July 25, 2005

Something to Think About

I was home one day watching one of several videotapes of Steven Spielberg's Taken, when the little girl who narrates the film said something like this:

When you find yourself in the middle of your life,
and you're nowhere near where you were going,
how do you find a way from the person you've become
to the one you know you would have been?

I think that we can only help each other.
And never give up!

July 31, 2005

My Story


I don’t know how long this is going to run, so I’m going to break it up into parts.

Please bear with me; I believe this information is important—it is to me—and may, I sincerely hope, be important to others. I’m kind of a private person; I certainly don’t like to talk about myself very much, but I think that what I want to say overrides my inclination toward privacy.

I have had two kinds of cancer. The following posts will describe how I have dealt with them. It will take years to determine whether we have effected a cure for either.

Physicians: If I say something that is just patently wrong, please give me your comments and make your case. I’ll be happy to correct the appropriate post if necessary.

Constructive comments are indeed welcomed and encouraged. We, as survivors and families of survivors, need to support one another, learn from one another, and help one another. We are not alone.

A favorite tee-shirt that I bought at my physician's office, Dr. Charles Myers:

www.prostateforum.com/default.htm

says, quite simply, "Surviving Is Living to Tell About It".

So here I am, telling about it.

First, I must ask, please, no sympathy. Sympathy, in my view, is appropriate for funerals and divorces. I am very happily married and a long way from being dead.


Part 1—a little history

When I was 10, my Mom developed throat cancer. She had the tumor removed, and its only apparent effect was that she could no longer sing in the church choir. During the next 6 years, she also developed uterine cancer and breast cancer; both cancers were surgically removed, although she almost died during one of these operations. Well, actually she was clinically dead for a short time, but she fought her way back.

When I was 16, she died. When I look back, the signs were there, but I wasn’t aware of how serious things were. I am thankful that I made her proud of me in my junior year, and I am thankful that I had the opportunity to kiss her good-bye the day before. I didn’t see her the day she died; they called me out of speech class to tell me. One of those moments forever etched in my mind.

Around 35 years later, my father died of a combination of prostate cancer and colon cancer, with additional suffering from unchecked osteoporosis. It was a hard and painful death. He also had a stress-related cardiac condition, but cancer took his life.

So a common thread in my family begins to appear. How I dealt with it is described in Part 2.

Stick with me. Your life might depend on it. Men generally don’t talk about health issues; we should.

August 6

Part 2


John pretends to be an ostrich

Head in the sand. Deep in denial. All I had ever had was pneumonia, bronchitis, chickenpox, and mumps. All of my male relatives lived well into their 80s, so I thought, “no sweat.”

I didn't like doctors. Or nurses. Or hospitals. I have worked with doctors and nurses on a peer-to-peer basis for 15 years as a medical editor helping them publish and, when the white coats come off, we get along fine. That is to say, I don’t like the institution of medicine. I don’t like institutions, generally. I am not one who is easily told what to do. And I thought I was bulletproof. My cholesterol is low, and pulse and blood pressure are normal.

Well . . .

Waking up is hard to do (apologies to Neil Sedaka)

My wife, Ann, and I routinely shop for groceries on the weekend. Occasionally, some outfit or another who has more concern for my health than I did would offer blood tests at the store for various diseases. Ann convinced me, after much reasoning, to have my PSA checked.

My score for PSA (prostate-specific antigen) should not exceed either 2 or 4, depending on which doctor you talk to. Now I personally like 2 as a limit. My first test came back 6-point-something. So I immediately went to the internet, and found “research” that concluded the PSA test was an “unreliable screening tool.” I had no symptoms of any disease.

Roughly 12 to 18 months later, Ann convinced me to have the test again. This time it was 9-point-something. I preferred to have my head firmly in the sand. It was more comfortable that way. Besides, even if I had prostate cancer the likelihood of actually dying from it, statistically, was slim, according to the same sources.

Lies, damn lies, and statistics

Hmmm, wrong. Prostate cancer is a sneaky son-of-a-@%^*# that can kill you while you pretend to be a big bird. Very fortunately, for me, this wasn’t all that my body had in store.

