My Dad died of prostate cancer. He was diagnosed in 1984, and my mother tells me that she believes he had symptoms for a long time. She noticed abnormal behavior in his bathroom habits and “busted” him, ordering him to go to the doctor, something he hated to do. He was scheduled for surgery shortly after his diagnosis, and had a radical prostatectomy. They removed some lymph nodes, and while none were malignant, some had “irregular” cells. We thought for a long time that the doctors erred in not recommending radiation right after surgery, but I recently learned that was counter-indicated, as the cancer was almost certainly metastasized to the point where that would not have helped. The surgery, which was primitive compared to today’s methods, left him with brutal side effects. He was able to overcome incontinence, but had other problems and discomfort for the rest of his life.
About two years after the surgery, a lump appeared on his neck. By that time, the cancer was metastasized throughout his body, including in his bones. From that point on, the object of treatment was to slow down the progress. He had a great deal of radiation and eventually was castrated. Chemotherapy is not used in prostate cancer until all other options have been tried. Dad never had chemo. Because he was a strong athletic person, and in great health otherwise, Dad stayed pretty active until autumn 1988, when he had to become pretty inactive. He became bedridden in January, 1989, and died March 10, only ten days after his 65th birthday.
When Dad got sick, he and Mom just did whatever the doctors told them. They did not research the disease, consult with other doctors, seek out second opinions, or do anything other than obey their family doctor and those he referred blindly. One year after Dad died, my 17 year old son was diagnosed with testicular cancer. I was terrified. But as is my way, I didn’t really trust anyone but me. This was before the internet, but I asked our pediatrician to get all the medical studies and literature on the disease that he could obtain. He presented me with a two inch stack of papers, but warned me that it was all very technical and not geared to the layperson. I bought a medical dictionary and read every word, asking the doctor questions when I got stuck. When we consulted with a second doctor in Missoula, he told me that I knew about what he did about the disease. That way, I was sure that the treatment my son received was the best and proper thing to do.
SO HERE’S MY FIRST BIT OF ADVICE: Research, research, research. If you are diagnosed, either learn all you can possibly know about it, or have a loved one do it for you. It’s not that I don’t trust the doctors, but how can I talk about the disease with them and make good decisions if I don’t know enough about it?
Because of my dad’s experience, and the fact that his father (my grandfather) and brother (my uncle) had prostate cancer, I always took it seriously. The PSA test came out in 1986, two years after Dad’s initial surgery. It’s normally not recommended for men under 50, but I insisted on it when I was in my early 40s. “Normal” PSA is below 5 (some say below 4) and mine usually ranged from 1.2 to 3.2.
I had my regular annual physical in November, 2008. As usual, the “digital” exam showed nothing abnormal, I had no prostate symptoms, and my biggest concern was a deteriorating hip which was injured in an accident in 1993. When I went in for the results of my physical, the doctor told me that my PSA was 6.1. I truly did not see that coming.
My doctor told me that ordinarily he would recommend waiting a short time, maybe three months, and checking the PSA again to eliminate the possibility of a false positive. Prostate cancer is a slow growing disease, and you do have time for that when no other indications besides the PSA are present. Due to my big jump in PSA numbers and my family history, he recommended that I go to a urologist right away. I made an appointment and had the initial visit. The urologist found nothing amiss other than the PSA, but again, due to the big jump and my family history, she thought I should have a biopsy. She was pretty upfront about telling me that the cause for the jump in PSA number almost had to be cancer.
I went in for my biopsy just before Christmas, 2008. A prostate biopsy is not a pleasant experience, although it’s not the worst thing I’ve ever been through, either. You go into the urologist’s office. They put you in a hospital gown and have you lay down on an examination table on your left side. The urologist inserts an ultrasound device that’s about the size of a roll of nickels in your rectum. With this device, the doctor can see what she’s doing from the ultrasound image. Using long thin springloaded devices which are placed in your rectum through the ultrasound device, the doctor first injects you with a local anesthetic, then uses tiny hollow needles to extract tissue samples from the prostate through the rectal wall. You can feel it, and it hurts, but it is bearable. It’s certainly nothing to look forward to, nor is it something to be afraid of. It’s probably no worse than a dental experience, although on the other end.
Just a few days after New Year’s, 2009, I received a phone call from the urologist. She told me that I had prostate cancer. It’s a pretty unique experience, being told you have cancer. I guess I was probably like most people, and when I imagined that happening, I was afraid of it. Surprisingly, it wasn’t as devastating as I imagined when it actually happened. I just thought that it was time to get to work and do what needed to be done. My first call was to 800-4 CANCER. I don’t know if that service is available in Canada, but for Americans at least, it’s invaluable. One phone call resulted in a long conversation with a knowledgeable and sympathetic person and I received, within a few days, a large box of information about my cancer, treatments, side effects, etc. etc. The internet was also a valuable resource, but there’s a lot of misinformation on the internet too, and the printed info I got helped direct my research.
