It is Wednesday evening and my wife and I have returned from a consultation today at the National Institutes of Health (NIH) to review recommendations for treatment of the prostate cancer discovered on biopsy a month ago. The recommendation is for more testing to best determine how to proceed. There was a sense of concern, but no sense of alarm.
This very valuable consultation is offered by the National Cancer Institute (NCI) at the NIH as a public service, and my urologist had both recommended to me that I engage with it, and had asked the NIC to contact me to get the appointment set up. This is how it works: a multi-disciplinary team is made of a urologist, a specialist in cancer drug therapy, and an expert in cancer radiation therapy work with a radiologist, who interprets the bone scan and CT scan information, and a pathologist who reviews the biopsy slides. A physician interviews me and does a physical examination. The panel meets privately to review information already gathered by my doctors and returns to meet with me and a family member or friend to provide recommendations. This is a huge benefit, and there is no charge and no insurance to manage. An example of your tax dollars at work.
I’ve been working for a week to get information sent to the NCI. My old urologist, a person I’d been seeing at my former residence, sent his clinical summary and old PSA numbers. My new urologist sent his clinical records and the written interpretation of my biopsy slides and my CT scan and bone scan. The center that did the bone scan and CT scan provided a CD that allowed the NCI radiologist to see the study for himself and make an independent reading. It took a few calls and faxes, but everyone coperated. I am very grateful.
The only holdout was the company that did the reading of the biopsy slides. This company refused to send the slides to NCI because they took the view that the slides could only be loaned and must be returned. They claim that the NIH has had a history of keeping the slides and not returning them. So they responded to my request for overnight shipment of my slides to the NCI by opening some sort of dialog with NCI and not sending the slides at all. Rather than the overnight delivery I had expected, and paid for, I received a call on the third day after my order telling me that the company had declined to send the slides. The slides have still not been released. The physicians at the NCI tell me that the slides are my personal property and I should request that they be sent to me to keep, and that I should then provide them, again temporarily, to any other organization I want to consult with. OK. On my to-do list.
Fortunately the failure of the slide folks to do what I requested did not derail the consultation. I arrived at the NIH clinical center, getting off the subway at 9 AM. After going through a security process that is very similar to that in an airport I took a free shuttle to the main building. Inside, very pleasant and polite people updated my registration information, drew blood for another PSA test (51), and I had time left over for a cappuccino at the Au Bon Pain branch in the center atrium before going to the appointment at 12:30. A very pleasant nurse began the process, than a radiation cancer treatment physician reviewed my history, did a physical that included the required digital rectal exam (no nodules) and answered lots of questions. Essentially these points arose:
First – my long history of a high PSA is confusing. The biopsy results themselves suggest a moderate risk that cancer has already extended outside the capsule of the prostate. If the PSA is also considered, the risk appears high. But since the PSA could be explained by either some sort of ongoing irritation or infection, it is hard to understand how to consider it. The importance of this detail is that radiation is a more appropriate treatment if the risk is high, and surgery if the risk is only moderate.
Second issue is that according to the best information available, this cancer, if untreated, is likely to shorten my life by only a year or two. If it is treated, the likelihood ranges from 50 to 75% that it will be cured, and the end of my life will not be a time under treatment for cancer that has spread outside the prostate, but, instead, will be the same sort of end that is in store anyway.
Lastly, chances are about 1 in 3 that this cancer has already extended outside the prostate. This is critical for treatment, because surgery without radiation could be curative, at a 40% risk of lifelong impotence, and radiation therapy could be curative as well, with less likelihood of life long impotence, although a drug like Viagra would likely be needed for about 40% of people. I take this as good news.
After the exam an explanations, the physician asked me to return in about an hour to give the panel time to discuss my case. As scheduled, wife came to the center to join me for the follow up meeting with the panel to hear their combined judgment. The experts were patient and helpful. Their final feelings were simple. First, take antibiotics for six weeks to see if such treatment, alone, drops my PSA levels. If so, it makes cancer spread outside the prostate less likely, and surgery a more appropriate treatment. Second, schedule an endorectal coil MRI for a time about a month from now, to get further information about whether there is any local extension of cancer outside the prostate. This has been set for the week before Thanksgiving. The delay doing the MRI until two months after the biopsy is to give the prostate full time to heal from the biopsy itself. A week after the MRI, and after looking at the biopsy slides independently, the panel will again discuss my case and again meet with me with its recommendations. This second meeting is scheduled for early December. No charge for the antibiotics or for the MRI test or for the consultations. Man, what a great process.
Bottom line. A valuable consultation. There is cancer. It could be aggressive, but even if aggressive it is a slow grower and nothing needs to be done immediately. Second, with more information a better recommendation for treatment is available. The panel is willing to provide this second review and provide its recommendations to me at that time. My wife and I are much more relaxed. There is no longer the sense that life may come to an end in the next few months. A number of options are available. There are experts willing to offer assistance. A good result seems likely. I really can't ask for more. Now I have to do something about getting a hold of my biopsy slides.