How to get a hernia while you’re looking the other way

Natural Bridges State Park in California is a beautiful coastal park. We went there on a visit to my oldest son and daughter-in-law and their son. The tide pools are among rocks that get slippery as the tide goes in and out. My oldest grandchild, who was three years old, was walking by himself, and understandably had some trouble navigating the rocks, so I picked him up. And I felt a twinge. Aw, hell, I’ve had hernias before, and guess what? Another inguinal hernia. Been there, done that. Can do it again if I have to. It was August 31, 2002.

One of these sides is not like the other

At the motel that night, I confirmed it; push in, it comes back out. Crap. Got to schedule an appointment with a surgeon. Double-crap. Perversely, I thought, “well, at least it’s a surgeon." Surgery is pretty cut-and-dried—if you don’t mind the pun.

Hang in there. In Part 3 it starts to get interesting.

August 6

Part 3


The trip

I didn’t know it, but I was about to embark on a 3-year journey that would change almost everything that I thought was important in my life.

Persistent docs

So I went to the hernia surgeon; he did a digital rectal examination (DRE) and found a somewhat enlarged prostate. No surprise; I was, after all, almost 58 years old. The examination was, I thought, undignified, but I consider them routine now. When he asked me when my last PSA test had been, I fudged and told him I couldn’t remember, hoping he would let it go at that. After all, I had surgery to worry about. Why add to it? He didn’t let it go. He took a blood sample and told me he was going to send it out to the lab.

You are so screwed, John. No more games.

Houston, we have a problem

PSA came back 13-something. The ostrich died on the spot, and the sand washed away. No more fooling around. I realized that the research I had been reading was theoretical and dealt with broad economic issues of testing. In other words, from a personal point of view, it became useless to me overnight. Very suddenly, I knew metaphorically that I had taken a bullet. Now what?

Well, first things first. On October 15, 2002, I got the hernia fixed, recovered from that (wow, I didn’t remember how hard surgery can be!), and made an appointment to see the first urologist whose name I was given, because—very early in this life-and-death game I have been forced to play—I don’t know any better. I was in a state of near panic.

Apologies to Douglas Adams, but it’s true . . .

Rule number 1: Don’t panic!

An introduction to reality

Urologist is a good-looking guy who resembles one of my favorite movie stars. I like his movies and find that reassuring--he saved the world once, so, well . . .. (Logic is not one of my strong points at this time.) He starts talking in terms of “Gleason scores” and “statistical survival rates,” and a certain small amount of discomfort begins to take root in a corner of my mind. Occasionally, he remarks that it’s “all just statistics,” and I realize he’s talking about my survival. However, I understood that if I decide to have a radical prostatectomy (complete removal of the prostate), which is the recommended treatment on the internet depending on which page I have open, the odds may be on my side.

A little diagnostic pain and how to avoid it (important!)

The urologist has to have a biopsy of my prostate to see what kind of cancer I may have (there are grades of concern at the cellular level, which is expressed as the Gleason score—the higher the score, the more concern) and whether it has spread.

A biopsy procedure for the prostate is performed by the surgeon entering your body from the rear, locating the prostate with the aid of ultrasound, and snipping small pieces of it off, to be studied later in the laboratory.

My urologist assured me that I would experience some pressure and minor pain (like a “bee sting”). That was somewhat "misleading." A prostate biopsy is very unpleasant and the more slices they can take, the more accurate my diagnosis may be, so there is no motivation to abbreviate this procedure. The sensation is rather frightening. No, it's just plain scary!

I did not learn until later that many surgeons will offer their patients a local anesthetic. Find a surgeon who does that. This message is important, and those of you who go down this road will thank me for it.

Did I say don’t panic? The treatment decision may be one of the most important decisions of your life--one that you are certainly going to have to live with for a long time. Take a little time. Consider all of your options.

Rule number 2: Never assume.

Stay with me; there’s much more to come in Part 4.

