In your average Hollywood cancer film, things are nearly always cut and dried. “I’m sorry,” intones the solemn doctor, “there’s nothing we can do.” It would take too much screen time and distract from the storyline to show everything that can happen between early detection and late-stage cancers. Instead, the noble soul with “incurable” cancer comes to term with the inevitable, and everyone around them, including the audience, weeps.
So it’s not surprising that so many people, when exposed to a friend or family member’s cancer diagnosis for the first time, go straight to panic mode. They freak out. They can’t deal with it. Older people especially have memories of cancer from decades past, when people were diagnosed (usually very late stage) and then slowly (or quickly) died. In spite of whatever you tell them about your cancer diagnosis, some of your friends and family start planning your funeral, mentally. Often they back away quietly and you don’t hear from them for months or years. Or, no matter how many times you tell them the treatment is effective and you feel fine, they ask “Are you tired? Have you been able to work?” every single time you see them. They are seeing that film again, the one where it takes less than two hours to go from diagnosis to death.
Of course cancer is a frightening event. You can’t help but panic when you are told that cells in your body have declared war against you, that they are out of control and won’t die, and if left unchecked they will invade healthy organs and tissues and eventually shut down the body’s systems.
But in between an early diagnosis and death, there are years of living and a whole lot of one thing: uncertainty. Medical advances in the last 40 years have created incredible tools for finding and killing cancer cells. But they’re still not completely reliable or useful. Some cancers are relatively easy to detect. Some tumors can be located easily. Others are difficult to pin down. And even when you think you know what’s happening, the unexpected happens.
A close family friend was diagnosed with a tumor surrounding his lungs in 2006. It was of course traumatic for the family, and as friends we were not well prepared. He was only the second person I knew well who had cancer. The frightening thing about his tumor was that it was “of unknown origin.” The oncologists couldn’t say where it started or why. So they treated it with chemotherapy, and for about a year it was effective. The tumor shrank. Quality of life returned, his hair disappeared. Our friend and his wife went on a short vacation in the summer of 2007, because things were looking good. But when they returned, he was having trouble breathing again. The tumors were back, and this time the chemo was less effective.
When I was diagnosed, this couple generously came over to our house one night and talked about cancer. They were in a good place at the time, and could laugh a little and talk with some perspective. And they shared a memorable analogy: dealing with this cancer for them was like opening a big, wrapped package. At every stage of diagnosis and treatment they were able to pull off another layer of wrapping and see a little more of what was inside. After different tests and multiple rounds of chemo, it was becoming clearer what the cancer was about and how it might be treated. But during the entire process, and really, up to the end of his life, it was never completely clear what they were dealing with. Why did the cancer retreat for almost a year, then return? Where did it come from? Why couldn’t the oncologists find an effective treatment?
As you go through a diagnosis, submit to multiple tests, and then try to decide what the best treatment will be, there are increasing levels of anxiety that you deal with. My diagnosis was not unusual – my cancer was somewhere in the middle, not as easy as many but not nearly as bad as others. Prostate cancer can be detected by DREs and PSA tests, and confirmed with biopsies. But you can’t easily tell if it has spread or how far. X-rays and scans can’t find or confirm microscopic tumors, and when prostate cancer spreads, it starts in minute quantities. A few cells drift through the lymphatic system or into the bloodstream, and it takes months or years for them to have grown enough to be visible in a scan. That’s why PSA testing is the standard tracking method: for almost all prostate cancers, the cells produce PSA and thus can be monitored. If the PSA goes up, the cells are spreading. But you won’t know where or how extensive until there is significant growth. Even then you may know where the tumor is only because it creates pain in the bones or other tissues.
But that’s all late-stage talk. Early diagnosis still has its share of uncertainty. From February 23 until April 6, the date of my prostatectomy, I went through multiple rounds of uncertainties as different tests added little bits of information.
The first major test after the biopsy was a bone scan. My Gleason score was 4+4, which means the tumor is aggressive, which means the cancer could have spread to bones already. (It can spread to soft tissues like lymph nodes, but a bone scan only detects problems with bones.) So Dr. A scheduled me at the local hospital. On Thursday morning I was injected with a radioactive tracing substance, which would move through my bloodstream and settle in any bones where there was damage or unusual activity. They asked whether I had broken any bones in the past, because any damaged bone would show up in the scan.
A few hours later, I returned and was put into a huge gamma scanner machine, laying on a table that glides into a large tube. They wrapped me up securely and told me to hold still for an hour, then the table very slowly moved through the tube as the scanner hummed. I was wrapped up, head propped on a pillow and turned sideways, hands snug in a towel so I could relax.
The scan wasn’t all that bad. The technician told me that, if the specialist monitoring the test saw anything that looked questionable, they might need me to stay for an additional x-ray. But after listening to a 70s rock radio station in the semi-dark for almost an hour, I got off the machine, put back on my ring and belt and whatever was in my pockets, waited a few minutes, and then was told I could go. They even gave me a small negative printout of the scan, with my bladder glowing brightly compared to everything else. (The radioactive tracing stuff is excreted in the urine within a day or so.) The print was too small to see any detail, but was that a light spot on my hips? How about my right knee – was that where I’d injured my knee and that’s why there was a hint of light?
The scan was on a Thursday, and the following Monday I was in Dr. B’s office for an evaluation. Even though I had no obvious reasons to be concerned – early detection, low PSA, they didn’t ask me to stay for extra x-rays – I fretted for those four days. If the bone scan did pick up anything, it would be bad. Surgery would probably be out of the question, and I’d go straight to hormone deprivation for treatment. The possibilities seemed huge and horrible. I wanted to call the hospital and ask if they’d tell me the results, then I’d remind myself that they probably wouldn’t and that I was overreacting anyway. Back and forth, I worried myself into a state of ongoing anxiety.