This very valuable consultation is offered by the National Cancer Institute (NCI) at the NIH as a public service, and my urologist had both recommended to me that I engage with it, and had asked the NIC to contact me to get the appointment set up. This is how it works: a multi-disciplinary team is made of a urologist, a specialist in cancer drug therapy, and an expert in cancer radiation therapy work with a radiologist, who interprets the bone scan and CT scan information, and a pathologist who reviews the biopsy slides. A physician interviews me and does a physical examination. The panel meets privately to review information already gathered by my doctors and returns to meet with me and a family member or friend to provide recommendations. This is a huge benefit, and there is no charge and no insurance to manage. An example of your tax dollars at work.
I’ve been working for a week to get information sent to the NCI. My old urologist, a person I’d been seeing at my former residence, sent his clinical summary and old PSA numbers. My new urologist sent his clinical records and the written interpretation of my biopsy slides and my CT scan and bone scan. The center that did the bone scan and CT scan provided a CD that allowed the NCI radiologist to see the study for himself and make an independent reading. It took a few calls and faxes, but everyone coperated. I am very grateful.
The only holdout was the company that did the reading of the biopsy slides. This company refused to send the slides to NCI because they took the view that the slides could only be loaned and must be returned. They claim that the NIH has had a history of keeping the slides and not returning them. So they responded to my request for overnight shipment of my slides to the NCI by opening some sort of dialog with NCI and not sending the slides at all. Rather than the overnight delivery I had expected, and paid for, I received a call on the third day after my order telling me that the company had declined to send the slides. The slides have still not been released. The physicians at the NCI tell me that the slides are my personal property and I should request that they be sent to me to keep, and that I should then provide them, again temporarily, to any other organization I want to consult with. OK. On my to-do list.
Fortunately the failure of the slide folks to do what I requested did not derail the consultation. I arrived at the NIH clinical center, getting off the subway at 9 AM. After going through a security process that is very similar to that in an airport I took a free shuttle to the main building. Inside, very pleasant and polite people updated my registration information, drew blood for another PSA test (51), and I had time left over for a cappuccino at the Au Bon Pain branch in the center atrium before going to the appointment at 12:30. A very pleasant nurse began the process, than a radiation cancer treatment physician reviewed my history, did a physical that included the required digital rectal exam (no nodules) and answered lots of questions. Essentially these points arose:
First – my long history of a high PSA is confusing. The biopsy results themselves suggest a moderate risk that cancer has already extended outside the capsule of the prostate. If the PSA is also considered, the risk appears high. But since the PSA could be explained by either some sort of ongoing irritation or infection, it is hard to understand how to consider it. The importance of this detail is that radiation is a more appropriate treatment if the risk is high, and surgery if the risk is only moderate.
Second issue is that according to the best information available, this cancer, if untreated, is likely to shorten my life by only a year or two. If it is treated, the likelihood ranges from 50 to 75% that it will be cured, and the end of my life will not be a time under treatment for cancer that has spread outside the prostate, but, instead, will be the same sort of end that is in store anyway.
Lastly, chances are about 1 in 3 that this cancer has already extended outside the prostate. This is critical for treatment, because surgery without radiation could be curative, at a 40% risk of lifelong impotence, and radiation therapy could be curative as well, with less likelihood of life long impotence, although a drug like Viagra would likely be needed for about 40% of people. I take this as good news.
After the exam an explanations, the physician asked me to return in about an hour to give the panel time to discuss my case. As scheduled, wife came to the center to join me for the follow up meeting with the panel to hear their combined judgment. The experts were patient and helpful. Their final feelings were simple. First, take antibiotics for six weeks to see if such treatment, alone, drops my PSA levels. If so, it makes cancer spread outside the prostate less likely, and surgery a more appropriate treatment. Second, schedule an endorectal coil MRI for a time about a month from now, to get further information about whether there is any local extension of cancer outside the prostate. This has been set for the week before Thanksgiving. The delay doing the MRI until two months after the biopsy is to give the prostate full time to heal from the biopsy itself. A week after the MRI, and after looking at the biopsy slides independently, the panel will again discuss my case and again meet with me with its recommendations. This second meeting is scheduled for early December. No charge for the antibiotics or for the MRI test or for the consultations. Man, what a great process.
Bottom line. A valuable consultation. There is cancer. It could be aggressive, but even if aggressive it is a slow grower and nothing needs to be done immediately. Second, with more information a better recommendation for treatment is available. The panel is willing to provide this second review and provide its recommendations to me at that time. My wife and I are much more relaxed. There is no longer the sense that life may come to an end in the next few months. A number of options are available. There are experts willing to offer assistance. A good result seems likely. I really can't ask for more. Now I have to do something about getting a hold of my biopsy slides.