Healing
We’re closer than ever to being able to diagnose prostate cancer with absolute certainty and distinguish aggressive cancers from non-life-threatening varieties, but for now, the the road is still difficult for those in the early part of the diagnostic process.
This is going to sound odd… but what the heck, anyone who is on a cancer road will agree–the entire experience is odd. Reality, time, perceptions and emotions are all distorted. It’s like living in, not just looking at, a Dali painting. But, if I had to be diagnosed with this cancer, I am glad that my PSA and biopsy numbers were clear cut. From surgery to ADT and to my upcoming weeks of radiation treatments, the stark clarity of my diagnostic data and the reality of “advanced disease” have made accepting my treatments easier. No lingering regrets here.
However, men who are in the early warning and diagnostic stages face a different set of anxieties, all sparked by our common enemy–the “C” word.
I had just received several emails from readers who suggested that I write some entries about earlier stage experience, when another reader, John M. contacted me. I believe there are no coincidences in life, so I am sharing John’s experience below. He is currently undergoing watchful waiting for prostate cancer. It’s what John calls his Bethesda Moment.
John M. wrote:
I want to write this to give another perspective on what men can and should do when their PSA scores wobble around. I don’t want people to be afraid – or not to take their bodies seriously. I am a 66-year-old man who has been retired from a position in the federal government for 5 years. I live in Bethesda, Maryland. For years, I have tried to “give back” to those people who have helped me in the past. I try to “pay it forward.”
I did this for many years by being a patient in various clinical trials, trying new drugs, and submitting to new procedures. One of the trials I undertook (the SELECT study) was for lung cancer incidence (John has not had lung cancer), and it involved taking a pill (or placebo) for 7 years. All along the way, multiple tests we done on me, including PSA blood levels. Each year they also examined my prostate, noting that it was gradually enlarging.
Monday, July 12, 2010: I went to see my Endocrinologist, as I do every 6 months. As part of my ongoing checkups, she looks at my PSA scores, along with other blood work. Four days later, she reviewed the results. My PSA was 3.6, a doubling from 1.8 a year earlier. She recommended that I see a urologist or my primary care physician. At this point, I went to my computer, and Googled “Urologists in Bethesda.” Since I don’t drive. I found the name of a convenient group, one with several doctors, and looked over their doctors’ bios. I also called the SELECT Study and asked them to pull my chart and mail my previous PSA levels to me.
Monday, July 19, 2010:I took my PSA numbers to my primary care physician, who recommended that I see a urologist; interestingly, she recommended someone on my list. One alert however, was “just remember that he is an aggressive treater.” I made an appointment with the doctor.
Thursday, August 5, 2010: My wife and I went to see the doctor. He looked at all my numbers and gave me an exam. He told me that my prostate was enlarged, and he ordered another PSA test, from the same lab as before. The next day I went to have the test. I was told that the doctor would have the results on Monday.
Sunday, August 8, 2010: I went to church and prayed.
Monday, August 9, 2010: I waited all day…
Tuesday, August 10, 2010: I couldn’t wait any more, so I called the doctor’s office in the afternoon, and they said that they had not yet received my test results. I took a deep breath, and then went to another doctor’s appointment. When I returned, there was a message on my recorder from the urologist’s office: It said merely that “We have your results.” At that point they were closed for the day.
Wednesday, August 11, 2010: I got a phone call from the urologist’s office. My PSA level was 2.1, and they were happy with that. The higher one a month ago was probably an “outlier,” and they want another PSA in 4 months. I noted that I was going to the bathroom frequently. The nurse said she would speak with the doctor concerning a drug, possibly for BPH.
Thursday, August 12, 2010: I called the doctor’s office, and the nurse said that she would “present my case” to the doctor, who was currently seeing patients. In an hour or so, she called back and said that the doctor doesn’t want me to do anything, but to have a PSA and come back to see him in December. They said that it would be a period of “watchful waiting…”
So, like many on the early side of the spectrum, John waits to see what his future holds.
That’s the troublesome part of prostate cancer–with more than 20 genetic variations, it is so difficult to diagnose and distinguish. In fact, it is estimated that we currently spend more than $3 billion annually over-treating those with non-life-threatening prostate cancers while more than 32,000 American men will die from aggressive forms of the disease this year. We urgently need to cure more and over-treat less.
The outlook is promising, however, with more progress being made in research in 2010 than in the past ten years combined. It’s why the PCF team and more than 375 of the world’s leading prostate cancer researchers are descending on Washington in two week’s time. The latest scientific advances will be shared and we, along with other organizations supporting the cause, will call upon our government leaders to make the crucial investments for ending death and suffering from this disease and better managing health care costs. The time to act is now.