It’s that time of worry and waiting that you have to adapt to with a cancer diagnosis. I found out later that I could have asked the hospital for the results – all medical test results are the property of the patient, and they can’t withhold your own information from you. As long as the reviewing physician or specialist has signed off the report, you can get your results. But you may not want them if there’s no one to interpret for you. Imagine the level of stress if I had received a report that there were suspicious spots, but no doctor to discuss that with.
That bone scan was just one step in living with uncertainty. It definitely brought home to me the seriousness of the diagnosis. In retrospect, I can see that I worried much more than was needed, but how do you know? When you’re living a day at a time through a huge life change that is potentially life-threatening, there’s no easy way to know what to expect or when to panic. I suppose the best thing about that bone scan was that, of all my diagnostic tests, it was the only one that came back with good results, really good. At least we could rule out metastasis.
A great book to help you deal with the people in your life who can’t handle cancer is Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope. The author is a lung cancer survivor and used extensive interviews with cancer survivors to create a list of 20 rules for helping people with cancer. Ultimately, there’s no single way to approach it, but the book is great for getting perspective on what to say to people, when to let them know they’re not helping, and how to encourage them to be truly supportive.
Sunday, April 20, 2008
Friday, March 7, 2008
Choosing a Medical Team
The internet is a blessing and a curse when you’re confronted with a serious health issue. Endless web sites have thousands of articles and opinions about causes and treatment, and the sources range from reputable research to outright quackery. You’ll find passionate arguments for and against every possible treatment. Some sites tell you to watch and wait after a diagnosis, while others walk you through a decision tree with all the standard medical options.
Sitting at home on the Friday evening of my diagnosis, I was dazed and overwhelmed. I started by googling “prostate cancer” and quickly became lost in the maze. There’s no single source of information, just a lot of web sites that all appear to be legit and important. But where do you start?
I spent that first weekend reading horror stories of hormone deprivation and surgery, incontinence, impotence, and watchful waiting. I found out quickly that it’s an old man’s disease, and men in their 50s feel that they’re in it too soon. Not many web sites consider what the man in his 40s is going through.
The real problem that weekend was that I had no concrete information from the urologist except that 2 of 10 biopsy samples contained cancer. That sounded somewhat hopeful – at least my prostate wasn’t riddled with cancer. But as I waded through Gleason scores and cancer staging, I realized I had no idea yet where I stood. And even a weekend is not enough time to begin to assimilate all the information you need to start making decisions.
So on Monday my wife and I met with the urologist. And this began our experience of choosing a medical team to work with. I read many times over the weekend how important it is to choose an oncologist you are comfortable with, and the importance of getting the best one you can find. But how do you do that?
We met with Dr. A in his office, on his lunch hour. To his credit, the man was willing to squeeze us into his schedule quickly so we could start dealing with this news. He did a fairly good job of explaining all the terms and the pathology report. Cancer in two of ten samples means it may not be widespread, just a small tumor. In the DRE, Dr. A felt some unusual texture on the left side of the prostate, but no obvious tumor/lump, so we could hope that it had not extended beyond the prostate capsule. However, the pathology rated the cells as a 4+4 on the Gleason scale, meaning that it was aggressive. We needed to act soon. In prostate cancer terms, “soon” means within a month or two as opposed to waiting 3-6 months to see if it’s progressing. “Soon” does not mean “let’s get you into surgery this week” the way it can be for other types of cancer.
Dr. A even introduced the Partin tables* to show that, if the cancer had indeed not spread past the prostate margins, my odds of success were looking very good. He explained that, even though I had a high Gleason score, my low PSA number meant it was unlikely (less than a 10 percent chance) the cancer had spread to lymph nodes or seminal vesicles. So he used the tables to try to give me hope that surgery would be highly effective. He is, after all, a surgeon. (As it turned out, one lymph node was found with cancer, and there was seminal vesicle involvement. So I was not in the lucky 90 percent.)
After his sales pitch on surgery, we agreed with him that radiation didn’t seem right as a primary treatment – if the tumor was in fact confined to the prostate, surgery would give us the chance to remove it and be done, and it’s an aggressive tumor. Radiation is less precise and more likely to give temporary results that could change later on. And with an aggressive tumor, radiation would be less likely to stop it completely. It might have been a mistake not to ask to talk to a radiation specialist, but at the time we were overwhelmed and, for whatever reason, surgery felt right to us.
Dr. A prefers to do perineal surgery for prostate cancer, which puts him in a minority. He described to us how much more quickly you heal from perineal surgery. Maybe for some men recovery time is a big deal, but it was low on my priority list. When we asked about sparing erectile nerves (at least I had read enough to know that was an issue), he said “we’ll do our best, but I can’t guarantee anything” because it was possible that the tumor had spread on the left side where the nerves are found. To do it right he’d need to take additional tissue surrounding the prostate, which would include nerves on the left side. He then diverted the discussion into the choices for ED treatments, including pills, suppositories, injections, and implants (which unfortunately were prominently displayed on posters in his office; seeing those posters did not help me feel any more hopeful).
In retrospect, I was uncomfortable with his vague answer about nerve sparing. And later I felt justified when I learned that nerve sparing is very difficult to do effectively with the perineal approach. The surgeon just can’t see the nerves and get to them, not nearly as effectively as with the retropubic approach. And it’s difficult to remove the seminal vesicles from the perineal approach, so if the cancer has spread to them you’re in trouble. But Dr. A didn’t tell us that, he just said “I can’t guarantee anything.” Not only that, but I don’t remember any discussion of incontinence other than an assumption that I would have a temporary problem with leaking urine.
