Hello, from beautiful Southeast Alaska,
We are coming close to the end of this phase of our blog journey. This post is a prequel, dedicated to answering the frequently asked questions, "How did you discover you had prostate cancer?" and "How did you go about getting treatment?"
This is another very personal post, and I am writing it primarily because there is so much information I wish I had known about the disease or taken much more seriously earlier on. It was not that the information wasn't available, it is just that for much of the last three years every time I researched a symptom, I determined, at least in my mind, that it represented a less serious alternative. Is that a form of denial? The post is quite lengthy and detailed, because I want to chronicle the early part of the journey for myself. This was where I was most ignorant and stubborn and stumbled a number of times before diagnosis and finally the road toward cure.
This is very serious stuff. The statistics on prostate cancer are sobering, and, frankly, quite scary. According to the U.S. National Institutes of Health, "It is estimated that 241,740 men will be diagnosed with and 28,170 men will die of cancer of the prostate in the U.S. during 2012". With baby-boomers just beginning to enter the most vulnerable age group, the total number of cases diagnosed will almost surely increase. Hopefully, with early detection and better treatment methods, the latter number will go down. Regardless, the current odds are that about 1 in 6 men will be diagnosed with the disease during their lifetime. If reading this helps just one person to avoid any of my mistakes and to obtain necessary treatment sooner, it is well worth it.
First a brief update on my health. I am feeling stronger each day and set-backs are much less frequent. Another plus is that I am way less tired and can get through most days without a nap. I really think our healthier diet is helping my energy level. We are trying to exercise every day and stay on our anti-cancer diet as much as possible. Participating in and completing the Circle of Life walk, honoring Mike Wittstock, last Saturday felt like a real triumph. Seeing so many familiar faces and catching up with old friends was cathartic, in the emotional sense not in the medical sense, thank goodness.
Although we did not know it at the time, our journey with cancer started with a routine prostate specific antigen (PSA) test in April 2009. (If you don't know about PSA, I hope you are either a man under age 40 or a woman.) My PSA level was 5.2 ng/ml, up from 4.2 ng/ml at the health fair the previous spring. The normal range for a man my age should have been 0-4.5 ng/ml. A three-week course of Cipro knocked the level back down to 3.8 ng/ml, and my local physician diagnosed the problem as a mild case of prostatitis, an infection of the prostate. We were both convinced that we had it beat. However, the 2010 April health fair PSA reading was 7.41 ng/ml! Something was going on! Now, there are a number of reasons that the PSA level might increase that quickly, and cancer is just one of them, so my physician and I set about trying to determine the cause. A digital exam determined that the prostate was somewhat enlarged and I told him that I occasionally felt some discomfort and sometimes had difficulty with urination, both symptoms of benign prostatic hyperplasia (BPH). We decided to retest in a few weeks to see if the high level was an anomaly. By June, the PSA level was back down to 6.32 ng/ml and dropped even further to 6.12 ng/ml by December. We decided to wait to do a follow-up PSA and digital exam in about six months. What I now know is that, while an elevated PSA level and a rapid increase in PSA do not necessarily mean you have cancer, they do signal prostate problems which should be evaluated by a specialist. In fact, my local physician advised me to make an appointment with a urologist, which I never did. Just too darn inconvenient from here, I guess.
This is another very personal post, and I am writing it primarily because there is so much information I wish I had known about the disease or taken much more seriously earlier on. It was not that the information wasn't available, it is just that for much of the last three years every time I researched a symptom, I determined, at least in my mind, that it represented a less serious alternative. Is that a form of denial? The post is quite lengthy and detailed, because I want to chronicle the early part of the journey for myself. This was where I was most ignorant and stubborn and stumbled a number of times before diagnosis and finally the road toward cure.
This is very serious stuff. The statistics on prostate cancer are sobering, and, frankly, quite scary. According to the U.S. National Institutes of Health, "It is estimated that 241,740 men will be diagnosed with and 28,170 men will die of cancer of the prostate in the U.S. during 2012". With baby-boomers just beginning to enter the most vulnerable age group, the total number of cases diagnosed will almost surely increase. Hopefully, with early detection and better treatment methods, the latter number will go down. Regardless, the current odds are that about 1 in 6 men will be diagnosed with the disease during their lifetime. If reading this helps just one person to avoid any of my mistakes and to obtain necessary treatment sooner, it is well worth it.