This is going to sound odd… but what the heck, anyone who is on a cancer road will agree–the entire experience is odd. Reality, time, perceptions and emotions are all distorted. It’s like living in, not just looking at, a Dali painting. But, if I had to be diagnosed with this cancer, I am glad that my PSA and biopsy numbers were clear cut. From surgery to ADT and to my upcoming weeks of radiation treatments, the stark clarity of my diagnostic data and the reality of “advanced disease” have made accepting my treatments easier. No lingering regrets here.
However, men who are in the early warning and diagnostic stages face a different set of anxieties, all sparked by our common enemy–the “C” word.
I had just received several emails from readers who suggested that I write some entries about earlier stage experience, when another reader, John M. contacted me. I believe there are no coincidences in life, so I am sharing John’s experience below. He is currently undergoing watchful waiting for prostate cancer. It’s what John calls his Bethesda Moment.
John M. wrote:
I want to write this to give another perspective on what men can and should do when their PSA scores wobble around. I don’t want people to be afraid – or not to take their bodies seriously. I am a 66-year-old man who has been retired from a position in the federal government for 5 years. I live in Bethesda, Maryland. For years, I have tried to “give back” to those people who have helped me in the past. I try to “pay it forward.”
I did this for many years by being a patient in various clinical trials, trying new drugs, and submitting to new procedures. One of the trials I undertook (the SELECT study) was for lung cancer incidence (John has not had lung cancer), and it involved taking a pill (or placebo) for 7 years. All along the way, multiple tests we done on me, including PSA blood levels. Each year they also examined my prostate, noting that it was gradually enlarging.
Monday, July 12, 2010: I went to see my Endocrinologist, as I do every 6 months. As part of my ongoing checkups, she looks at my PSA scores, along with other blood work. Four days later, she reviewed the results. My PSA was 3.6, a doubling from 1.8 a year earlier. She recommended that I see a urologist or my primary care physician. At this point, I went to my computer, and Googled “Urologists in Bethesda.” Since I don’t drive. I found the name of a convenient group, one with several doctors, and looked over their doctors’ bios. I also called the SELECT Study and asked them to pull my chart and mail my previous PSA levels to me.
Monday, July 19, 2010:I took my PSA numbers to my primary care physician, who recommended that I see a urologist; interestingly, she recommended someone on my list. One alert however, was “just remember that he is an aggressive treater.” I made an appointment with the doctor.
Thursday, August 5, 2010: My wife and I went to see the doctor. He looked at all my numbers and gave me an exam. He told me that my prostate was enlarged, and he ordered another PSA test, from the same lab as before. The next day I went to have the test. I was told that the doctor would have the results on Monday.
Sunday, August 8, 2010: I went to church and prayed.
Monday, August 9, 2010: I waited all day…
Tuesday, August 10, 2010: I couldn’t wait any more, so I called the doctor’s office in the afternoon, and they said that they had not yet received my test results. I took a deep breath, and then went to another doctor’s appointment. When I returned, there was a message on my recorder from the urologist’s office: It said merely that “We have your results.” At that point they were closed for the day.
Wednesday, August 11, 2010: I got a phone call from the urologist’s office. My PSA level was 2.1, and they were happy with that. The higher one a month ago was probably an “outlier,” and they want another PSA in 4 months. I noted that I was going to the bathroom frequently. The nurse said she would speak with the doctor concerning a drug, possibly for BPH.
Thursday, August 12, 2010: I called the doctor’s office, and the nurse said that she would “present my case” to the doctor, who was currently seeing patients. In an hour or so, she called back and said that the doctor doesn’t want me to do anything, but to have a PSA and come back to see him in December. They said that it would be a period of “watchful waiting…”
So, like many on the early side of the spectrum, John waits to see what his future holds.
That’s the troublesome part of prostate cancer–with more than 20 genetic variations, it is so difficult to diagnose and distinguish. In fact, it is estimated that we currently spend more than $3 billion annually over-treating those with non-life-threatening prostate cancers while more than 32,000 American men will die from aggressive forms of the disease this year. We urgently need to cure more and over-treat less.
The outlook is promising, however, with more progress being made in research in 2010 than in the past ten years combined. It’s why the PCF team and more than 375 of the world’s leading prostate cancer researchers are descending on Washington in two week’s time. The latest scientific advances will be shared and we, along with other organizations supporting the cause, will call upon our government leaders to make the crucial investments for ending death and suffering from this disease and better managing health care costs. The time to act is now.