Still, we felt very comfortable with Dr. A and left our hour-long meeting feeling that, if he were to be my surgeon, we could do a lot worse. But also in retrospect, I realize that another point was a red flag for me: I asked him how often he performed prostate cancer surgery, and he said he did an average of one or two a week. He had been doing this for 15 years, he knew what he was doing. As I read more and evaluated other options I realized that this is a part-time job for him. He is the one, after all, who did my vasectomy. He has a regular practice where he’s dealing with all kinds of urological issues, and cancer is only one of many areas he works in.
As we came to a decision, and as more information came in, I realized that my surgery would not be a simple one. A large majority of men with prostate cancer can have the prostate removed and never look back. But as it turned out, my cancer was not confined to the prostate, so I would not get away with only surgery and follow-up ED treatment.
After our meeting with Dr. A, my wife started asking around in her network of friends. And one name kept coming up, the lead urological oncologist at the largest cancer center in the state. A family friend had worked with him and told us he was the best, no question about it. Two or three other people mentioned his name as the one that always gets the highest recommendations. My wife got a phone number and called his medical assistant in charge of scheduling. The lead oncologist was out of town for a couple of weeks, but his associate, Dr. B, was available and could work us in next Monday. So my wife had to politely ask if we might not want to wait for the main guy, since we’d heard he’s the best. His assistant diplomatically explained that his associate has slightly better numbers in his results. But we’d be in good hands with either of them. So we decided to meet sooner with Dr. B instead of waiting.
In the end we chose to work with Dr. B, who does nothing but urological oncology and performs 5-10 surgeries a week. His personality and style of working was an excellent fit for us. And he was willing to give us all the information we could handle and let us make treatment decisions. (I have since met the lead oncologist at that center, and while he's an excellent surgeon, I think his personality might not have worked as well for us.) As grateful as I was to Dr. A for diagnosing the cancer and giving me one surgical option to consider, I decided he wasn’t going to be my oncologist. It wasn’t his top priority, and although he had experience, we didn’t feel that it was the best we could do. The important lesson here for us was: get a specialist, get the best one you can find, and don’t look back.
*Partin tables: these extensively researched tables document the odds of having your prostate cancer stay confined to the prostate or extend beyond it, and the odds of it spreading to the seminal vesicles and pelvic lymph nodes. These odds are based on initial diagnosis: PSA numbers, Gleason scores, and DRE results. The tables are widely used, and are 95% accurate, but you should never take them too seriously. As my diagnosis and treatment progressed, I kept finding my odds getting worse, and ultimately my pathology was much worse than Dr. A predicted using the Partin tables. I started as a T2a, Gleason 8, PSA 3.7. I had hoped to be in the lucky 36% of men with these numbers who had organ-confined disease, but I was not. I wasn’t even in the 90% that had no lymph node involvement. My oncologist Dr. B essentially told me to forget about the tables, only because it’s difficult to pin your hopes on numbers from other patients, no matter how many thousands of cases were used in the samples. Every patient has a unique case.
There are plenty of opinions on the usefulness of the Partin tables. Try the Phoenix5 site for a pathologist's perspective, or the Prostate Cancer Research Institute for a general description.
Sitting at home on the Friday evening of my diagnosis, I was dazed and overwhelmed. I started by googling “prostate cancer” and quickly became lost in the maze. There’s no single source of information, just a lot of web sites that all appear to be legit and important. But where do you start?
I spent that first weekend reading horror stories of hormone deprivation and surgery, incontinence, impotence, and watchful waiting. I found out quickly that it’s an old man’s disease, and men in their 50s feel that they’re in it too soon. Not many web sites consider what the man in his 40s is going through.
The real problem that weekend was that I had no concrete information from the urologist except that 2 of 10 biopsy samples contained cancer. That sounded somewhat hopeful – at least my prostate wasn’t riddled with cancer. But as I waded through Gleason scores and cancer staging, I realized I had no idea yet where I stood. And even a weekend is not enough time to begin to assimilate all the information you need to start making decisions.
So on Monday my wife and I met with the urologist. And this began our experience of choosing a medical team to work with. I read many times over the weekend how important it is to choose an oncologist you are comfortable with, and the importance of getting the best one you can find. But how do you do that?
We met with Dr. A in his office, on his lunch hour. To his credit, the man was willing to squeeze us into his schedule quickly so we could start dealing with this news. He did a fairly good job of explaining all the terms and the pathology report. Cancer in two of ten samples means it may not be widespread, just a small tumor. In the DRE, Dr. A felt some unusual texture on the left side of the prostate, but no obvious tumor/lump, so we could hope that it had not extended beyond the prostate capsule. However, the pathology rated the cells as a 4+4 on the Gleason scale, meaning that it was aggressive. We needed to act soon. In prostate cancer terms, “soon” means within a month or two as opposed to waiting 3-6 months to see if it’s progressing. “Soon” does not mean “let’s get you into surgery this week” the way it can be for other types of cancer.
Dr. A even introduced the Partin tables* to show that, if the cancer had indeed not spread past the prostate margins, my odds of success were looking very good. He explained that, even though I had a high Gleason score, my low PSA number meant it was unlikely (less than a 10 percent chance) the cancer had spread to lymph nodes or seminal vesicles. So he used the tables to try to give me hope that surgery would be highly effective. He is, after all, a surgeon. (As it turned out, one lymph node was found with cancer, and there was seminal vesicle involvement. So I was not in the lucky 90 percent.)
After his sales pitch on surgery, we agreed with him that radiation didn’t seem right as a primary treatment – if the tumor was in fact confined to the prostate, surgery would give us the chance to remove it and be done, and it’s an aggressive tumor. Radiation is less precise and more likely to give temporary results that could change later on. And with an aggressive tumor, radiation would be less likely to stop it completely. It might have been a mistake not to ask to talk to a radiation specialist, but at the time we were overwhelmed and, for whatever reason, surgery felt right to us.