I had my office visit with the urologist. My wife accompanied me. The doctor explained the details of the biopsy. Here’s where things get a bit technical. Prostate cancer comes in a variety of degrees of aggressiveness. The very least aggressive cancers, if they appear in someone old enough, are probably best untreated. This option is called “watchful waiting.” One in six American men get prostate cancer (one in seven Canadians, go figure.) Of those, one in 34 die of the disease. Many men get prostate cancer, go untreated, and still die of something else before the cancer progresses enough to kill them. That being said, prostate cancer is the second most deadly cancer for men behind lung cancer. This is why it’s so important to know all you can about your particular cancer.
When the pathologist looks at the biopsy slide, he first determines if any cancer cells are present, then looks at the cells to evaluate their aggressiveness. If the cells are well-differentiated, it means they are less aggressive. The most aggressive cells kind of run together, and the individual cells cannot be differentiated from each other very well. Based on this degree of differentiation, the pathologist gives the cells a numerical ranking of between 1 and 5, 1 being the least aggressive, 5 being the most. These are called “histologic grades.” Because the cancer may be comprised of cells of differing grades, the pathologist gives numbers to the two most predominant grades. These two numbers added together become the Gleason Score, the most significant number relating to your cancer.
For example, if the two predominant cell grades are ranked 2 and 3, your Gleason score would be 5. Generally speaking, low score cancers have a Gleason score of 2, 3, or 4; intermediate would be 5, 6, or 7; high would be 8, 9, or 10. Remember, this relates to the aggressiveness of the cancer cells, or how fast they can be expected to grow. These scores are differentiated further, though, by the sequence of the numbers. The first of the two numbers that comprise the Gleason score relates to the most dominant cells, the second to the second most dominant. Therefore, a Gleason score that is a 2, 3 Five is slightly less aggressive than one that is a 3,2 Five. Get it?
The next thing that doctors determine is whether the cancer is confined to the prostate, and if not, to what extent it has spread. This is called staging, and is too complex to go into here, but I highly recommend learning about staging enough to understand what the doctor means when he/she is giving you information regarding the stage. This is done by a variety of procedures, depending on the individual case. It might be a simple blood test, or might involve CT scans and/or bone scans. Anecdotally, I notice that Canadian doctors seem to be more apt to use CT scans and bone scans. I was never offered one, and it was never suggested. I don’t know if that is because it wasn’t necessary, or because American health care is not as good.
My Gleason score was a 3, 4 Seven. This meant that it was at the high end of intermediate. The doctor determined that my cancer was confined to the prostate. I was told that I could “watchfully wait” but it was not recommended due to my Gleason score and my family history. Instead, they basically gave me a choice of three options: 1. surgery to remove the prostate, 2. 5 weeks of “beam” radiation followed by implantation of radioactive “seeds” known as brachytherapy, or 3. 9 weeks of beam radiation. I live in Kalispell, Montana, and while the Kalispell medical community is not known for its excellence, they do have an IMRT radiation machine here. IMRT is Intensity Modulated Radiation Therapy. The older type of radiation is called External Beam Radiation Therapy (EBRT.) With IMRT, the machine is guided by a computer and extremely focused radiation beams are directed to tiny gold “targets” implanted in the prostate and ultimately, to the cancer cells. Because it is so much more precise, a great deal more radiation is delivered to the cancer without affecting the surrounding cells and tissue. A level of radiation is possible then, that was not possible with EBRT without causing serious side effects. Because IMRT is pretty new, they don’t have enough data to provide good survival rate statistics, but common sense and results so far indicate that it is pretty danged successful.
The big problem is that not every radiation center has IMRT. Since you have to have a treatment every weekday for weeks, most people have to go to the center nearest their residence. I was lucky that Kalispell has one.
My next step was to have an appointment with the radiation oncologist. He confirmed everything I’d been told so far, and also concurred with the urologist’s recommended treatments. Problem was, I didn’t like him much. When I asked questions, my questions were pretty technical, as I’d done a lot of research. He seemed irritated by my questions, and indicated that he’d never had a patient who even knew about some of the subjects of my questions.
I rejected the idea of surgery right away. Although I knew that procedures had improved a lot since my Dad’s surgery, I still knew that serious, life changing side effects would come with surgery, and I just didn’t think it was necessary. I’m told that some people can’t stand the idea of the cancer cells remaining in their body, and want the surgery just to be sure it’s gone. I didn’t care about that. I just wanted to be cured. Remember, I had no symptoms, only the test results. Going into this, I realized that I felt just fine, but I was about to undergo treatment that was sure to GIVE me symptoms.