First a brief update on my health. I am feeling stronger each day and set-backs are much less frequent. Another plus is that I am way less tired and can get through most days without a nap. I really think our healthier diet is helping my energy level. We are trying to exercise every day and stay on our anti-cancer diet as much as possible. Participating in and completing the Circle of Life walk, honoring Mike Wittstock, last Saturday felt like a real triumph. Seeing so many familiar faces and catching up with old friends was cathartic, in the emotional sense not in the medical sense, thank goodness.
Although we did not know it at the time, our journey with cancer started with a routine prostate specific antigen (PSA) test in April 2009. (If you don't know about PSA, I hope you are either a man under age 40 or a woman.) My PSA level was 5.2 ng/ml, up from 4.2 ng/ml at the health fair the previous spring. The normal range for a man my age should have been 0-4.5 ng/ml. A three-week course of Cipro knocked the level back down to 3.8 ng/ml, and my local physician diagnosed the problem as a mild case of prostatitis, an infection of the prostate. We were both convinced that we had it beat. However, the 2010 April health fair PSA reading was 7.41 ng/ml! Something was going on! Now, there are a number of reasons that the PSA level might increase that quickly, and cancer is just one of them, so my physician and I set about trying to determine the cause. A digital exam determined that the prostate was somewhat enlarged and I told him that I occasionally felt some discomfort and sometimes had difficulty with urination, both symptoms of benign prostatic hyperplasia (BPH). We decided to retest in a few weeks to see if the high level was an anomaly. By June, the PSA level was back down to 6.32 ng/ml and dropped even further to 6.12 ng/ml by December. We decided to wait to do a follow-up PSA and digital exam in about six months. What I now know is that, while an elevated PSA level and a rapid increase in PSA do not necessarily mean you have cancer, they do signal prostate problems which should be evaluated by a specialist. In fact, my local physician advised me to make an appointment with a urologist, which I never did. Just too darn inconvenient from here, I guess.
By
the late winter and spring of 2011, both pressure and some pain were near-constant companions.
But, I was beginning the charter season and couldn't be bothered with
another distraction. I decided to live with it until the end of the
season, promising myself that I would have it checked out when we went south in the fall. I went in for another PSA test and a consultation with my physician in June, 2011. He ordered a
free PSA test along with the total PSA test. A what?? I had never heard of a free PSA
test. This test is most appropriate for men with a total PSA between 4.1 and 10.0 ng/ml, the exact range I was in. Apparently most of the PSA in the
bloodstream is bound to proteins in the blood, while some remains
"free". A "normal" free PSA reading
should be about 0.25 of total PSA. If your total PSA level is high and the percentage of free PSA is also high, the increase is most likely the result of BPH. A higher than normal PSA along with a low percentage of free PSA can indicate a
higher probability of cancer. My free PSA reading was only 0.10 of total
PSA, which was by then back up to 6.8 ng/ml. This level
indicated a 56% chance of cancer. Whoops! Way past time to
contact a urologist! My physician told me there would be a urologist
visiting from Juneau in November and I could schedule a biopsy then. Kathy and I decided not to wait that
long, and talked to our daughter and son-in-law who are both in the healthcare profession in the Portland area for recommendations. Based on their resources' advice, we made an appointment with a well-known and trusted urologist, Dr. Janoff, with Urologic Consultants, in
Portland, for late September. After an initial exam and consultation we
scheduled a biopsy for October 3.
We were in the USS Constitution Museum in Boston on October 10, when I got a call from Dr. Janoff himself. It was a classic good news/bad news report. The good news was that only two out of 12 biopsy cores were positive for cancer. The bad news was that the two which were positive showed a very advanced stage of the disease. We were told that we could continue on with our fall trip through the Canadian Maritimes, but to make an appointment to see him as soon as we got back to Oregon in early November, which, of course, we did. He also said that he had reviewed my medical history and the ultrasound images taken during the biopsy. Based on that information, he ruled out surgery as a treatment option, but told us he would get a second opinion, which he subsequently did. The second, even more-experienced surgeon, came to the same conclusion. Surgery was out.
Detailed tissue and radioactive bone scans to determine if the cancer had spread were conducted as soon as we returned to Oregon. Thankfully, there was no indication of cancer beyond the walls of the prostate. Because surgery was not an option, Dr. Janoff referred me to Dr. Hansen, a highly-respected radiation oncologist at Providence St. Vincent Hospital in West Portland. Jointly, we developed a treatment plan, and I received a hormone blocking injection from Dr. Janoff's staff on November 16. The purpose of the injection was to cut off testosterone to shrink the prostate and starve the tumor until radiation therapy could be started. We returned to Petersburg for the Holidays. In mid-January we flew back down to Oregon to start treatment. As they say, the rest is history and is well-covered in previous blog postings.