Dr. A prefers to do perineal surgery for prostate cancer, which puts him in a minority. He described to us how much more quickly you heal from perineal surgery. Maybe for some men recovery time is a big deal, but it was low on my priority list. When we asked about sparing erectile nerves (at least I had read enough to know that was an issue), he said “we’ll do our best, but I can’t guarantee anything” because it was possible that the tumor had spread on the left side where the nerves are found. To do it right he’d need to take additional tissue surrounding the prostate, which would include nerves on the left side. He then diverted the discussion into the choices for ED treatments, including pills, suppositories, injections, and implants (which unfortunately were prominently displayed on posters in his office; seeing those posters did not help me feel any more hopeful).
In retrospect, I was uncomfortable with his vague answer about nerve sparing. And later I felt justified when I learned that nerve sparing is very difficult to do effectively with the perineal approach. The surgeon just can’t see the nerves and get to them, not nearly as effectively as with the retropubic approach. And it’s difficult to remove the seminal vesicles from the perineal approach, so if the cancer has spread to them you’re in trouble. But Dr. A didn’t tell us that, he just said “I can’t guarantee anything.” Not only that, but I don’t remember any discussion of incontinence other than an assumption that I would have a temporary problem with leaking urine.
Still, we felt very comfortable with Dr. A and left our hour-long meeting feeling that, if he were to be my surgeon, we could do a lot worse. But also in retrospect, I realize that another point was a red flag for me: I asked him how often he performed prostate cancer surgery, and he said he did an average of one or two a week. He had been doing this for 15 years, he knew what he was doing. As I read more and evaluated other options I realized that this is a part-time job for him. He is the one, after all, who did my vasectomy. He has a regular practice where he’s dealing with all kinds of urological issues, and cancer is only one of many areas he works in.
As we came to a decision, and as more information came in, I realized that my surgery would not be a simple one. A large majority of men with prostate cancer can have the prostate removed and never look back. But as it turned out, my cancer was not confined to the prostate, so I would not get away with only surgery and follow-up ED treatment.
After our meeting with Dr. A, my wife started asking around in her network of friends. And one name kept coming up, the lead urological oncologist at the largest cancer center in the state. A family friend had worked with him and told us he was the best, no question about it. Two or three other people mentioned his name as the one that always gets the highest recommendations. My wife got a phone number and called his medical assistant in charge of scheduling. The lead oncologist was out of town for a couple of weeks, but his associate, Dr. B, was available and could work us in next Monday. So my wife had to politely ask if we might not want to wait for the main guy, since we’d heard he’s the best. His assistant diplomatically explained that his associate has slightly better numbers in his results. But we’d be in good hands with either of them. So we decided to meet sooner with Dr. B instead of waiting.
In the end we chose to work with Dr. B, who does nothing but urological oncology and performs 5-10 surgeries a week. His personality and style of working was an excellent fit for us. And he was willing to give us all the information we could handle and let us make treatment decisions. (I have since met the lead oncologist at that center, and while he's an excellent surgeon, I think his personality might not have worked as well for us.) As grateful as I was to Dr. A for diagnosing the cancer and giving me one surgical option to consider, I decided he wasn’t going to be my oncologist. It wasn’t his top priority, and although he had experience, we didn’t feel that it was the best we could do. The important lesson here for us was: get a specialist, get the best one you can find, and don’t look back.
*Partin tables: these extensively researched tables document the odds of having your prostate cancer stay confined to the prostate or extend beyond it, and the odds of it spreading to the seminal vesicles and pelvic lymph nodes. These odds are based on initial diagnosis: PSA numbers, Gleason scores, and DRE results. The tables are widely used, and are 95% accurate, but you should never take them too seriously. As my diagnosis and treatment progressed, I kept finding my odds getting worse, and ultimately my pathology was much worse than Dr. A predicted using the Partin tables. I started as a T2a, Gleason 8, PSA 3.7. I had hoped to be in the lucky 36% of men with these numbers who had organ-confined disease, but I was not. I wasn’t even in the 90% that had no lymph node involvement. My oncologist Dr. B essentially told me to forget about the tables, only because it’s difficult to pin your hopes on numbers from other patients, no matter how many thousands of cases were used in the samples. Every patient has a unique case.
There are plenty of opinions on the usefulness of the Partin tables. Try the Phoenix5 site for a pathologist's perspective, or the Prostate Cancer Research Institute for a general description.
Tuesday, February 26, 2008
Diagnosis: This Can't Be Happening to Me
I’ve never met anyone who wasn’t blindsided when they were diagnosed with prostate cancer. Most men feel healthy when they get the news. If they have any symptoms, they assume it’s a typical prostate problem. The prostate is a touchy little gland, one that most men can expect to have some kind of trouble with at some point in their lives. It's a bomb waiting to go off. Prostates get enlarged, inflamed, and infected, and it’s not always clear why. The prostate is a key part of male sexual health, and yet there’s still not a lot known about why it acts up. Treatment is often a guessing game, and cancer is just one of several things that are routinely checked when things go wrong.
My story is unusual because of my age. And in comparison with many men, I was lucky to have an early diagnosis. In the summer of 2006 I had a physical, and as I have for many years, had a DRE* (digital rectal exam). The doctor didn’t say anything was unusual. I think he just commented on the normal size of the prostate. But he suggested that because I was in my mid-40s I get a PSA** test as well, which was new for me. I don’t know if there was something odd in the DRE that prompted the doctor to request a PSA test, but it's possible that he thought something was off. So on August 1, 2006, I was tested and my PSA was 2.7 – a safe number, but on the high end of acceptable for someone my age. He suggested that I check it again in a year.