August 12

Part 4


The journey begins

Okay, now to summarize. I got the hernia fixed, and I can walk around. Got a scar from the belly button down to as far as it can go (relevant later). PSA is bouncing from 11 to 13 but is relatively stable (not great but not horrendous, either). Gleason score is either 8 or 9 (out of a possible 10) depending on which pathologist is reading it. Not good. PSA could have been much worse (some guys run over 100 or more). Low PSA and low Gleason are the best possible combination. I don’t quite have either. I chose a radical prostatectomy (RP) as my first option. All I was thinking is, “get this thing out of me.”

Perhaps it wasn’t the best choice, but I will never know. I took my best shot at the time.

An aside

I need to explain that I work for a multinational health textbook publishing company. We have an outstanding insurance plan. In addition, I am accustomed to dealing with the health professions on an informal, questioning basis. It’s what I get paid for, so I carry that attitude over into my relationships with my new doctors. This will pay off big, later.

Once more, into the brink . . .

Surgery is December 18, 2002. Not too difficult. Recovering from hernia surgery was actually harder. Need to learn to pee all over again (the prostate surrounds and is attached to the urinary tract, so some tubes inside have to be reconnected, and they are kind of traumatized). Very sore stomach area, even though the urologic surgeon used essentially the same incision area as did the hernia repair surgeon.

Post-surgery, the report is that apparently the cancer had not spread and that they got all of it. I am thankful to the point of tears and assume a complete cure and a long life ahead of me. Follow-up CT/PET scans show no metastases to the lymph nodes or liver.

Bone scan is negative.

My surgeon is my hero.

#%&*!

Less than a year later, PSA rises from 0.4 (I should have known I had a potential problem then—PSA should have stayed around <0.01, or undetectable) to 2.4. Cancer is back.

FYI: I have come to think that the cancer’s return is due to micrometastases in the area adjacent to the prostate. Perhaps if I had had radiation therapy right after surgery, the prostate cancer may not have returned. However, it isn’t useful to dwell on this possibility; it doesn’t reflect reality. This is the thing about prostate cancer: right now, there seem be almost infinite possibilities. It is not, in medical jargon, a “well-understood” disease.

I talk to my surgeon; he talks about statistics. I talk about research, and he mumbles something about “throw-away journals.” I ask him for an educated prognosis, and he gives me 10 years, max. Uh-oh.

Like hell. I need another doctor. I’ve worked with these guys for a long time helping them publish their research. I know they are not gods. And this guy isn’t even taking the time to stay abreast of the latest research. There is a final straw in our relationship; more on that later.

Click here for Part 5.

Part 5


More searching

I called a well-known urological surgeon, and I also corresponded with him by email. I asked him to recommend someone really, really good.

This time I want a medical oncologist, or someone who specializes in treating cancer. I am referred to a physician at The Big Hospital who has an Ivy League med-school degree. Makes sense to me. I mean, you would want to go to The Big Hospital too, wouldn’t you? I have a solution! This is January 13, 2004. My PSA is 2.5, and the tumor mass in my lymph node is approximately 3 cm. Could be much worse.

Three appointments later I find that “this dog don’t bark” either. He is incredibly intelligent, and he knows a lot of research, but he talks down to me from Mt. Olympus and has learned to “always say ‘no.’” He has developed a standard protocol that protects him from lawsuits, and will go no further. Appointments are limited to 15 minutes, and as that time approaches you can tell he is impatient. I get no help, and he answers none of my questions. He thinks I’m a smart aleck, and I think he’s a pompous ass. This is in the spring of 2004. Leaving him behind, I start looking elsewhere. After the last appointment, I'm almost in tears from frustration.

This is where it gets really good.

Finally! An end to the search:

http://www.prostateforum.com/default.htm

If you need to know the facts about prostate cancer, and read in layman’s terms about all of the latest research, make this a prominent bookmark on your homepage and read everything on this website. Also, subscribe to the newsletter; I do.

This is my doctor--Dr. Charles Myers. He also has prostate cancer, and he is in remission. His PSA is less than 0.01. This is what I want.