Mistakes Made and Lessons Learned:
The U.S. Preventive Services Task Force recently released a report recommending against men getting a PSA test to screen for prostate cancer. I'll have to admit that I was distracted somewhat by early announcements of this report a year ago, particularly when it came to the value and reliability of the PSA test. I asked my urologist about it, and he labeled this position as being somewhere between irresponsible and downright dangerous. There is no doubt that the PSA test, which is most often accompanied by a digital rectal exam, can help detect prostate cancer. In fact, these procedures, in combination, are the only non-invasive methods currently available to determine if a man has prostate cancer (this is of course if one considers a digital rectal exam and a poke in the arm to be non-invasive). The problem is that many of the cancers that get detected are so small and slow-growing, they'll never be harmful, and doctors have a difficult time discerning the quick, harmful cancers from the slow, harmless ones. Only a biopsy can differentiate between them.
The U.S. Preventive Services Task Force recently released a report recommending against men getting a PSA test to screen for prostate cancer. I'll have to admit that I was distracted somewhat by early announcements of this report a year ago, particularly when it came to the value and reliability of the PSA test. I asked my urologist about it, and he labeled this position as being somewhere between irresponsible and downright dangerous. There is no doubt that the PSA test, which is most often accompanied by a digital rectal exam, can help detect prostate cancer. In fact, these procedures, in combination, are the only non-invasive methods currently available to determine if a man has prostate cancer (this is of course if one considers a digital rectal exam and a poke in the arm to be non-invasive). The problem is that many of the cancers that get detected are so small and slow-growing, they'll never be harmful, and doctors have a difficult time discerning the quick, harmful cancers from the slow, harmless ones. Only a biopsy can differentiate between them.
That said, I feel that, based on my experience, any recommendation against getting your PSA level tested is a very big mistake. An elevated PSA level was the first indication that I had a problem, and having that test and the follow-up tests very likely saved my life, as it has saved the lives of many other men. An annual PSA test, along with an annual digital exam, after age 40 is still recommended by nearly all urologists as the best method for early detection of prostate cancer. Much like the combination mammogram and self examination for breast cancer, it is not perfect, but does catch a lot of disease which would otherwise go undetected.
I learned that one shouldn't concentrate on the PSA number itself. Apparently there is no magic number that indicates a safe level. Instead, one should monitor the change, particularly if the PSA level continues to increase over time. This is referred to as velocity PSA and can be an indicator of a developing tumor. The fact that my PSA level varied pretty dramatically for a couple of years was confusing and one of the main reasons we (my physician and I, not Kathy and I) did not act more aggressively sooner. That delay also turned out to be a mistake.
Would earlier diagnosis and treatment have resulted in a better outcome for me? We don't really know and won't know for some time (see previous post). I do believe that at the point the PSA started its dramatic rise, the tumor was just beginning to really take off, and an earlier start on treatment may have required fewer radiation sessions and possibly a better outcome. Earlier treatment would also have relieved me of a year of discomfort, pain, and near constant worry. Bottom line, if there is an indication of a problem, get it checked out, not only for yourself, but for your loved ones.
There are apparently many things which can effect the PSA number on a given day. For example, having a digital exam, sex, or some trauma to that area within two days prior to a PSA test can greatly increase the numbers. Therefore it is important to have the PSA test before a digital exam or wait several days after the digital exam to have it. There are several prescription drugs which can decrease the numbers, so make sure your physician has a complete list of all of your medications and ask him to check for contraindications. If an increase in PSA is indicated, one shouldn't wait too long to have it retested to determine if the first number was an anomaly. This also provides a chance to catch a rapidly developing problem. Perhaps the biggest lesson I learned is that there is an intermediate test, the free PSA test, which can indicate even more accurately the probability of cancer and the need for a biopsy. Be sure to ask your doctor if it is appropriate for your condition.
Would earlier diagnosis and treatment have resulted in a better outcome for me? We don't really know and won't know for some time (see previous post). I do believe that at the point the PSA started its dramatic rise, the tumor was just beginning to really take off, and an earlier start on treatment may have required fewer radiation sessions and possibly a better outcome. Earlier treatment would also have relieved me of a year of discomfort, pain, and near constant worry. Bottom line, if there is an indication of a problem, get it checked out, not only for yourself, but for your loved ones.