I would have waited a year for another DRE and PSA test if I had not found myself at a urologist's office five months later. I had finally decided it was time for a vasectomy after several years of indecision, so on December 15 I went in for the procedure. Dr. A, the urologist, seemed competent and cheerful as he snipped and tied and cauterized. I was, of course, paranoid about such things being done in a delicate place, but I went home and followed instructions for applying ice packs and taking it easy for the weekend.
In the next two weeks the swelling and bruising faded, but so did my erections. I figured it was mostly a psychological reaction and tried not be frustrated. I was looking forward to getting the all-clear so we could proceed with an unencumbered love life. No more condoms, lots more spontaneity. But it never happened.
By mid-January I was so frustrated with weak erections that I scheduled a consultation with the urologist for ED and possible prostatitis. By this point I was sure he had snipped the wrong tubes, cauterized a few too many veins, or caused an infection. But as time passed, a worse problem was that I could feel my prostate most days. It felt warm and sometimes uncomfortable. I had never been able to identify where it was before, but at this point I felt like I was sitting with a hot walnut in the middle of my pelvic region.
The urologist and I talked first about ED and the possibility of prostatitis (a general and vague term for any inflammation or infection of the prostate). His diagnosis checklist included a PSA test and some other blood tests to determine if there was an infection. But when I told him about the glowing prostate sensation, he decided to do a DRE, almost as an afterthought. He wasn't happy about it. The size is OK, he said, but on the left side the texture is odd -- it feels flat and a little harder than the rest of the prostate. So he insisted that I needed a PSA test before prescribing an antibiotic or anything else. Just to rule out something more serious than inflammation.
The PSA was 3.7 this time, a significant rise in seven months. Dr. A left a phone message at my home that he wanted a biopsy. I had heard enough about them to know it would not be pleasant, so I called back and tried to talk him out of it. He just wanted to rule out cancer, he said, even though he didn't think it was likely. Then we could move on to treating the inflammation. I put off the biopsy for another week because of some work commitments, but finally submitted to it on February 21.
In retrospect, it's a good thing Dr. A insisted on the biopsy, but at the time I was annoyed before and furious after. Some urologists can make it a little less than horrendous, but he turned into a cold, indifferent jerk (OK, maybe my perception is a little colored by the experience). "This will be uncomfortable" he said as I lay on my side, knees drawn up toward my chest, butt exposed. "Excruciatingly painful" is what he should have said. He pushed in a rectal ultrasound with one quick motion and I almost passed out. I groaned loudly and tried to breathe through the pain, which was more intense than anything I imagined. Then I endured 10 clicks of what sounded like a staple gun, each time piercing my prostate with a needle. The actual needle pokes weren't too bad, except for two that seemed to hit a nerve and shot pain down along my urethra. Those ones HURT. In all, it was about 15 minutes of blunt, undignified pain. And then they sent me home with reassurances that I might see a little blood in my urine and semen for a few days.
For a day I peed pink and had no interest in finding out about the semen. I was taking the antibiotic Cipro and slowly the discomfort subsided. When I finally did feel up to sex a few days later, there wasn't just a little blood in the semen -- the semen was blood. Bright red, lots of blood. That was scary, and over the next week or two the blood went from red to brown, but it was still blood. When I could ejaculate, that is. I was still having a very mixed experience trying to maintain an erection.
But it didn't really matter because Dr. A dropped the big bomb on Friday, February 23. He called me at work mid-afternoon. The results were back, and he was sorry to tell me that two of the ten samples contained cancer. He told me to bring my wife and meet with him the following Monday at noon. "You won't hear anything else I tell you now anyway, so let's talk about it Monday" he said matter-of-factly. And that was the end of the call.
So I sat stunned in my cubicle, trying to wrap my mind around the biggest shock of my life. The doctor had called my wife at home first, with the same concise news, so she called me immediately and we were stunned together. I didn't know what to do. I e-mailed my manager, said I had just been told I had prostate cancer and would be going home early. I walked out to my car without speaking to anyone, and drove home in a daze.
And I passed the weekend in plain, raw panic. In December, all I wanted was to stop using birth control to free up our sex life. In February, all I wanted was to wake up from a horrible dream: I had cancer.
*DRE: the digital rectal exam is the widely despised part of a physical exam in which the doctor puts on rubber gloves, lubes up a finger, and pokes into the patient’s rectum to feel the prostate. If your doctor is like the one I had for 15 years, he’ll try to lighten the mood by saying something dumb like “OK, bend over and crack a smile.” This is a standard screening method to determine if a prostate is cancerous or enlarged. If a lump or irregularity is found, a PSA test will likely be ordered. If the PSA is elevated, a biopsy is generally the next step.
**PSA: prostate-specific antigen, a substance secreted by cells in the prostate that makes its way into the blood in minute quantities (it’s measured in nanograms per milliliter – that’s billionths of a gram in a big drop of blood). This test has become the standard for detecting prostate cancer. PSA can be elevated due to inflammation of the prostate as well as cancer, however, which leads to frustration when biopsies are cancer-negative. An inflamed prostate produces more PSA; cancer cells produce more PSA than healthy prostate cells. In general, a PSA level above 4 raises eyebrows unless there’s already a history of enlargement and inflammation. Many doctors use an age-based scale, so a man in his 40s is OK with a PSA of 2.0 or less, 3.0 or less for men in their 50s, 4.0 for 60 and older, etc. That’s why my 2.7 test at age 46 was considered acceptable, but a 3.7 six months later was a concern.
It’s hard to find a single, balanced source of information about PSA testing. Although it’s dry, try the American Cancer Society site for starters. There are a number of web sites that will try to convince you that PSA testing is pointless, that the numbers aren’t reliable, that you should never get a biopsy based on a PSA test, and so on. I’ve even had a man tell me his doctor will never order a PSA test and will only go off a DRE for detection. That may be fine if you have a low-grade tumor that isn’t growing, but I’m relieved that my urologist insisted on a PSA test and biopsy. My tumor was very aggressive and waiting a year or two could have allowed it to spread or even metastasize.