I decided to go to Missoula to the St. Patrick Cancer Center for a second opinion. I met with Dr. Margie Menendez, a radiation oncologist on February 6. She examined me and reviewed the file thoroughly. I spent about two hours with her discussing everything in detail. It’s a good idea to have someone with you at these visits. A spouse or someone else close to you can provide a second set of ears so that you don’t miss anything that might be important. Also, sometimes they can think of questions you haven’t thought of. My wife went to my appointments in Kalispell with me, but she couldn’t go to Missoula, so I had my son go with me (remember he’s a cancer survivor, and he was 37, old enough to serve in that role.)
Dr. Menendez was pretty blunt. She said that because of the big jump in PSA, my family history, and my Gleason score, she thought that the combination IMRT and brachytherapy was a bit of a risk. She flat-out recommended 9 weeks of IMRT. That seemed quite logical to me, and I appreciated her directness, so that was my decision.
Back in Kalispell, I had the gold “target” seeds implanted by the urologist in a procedure that’s much like the biopsy, except it hurts more. I began the radiation therapy on March 16. I went in on the 13th for the preliminary setup, and had the first radiation the 16th. I went every week day, except one when the machine was being serviced, until I completed 47 treatments on May 20. Each day, I’d go in a few minutes early, change into a gown and wait for the technicians to come get me. They’d have me lay down on a table, put my feet in a plastic mold and line up laser lights with a couple of small dots they tattooed on me during setup. Then they’d leave the room, shut the huge thick vault-like door and the machine would do its thing. I received radiation in six locations on a line that went roughly from one hip bone to the other, each one about thirty seconds. Then I’d get dressed and go home. Once a week, on Monday, the nurse would weigh me and take my blood pressure, then the doctor would come in and ask me how I was doing, and make a couple of notes on the file. After it was all done, I was somewhat surprised to learn that for seeing me for an hour the first time, for about a half hour the last time, and about 8 of those two to three minute sessions, the doctor billed me ten thousand dollars. (This was separate from the one hundred thousand dollars I was charged for the treatments.) The doctor was never present for any of the treatments. Clearly, I’m in the wrong business.
They gave me a list of possible side effects when I started. They were careful to note that not everyone gets all the side effects (or any of them) and if you do get them, they differ in intensity between individuals. The most common side effects are (in order of likelihood) fatigue, urinary problems (usually difficulty in urinating or frequency/urgency and possible incontinence) or bowel problems (usually diarrhea-like “loose” stool.) I was pretty lucky. I had no bowel problems at all. I had a little frequency/urgency problem for a few weeks, but was given Flomax which took care of it. But fatigue! Wow. I honestly didn’t know you could get that tired.
I was already having trouble with fatigue. My hip was hurting so much that I had to be on serious narcotics for pain (Oxycontin) and I couldn’t sleep in a bed, as it hurt too much. I was sleeping in my recliner, and virtually never got a good night’s sleep. But this was more than that. I was so tired it felt like I couldn’t hold my head on my neck. Still, I managed to go to work almost every day. I’m a lawyer and work for myself, so I could set my own schedule. Also, the recession knocked the slats out of my practice, so I had less work to do. Still, I was there most days for several hours. The fatigue hit me about two weeks into the radiation, but was gone about ten days after I finished. The urinary problems went away and I didn’t have to continue the Flomax.
The doctor told me that the radiation kills the DNA in the cancer, not the cells themselves, so they don’t actually die until they attempt to divide and grow. Since prostate cancer is so slow growing, this process doesn’t happen for some time after treatment. He recommended that I wait 9 months for a follow up test.
Because I liked Dr. Menendez in Missoula so much, I asked her if she would monitor my post-treatment exams. I would have gone to her for treatment, but I couldn’t very well travel 120 miles every day for nine weeks. She agreed, and I finally had my first checkup March 12, 2010. She did a digital exam and said that was fine, then had blood taken for a PSA. She explained to me that the usual result was a seriously reduced PSA which would then be less each six month test until it ended up near zero. She expected mine to be around 2.0 give or take. On Sunday the 14th, she happened to be in her office and saw my PSA results. She was so happy she phoned me that day. It was 0,24.
So this is the end of my story. I’m for all intents and purposes cancer-free. I have to have checkups each 6 months for two years, then annually after that. But it looks like I’ve dodged the BIG C bullet, at least for now. I hope anyone reading this avoids the cancer experience. I really don’t recommend it. But if you should get bad news, here’s my offer. I’ll always be glad to provide whatever guidance and moral support I can. Just contact the webmaster of this site, who will be able to provide contact information for me. In the end, the moral of the story, boys, is to get your exam every year, pay attention to the results, and if you get bad news, learn, learn, learn. You have to make good decisions and you can’t do that without knowing all you can. Knowledge is power.