presence of cancer cells and to what stage the disease has progressed. The earlier it is found the better, of course, thus the needle biopsy though nasty is worth enduring. So when faced with it, the only choice is to man-up and shut-up.

Once the biopsy confirms the presence of cancer and its severity the patient and his doctors select a treatment method that can range from external beam radiation to internal radioactive implants or, in the most advanced cases, to radical surgical removal. Chemo-therapy is NOT a viable option for this form of cancer- - -yet.

Because my cancer was at its earliest stage- - - stage T1C- - - I had the luxury of time after that awful diagnosis to fully research my treatment options and make an informed choice. In the next blog post, I'll share alot of that information with you and show you the best sources I found for getting that information on your own. I’ll also share with you some important decisions I made while doing that research, why I made them and how they can save your life as they have mine.