My story is unusual because of my age. And in comparison with many men, I was lucky to have an early diagnosis. In the summer of 2006 I had a physical, and as I have for many years, had a DRE* (digital rectal exam). The doctor didn’t say anything was unusual. I think he just commented on the normal size of the prostate. But he suggested that because I was in my mid-40s I get a PSA** test as well, which was new for me. I don’t know if there was something odd in the DRE that prompted the doctor to request a PSA test, but it's possible that he thought something was off. So on August 1, 2006, I was tested and my PSA was 2.7 – a safe number, but on the high end of acceptable for someone my age. He suggested that I check it again in a year.
I would have waited a year for another DRE and PSA test if I had not found myself at a urologist's office five months later. I had finally decided it was time for a vasectomy after several years of indecision, so on December 15 I went in for the procedure. Dr. A, the urologist, seemed competent and cheerful as he snipped and tied and cauterized. I was, of course, paranoid about such things being done in a delicate place, but I went home and followed instructions for applying ice packs and taking it easy for the weekend.
In the next two weeks the swelling and bruising faded, but so did my erections. I figured it was mostly a psychological reaction and tried not be frustrated. I was looking forward to getting the all-clear so we could proceed with an unencumbered love life. No more condoms, lots more spontaneity. But it never happened.
By mid-January I was so frustrated with weak erections that I scheduled a consultation with the urologist for ED and possible prostatitis. By this point I was sure he had snipped the wrong tubes, cauterized a few too many veins, or caused an infection. But as time passed, a worse problem was that I could feel my prostate most days. It felt warm and sometimes uncomfortable. I had never been able to identify where it was before, but at this point I felt like I was sitting with a hot walnut in the middle of my pelvic region.
The urologist and I talked first about ED and the possibility of prostatitis (a general and vague term for any inflammation or infection of the prostate). His diagnosis checklist included a PSA test and some other blood tests to determine if there was an infection. But when I told him about the glowing prostate sensation, he decided to do a DRE, almost as an afterthought. He wasn't happy about it. The size is OK, he said, but on the left side the texture is odd -- it feels flat and a little harder than the rest of the prostate. So he insisted that I needed a PSA test before prescribing an antibiotic or anything else. Just to rule out something more serious than inflammation.
The PSA was 3.7 this time, a significant rise in seven months. Dr. A left a phone message at my home that he wanted a biopsy. I had heard enough about them to know it would not be pleasant, so I called back and tried to talk him out of it. He just wanted to rule out cancer, he said, even though he didn't think it was likely. Then we could move on to treating the inflammation. I put off the biopsy for another week because of some work commitments, but finally submitted to it on February 21.
In retrospect, it's a good thing Dr. A insisted on the biopsy, but at the time I was annoyed before and furious after. Some urologists can make it a little less than horrendous, but he turned into a cold, indifferent jerk (OK, maybe my perception is a little colored by the experience). "This will be uncomfortable" he said as I lay on my side, knees drawn up toward my chest, butt exposed. "Excruciatingly painful" is what he should have said. He pushed in a rectal ultrasound with one quick motion and I almost passed out. I groaned loudly and tried to breathe through the pain, which was more intense than anything I imagined. Then I endured 10 clicks of what sounded like a staple gun, each time piercing my prostate with a needle. The actual needle pokes weren't too bad, except for two that seemed to hit a nerve and shot pain down along my urethra. Those ones HURT. In all, it was about 15 minutes of blunt, undignified pain. And then they sent me home with reassurances that I might see a little blood in my urine and semen for a few days.
For a day I peed pink and had no interest in finding out about the semen. I was taking the antibiotic Cipro and slowly the discomfort subsided. When I finally did feel up to sex a few days later, there wasn't just a little blood in the semen -- the semen was blood. Bright red, lots of blood. That was scary, and over the next week or two the blood went from red to brown, but it was still blood. When I could ejaculate, that is. I was still having a very mixed experience trying to maintain an erection.
But it didn't really matter because Dr. A dropped the big bomb on Friday, February 23. He called me at work mid-afternoon. The results were back, and he was sorry to tell me that two of the ten samples contained cancer. He told me to bring my wife and meet with him the following Monday at noon. "You won't hear anything else I tell you now anyway, so let's talk about it Monday" he said matter-of-factly. And that was the end of the call.
So I sat stunned in my cubicle, trying to wrap my mind around the biggest shock of my life. The doctor had called my wife at home first, with the same concise news, so she called me immediately and we were stunned together. I didn't know what to do. I e-mailed my manager, said I had just been told I had prostate cancer and would be going home early. I walked out to my car without speaking to anyone, and drove home in a daze.
And I passed the weekend in plain, raw panic. In December, all I wanted was to stop using birth control to free up our sex life. In February, all I wanted was to wake up from a horrible dream: I had cancer.
*DRE: the digital rectal exam is the widely despised part of a physical exam in which the doctor puts on rubber gloves, lubes up a finger, and pokes into the patient’s rectum to feel the prostate. If your doctor is like the one I had for 15 years, he’ll try to lighten the mood by saying something dumb like “OK, bend over and crack a smile.” This is a standard screening method to determine if a prostate is cancerous or enlarged. If a lump or irregularity is found, a PSA test will likely be ordered. If the PSA is elevated, a biopsy is generally the next step.