In Part 6 I learn a very important rule.

Part 6

Rule number 3

In part 5, I discovered and met Dr. Myers, the prostate cancer specialist in Virginia.

I had read in his newsletter about how he had decided upon his own treatment from other specialists. (1) I was surprised to read that he, himself, had run into the same shortcomings from other physicians that I have described earlier and how dissatisfied he was, and (2) I was very interested to learn about how he approached his decision-making, with the help of his wife. Basically, it comes to this:

Rule number 3: You decide whether the treatment option or options are demonstrably effective, and if the side effects are not worse than the effects of the disease you are treating, then you must decide to go with the treatment.

I read that and thought that I had learned it.

Serendipity

Dr. Myers’ prostate cancer was very similar to mine, so I decided “what better example could I possibly follow?” It involved radiation therapy and also hormone therapy—reducing PSA to the neighborhood of <0.01, and then proceeding with a radiation treatment called intensity modulated radiation therapy, or IMRT.

It will be obvious why I chose it. I also met a really good radiation oncologist at St. Luke’s hospital in Chesterfield, Missouri, Dr. David Butler. He does his research, he shares it with me, and he answers all of my questions honestly. He doesn’t even mind a little debate. I consider him a friend. I met him because he was featured on the local news.

The other option was something called “3-D conformal radiation therapy,” a somewhat older method that Dr. Myers had undergone. I read about his side effects and his statement that were he to choose again—now that IMRT is an option—he would choose IMRT. So of course I did. I had 35 treatments, starting July 28, 2004 and ending September 16.

Just stay with me. Lots more equally important stuff to come in Part 7.

Part 7

A valuable insight

Hormone therapy (or Lupron shots) every 3 to 4 months are prescribed for me, depending on dosage, and cost anywhere from $2500 to $3000 a pop. Lupron shots "fool your body" into believing that is doesn't need to produce testosterone, the male hormone that causes prostate cancer to grow. Health insurance is a good thing. I pay almost nothing. Side effects from Lupron shots include “hot flashes” –just like your wife’s (although I think mine were worse), loss of muscle tone, and a thing called “emotional lability,” which means I will cry for any reason at all. Hot flashes are really unpleasant. The crying is, at worst, embarrassing. However, I eventually learned to control it.

I really learn to empathize with my wife. For the first time in my life, I understand what women deal with. Oddly enough, I also learn to listen instead of talk. This is appreciated by both of us and adds an entirely new dimension to our relationship. In adversity, I have gained much of value.

There is a standard protocol among most physicians for administering the first Lupron shot, because the first shot tends to produce what is called a “testosterone flare,” or a temporary increase in testosterone production. Obviously, I do not want this. A little white pill, called Casodex, is normally administered daily for a week before the shot; this prevents the flare. A good thing. However, I needed my first Lupron shot before I found Dr. Myers, so I returned to Dr. number 1; remember the movie star? A mistake on my part. He does not follow the protocol, so I will not take the shot in his office. I have my medical records transferred to me and tell his nurse that I won’t be back.

FYI: I find my medical records interesting reading; they contain information that I was not given, plus the occasional personal note from a nurse who does not like me. Well, I didn’t like her either. And anyhow, how is our relationship relevant to my medical treatment?

Shortly thereafter, his partner calls me at home. Wow, this is a first. He expresses concern that I am trying to treat myself. I reassure him that this is not the case and ask why I was not offered Casodex before Lupron. He says Casodex is very expensive. I think, “Excuse me? Who are you to decide what I should spend to take care of my health?” I don’t say it. I remain polite. On February 18, 2004, I go back to The Big Hospital and the Big Ego for the last time for my first Lupron shot. At least he knows what the proper protocol is, and I get the Casodex first.

See what can happen if you don’t do your own research? There is a lesson here, and its

Rule number 4: Do your own research

*&%#!, again!

Okay, so I have had surgery, hormone therapy, and radiation. Now what? I am really tired.

Still more to come. I don’t know it yet, but I am approaching a corner in Part 8 with some bad news on the other side.