There are apparently many things which can effect the PSA number on a given day. For example, having a digital exam, sex, or some trauma to that area within two days prior to a PSA test can greatly increase the numbers. Therefore it is important to have the PSA test before a digital exam or wait several days after the digital exam to have it. There are several prescription drugs which can decrease the numbers, so make sure your physician has a complete list of all of your medications and ask him to check for contraindications. If an increase in PSA is indicated, one shouldn't wait too long to have it retested to determine if the first number was an anomaly. This also provides a chance to catch a rapidly developing problem. Perhaps the biggest lesson I learned is that there is an intermediate test, the free PSA test, which can indicate even more accurately the probability of cancer and the need for a biopsy. Be sure to ask your doctor if it is appropriate for your condition.
The biopsy itself wasn't nearly as bad nor as painful as I expected, and I flew clear across the country, from Portland to Boston, the day after. My fear of having the biopsy turned out to be much greater than the reality. There was some minor pain, but I was well used to that by then. Also, there
was a bit of blood in my urine which lasted about three days. I wish now that I hadn't waited nearly so long to schedule one. Also, if you question the results of your biopsy for any reason, you can request that it be read again by another lab. In fact, some medical institutions require that their own specialists reread the biopsy results before starting a treatment plan.
Keep in mind, one size does NOT fit all. Each person is different, and each cancer is different. If you are diagnosed with prostate cancer, you will have a lot of opportunities to outline a treatment plan that is best for you. The good news is that there are many treatment options and there are increasingly more methods to choose from. Also, successful treatment rates are improving all the time.
A number of years ago when my father was first diagnosed with prostate cancer, his urologist recommended "watchful waiting" as a form of treatment. I have learned through my research that watchful waiting is not treatment and is no longer considered a logical option in this country after cancer has been detected. One very reputable urologist goes so far as to describe watchful waiting as a "death sentence". If your urologist detects cancer and suggests watchful waiting, get a second opinion, quick.
A number of years ago when my father was first diagnosed with prostate cancer, his urologist recommended "watchful waiting" as a form of treatment. I have learned through my research that watchful waiting is not treatment and is no longer considered a logical option in this country after cancer has been detected. One very reputable urologist goes so far as to describe watchful waiting as a "death sentence". If your urologist detects cancer and suggests watchful waiting, get a second opinion, quick.
I found great comfort in being in a familiar area and close to family. That is a big consideration if you need to be away for an extended period of time, as we were. Thank you again, Rob and Susan. Having your beautiful Orenco Station home available to us exactly when we needed it was a godsend.
My few words just touch the tip of the iceberg regarding what is currently known and written about prostate cancer. New information and a better understanding of the disease is becoming available all the time. Face it, as stated earlier in the post, the odds are not in your favor so you might as well get to know what you are up against to become better prepared to deal the disease if or when it effects either you or a family member.
The very best reference that I have found on the specific subject of prostate cancer is Dr. Patrick Walsh's guide to surviving prostate cancer by Patrick C. Walsh, MD, and Janet Farrar Worthington. The copy I have is the second edition. Thank you again for the book, Bridget; it is an invaluable resource, which I plan to share with others. The book is so detailed that it even spells out how you can make a digital rectal exam more comfortable for yourself - something I'd been wanting to know for 25 years. USA Today describes the book as, "The ultimate book on the No 1. men's disease in the world....should be in every man's home." I'll take that a step farther and say, "It should not only be in your home, it should be read from cover to cover."
Please feel free to share any or all of the information contained in this post with friends and family who are entering the time of their life when prostate cancer becomes a concern.
The very best reference that I have found on the specific subject of prostate cancer is Dr. Patrick Walsh's guide to surviving prostate cancer by Patrick C. Walsh, MD, and Janet Farrar Worthington. The copy I have is the second edition. Thank you again for the book, Bridget; it is an invaluable resource, which I plan to share with others. The book is so detailed that it even spells out how you can make a digital rectal exam more comfortable for yourself - something I'd been wanting to know for 25 years. USA Today describes the book as, "The ultimate book on the No 1. men's disease in the world....should be in every man's home." I'll take that a step farther and say, "It should not only be in your home, it should be read from cover to cover."
Please feel free to share any or all of the information contained in this post with friends and family who are entering the time of their life when prostate cancer becomes a concern.
Every day is a blessing!!
Shalom,
Barry and Kathy
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