**PSA: prostate-specific antigen, a substance secreted by cells in the prostate that makes its way into the blood in minute quantities (it’s measured in nanograms per milliliter – that’s billionths of a gram in a big drop of blood). This test has become the standard for detecting prostate cancer. PSA can be elevated due to inflammation of the prostate as well as cancer, however, which leads to frustration when biopsies are cancer-negative. An inflamed prostate produces more PSA; cancer cells produce more PSA than healthy prostate cells. In general, a PSA level above 4 raises eyebrows unless there’s already a history of enlargement and inflammation. Many doctors use an age-based scale, so a man in his 40s is OK with a PSA of 2.0 or less, 3.0 or less for men in their 50s, 4.0 for 60 and older, etc. That’s why my 2.7 test at age 46 was considered acceptable, but a 3.7 six months later was a concern.
It’s hard to find a single, balanced source of information about PSA testing. Although it’s dry, try the American Cancer Society site for starters. There are a number of web sites that will try to convince you that PSA testing is pointless, that the numbers aren’t reliable, that you should never get a biopsy based on a PSA test, and so on. I’ve even had a man tell me his doctor will never order a PSA test and will only go off a DRE for detection. That may be fine if you have a low-grade tumor that isn’t growing, but I’m relieved that my urologist insisted on a PSA test and biopsy. My tumor was very aggressive and waiting a year or two could have allowed it to spread or even metastasize.
Sunday, February 24, 2008
The Arrogance of Health
I always thought I'd live into my 70s and die from a neurological disease. The only serious illnesses in my recent family history have been ALS (Lou Gehrig's disease) and Parkinson's. The only cancer I thought I was at risk for would be skin cancer, due to my Scandinavian heritage. Any other cancer has just not figured into my life plans. I've known only a few people who had cancer, and like the average person I tended to withdraw when the subject came up -- too scary, too uncomfortable. I didn't know how to react or what to say.
A friend spent about six months in treatment for colon cancer when we were both in our 30s. He pulled through a very difficult series of operations and chemo, but I mostly ignored the situation. I visited him once in the hospital after part of his colon was removed. We never discussed his treatment in depth, let alone his feelings about the experience. I never really asked how I could help
My wife has a good friend from college who was gradually crippled from a rare form of ALS. She lost the muscle tone and then nerves in her appendages over a nearly ten-year period. An artist, she was reduced in the end to creating images on a computer by placing her inert hand on the mouse and shuffling her upper body around to move it so she could draw. She is the first person I'd known in my life who talked about her impending death, how it affected her, and what she wanted from others. Again, it was a very uncomfortable situation that I did not know how to react to in a meaningful way.
To borrow a phrase, I have been guilty of the arrogance of health* for most of my life. I was unable to empathize with others who had serious illnesses, except in superficial ways. I put out of my mind any thoughts about what it would be like to be in their position, and unconsciously prayed my gratitude that it wasn't me in the hospital bed. The healthy do not, as a rule, project their thinking into the situation of the critically ill. It may be a basic rule of survival -- don't think about illness, focus on health and happiness. But it is also a kind of arrogance because we assume that we'll stay healthy if we want to.
The few health problems I've had have generally been easy to understand. I could blame myself for being overweight if I ate too much and exercised too little. I could blame my Scandinavian ancestry for depression and blame my family for mono -- most of my siblings have had it. I could blame the mono and resulting fatigue for ongoing depression as well. There was always, it seemed, an explanation. But there's no reason I should have prostate cancer -- no family history, I eat well, exercise moderately, and have generally been healthy.
My diagnosis was a personal affront. I was healthy! I hadn't done anything to deserve this. I wanted to look for reasons, but there really are no reasons for most cancers unless you want to believe that God is out to get you. Or if you want to get really crazy, start believing that you deserved it because of personal weakness or some character fault. Or for extra credit, try buying into the alkaline diet theory. Once my friends and family heard about my diagnosis, all these theories and more came out of the woodwork. I was obviously holding on to too much anger, or ate too much animal protein, or had a vitamin D or selenium deficiency, or subconsciously I wanted this to happen. If you follow any of those theories for very long, you start to lose it. The truth is, cancer just happens. You can’t give it to yourself, and you can’t will it to go away. But people like those theories because it helps them believe that it’s possible to have control over something as out-of-control as cancer.
When you're healthy, you have respect for cancer patients. You admire them for their courage. You encourage them. You tell them they're doing great and you know they'll pull through it. You tell them to fight it. And you silently pray your thanks that it's not you. But only very, very rarely do you enter their world and try to understand what their experience is like. That's the arrogance of health.
*I first read this phrase in Marvin A. McMickle's book Battling Prostate Cancer: Getting from "Why Me" to "What Next" (Judson Press, 2004). The phrase has been used by others, judging from a quick Google search. I recommend this book, written by a pastor who offers some fine spiritual insights and some basic information about PCa.
A friend spent about six months in treatment for colon cancer when we were both in our 30s. He pulled through a very difficult series of operations and chemo, but I mostly ignored the situation. I visited him once in the hospital after part of his colon was removed. We never discussed his treatment in depth, let alone his feelings about the experience. I never really asked how I could help
My wife has a good friend from college who was gradually crippled from a rare form of ALS. She lost the muscle tone and then nerves in her appendages over a nearly ten-year period. An artist, she was reduced in the end to creating images on a computer by placing her inert hand on the mouse and shuffling her upper body around to move it so she could draw. She is the first person I'd known in my life who talked about her impending death, how it affected her, and what she wanted from others. Again, it was a very uncomfortable situation that I did not know how to react to in a meaningful way.
To borrow a phrase, I have been guilty of the arrogance of health* for most of my life. I was unable to empathize with others who had serious illnesses, except in superficial ways. I put out of my mind any thoughts about what it would be like to be in their position, and unconsciously prayed my gratitude that it wasn't me in the hospital bed. The healthy do not, as a rule, project their thinking into the situation of the critically ill. It may be a basic rule of survival -- don't think about illness, focus on health and happiness. But it is also a kind of arrogance because we assume that we'll stay healthy if we want to.
The few health problems I've had have generally been easy to understand. I could blame myself for being overweight if I ate too much and exercised too little. I could blame my Scandinavian ancestry for depression and blame my family for mono -- most of my siblings have had it. I could blame the mono and resulting fatigue for ongoing depression as well. There was always, it seemed, an explanation. But there's no reason I should have prostate cancer -- no family history, I eat well, exercise moderately, and have generally been healthy.
My diagnosis was a personal affront. I was healthy! I hadn't done anything to deserve this. I wanted to look for reasons, but there really are no reasons for most cancers unless you want to believe that God is out to get you. Or if you want to get really crazy, start believing that you deserved it because of personal weakness or some character fault. Or for extra credit, try buying into the alkaline diet theory. Once my friends and family heard about my diagnosis, all these theories and more came out of the woodwork. I was obviously holding on to too much anger, or ate too much animal protein, or had a vitamin D or selenium deficiency, or subconsciously I wanted this to happen. If you follow any of those theories for very long, you start to lose it. The truth is, cancer just happens. You can’t give it to yourself, and you can’t will it to go away. But people like those theories because it helps them believe that it’s possible to have control over something as out-of-control as cancer.
When you're healthy, you have respect for cancer patients. You admire them for their courage. You encourage them. You tell them they're doing great and you know they'll pull through it. You tell them to fight it. And you silently pray your thanks that it's not you. But only very, very rarely do you enter their world and try to understand what their experience is like. That's the arrogance of health.
*I first read this phrase in Marvin A. McMickle's book Battling Prostate Cancer: Getting from "Why Me" to "What Next" (Judson Press, 2004). The phrase has been used by others, judging from a quick Google search. I recommend this book, written by a pastor who offers some fine spiritual insights and some basic information about PCa.
Saturday, February 23, 2008
When the Bomb Goes Off
One year ago today, I got the call from my urologist telling me that my prostate biopsy was positive for cancer. Looking back, I'm amazed at how completely my life was turned upside down and permanently changed. Prostate cancer is the second most common cancer in American men, and yet I knew almost nothing about it at the time. In those first days that seemed like weeks, I faced a future of treatment decisions, the agony of waiting for test results, and the pain of figuring out what to do with my life now that cancer is in the picture. That's what this blog will revolve around: my experience in living through this disease. I’ll also include general information about getting diagnosed and choosing between the different treatments available, but mostly it’s a personal look at how it feels to have the ol' prostate bomb explode on you way too early in life.
There are some web sites, email groups, and a few blogs with prostate cancer support and information. Over 220,000 men in the United States alone are diagnosed every year, but there is a surprising lack of public awareness about the disease. Most men are in their mid-50s, 60s, or 70s when diagnosed. I was 47 when it happened to me. One in six men can plan on being diagnosed with prostate cancer at some point in their lives. Fortunately, only a relatively small number die from it – fewer than 30,000 men a year in the United States. Treatments are generally quite effective, especially when the disease is caught early, and they give men enough time to live with a decent quality of life and die of other causes.
In this blog I’ll write about the experience of being diagnosed and all the ups and downs I went through and am still going through. I hope this story will be useful to other men, especially to those with an aggressive form of prostate cancer. The majority of men with this cancer get treated and can more or less walk away with little or no risk. If you go 5 years with "undetectable" test results, most doctors will tell you you're home free. I am not expecting to hear that any time soon: my aggressive form of the cancer (Gleason score 9*) puts me in a much less favorable category, and my odds for staying "undetectable" are lower.
So what can you do? Get educated, find the best medical team available, and start learning to live with uncertainty. Prostate cancer is usually slow-growing, and if diagnosed early, you have time to make treatment decisions without rushing in to anything. You’ll get through it. Life will be different, but in time you’ll learn to accept and embrace the changes. And possibly the most important thing is to learn to speak the language of hope as you go through the experience. Hope is everything as you deal with cancer. Don’t let anyone take that away from you.
*Gleason score: the rating system, from 2-10, of how aggressive prostate cancer cells are. Gleason 8, 9, and 10 are considered very aggressive, with 6 and 7 considered moderate. Here's one article explaining the intricacies of this score.
There are some web sites, email groups, and a few blogs with prostate cancer support and information. Over 220,000 men in the United States alone are diagnosed every year, but there is a surprising lack of public awareness about the disease. Most men are in their mid-50s, 60s, or 70s when diagnosed. I was 47 when it happened to me. One in six men can plan on being diagnosed with prostate cancer at some point in their lives. Fortunately, only a relatively small number die from it – fewer than 30,000 men a year in the United States. Treatments are generally quite effective, especially when the disease is caught early, and they give men enough time to live with a decent quality of life and die of other causes.
In this blog I’ll write about the experience of being diagnosed and all the ups and downs I went through and am still going through. I hope this story will be useful to other men, especially to those with an aggressive form of prostate cancer. The majority of men with this cancer get treated and can more or less walk away with little or no risk. If you go 5 years with "undetectable" test results, most doctors will tell you you're home free. I am not expecting to hear that any time soon: my aggressive form of the cancer (Gleason score 9*) puts me in a much less favorable category, and my odds for staying "undetectable" are lower.
So what can you do? Get educated, find the best medical team available, and start learning to live with uncertainty. Prostate cancer is usually slow-growing, and if diagnosed early, you have time to make treatment decisions without rushing in to anything. You’ll get through it. Life will be different, but in time you’ll learn to accept and embrace the changes. And possibly the most important thing is to learn to speak the language of hope as you go through the experience. Hope is everything as you deal with cancer. Don’t let anyone take that away from you.
*Gleason score: the rating system, from 2-10, of how aggressive prostate cancer cells are. Gleason 8, 9, and 10 are considered very aggressive, with 6 and 7 considered moderate. Here's one article explaining the intricacies of this score.
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