After today’s visit to the National Institutes of Health (NIH) for evaluation of my prostate cancer, I can hear grating sound of scalpels being sharpened. I've not been able to emotionally process this visit yet, but the physicians there have offered their recommendations. It’s going to be a journey.
Like earlier visits at the NIH, the visit was marked by impressive professionalism and depth of experience. The staff that my wife and I spoke with included a medical oncologist, who treats cancer with drugs; a radiation oncologist, who uses radiation; and a surgeon, who uses sharp steel blades, maybe with robotic assistance. The group reviewed the evidence of a very complete evaluation that has taken three months to complete and included: my medical history with PSA scores over 20 for some 15 years; the prostate biopsy results that showed a fairly aggressive cancer on both sides of my prostate; a bone scan that did not show any evidence of remote spread of the cancer to far off places like bones; a CT scan that specifically looked for lymph nodes that might have been invaded by cancer, and found none; the results of PSA tests, which have persistently showed levels around 50 (the normal is like 3); and, finally, the test done last week, the MRI which, unfortunately, showed two masses next to my prostate, each almost as big around as a dime, that might represent cancer that has grown out through the prostate wall and is beginning to grow locally.
The meaning of all this, as I understand it, is this:, 1) I’ve got prostate cancer, 2) it’s aggressive and could shorten my life, 3) that watching and waiting to see if it causes me problems down the road, like loss of appetite, weight loss, pain in bones, and so on, leading to death, is probably not a good idea, and 4) some sort of treatment with a decent chance of curing the condition, in practical terms, probably is a good idea.
The big issue with prostate cancer is determining whether these growths are worth treating. The cancer is so slow growing that it is found on autopsy in men who died of other problems, and in whom it had never caused any trouble. Just finding that a man has prostate cancer does not necessarily mean it needs to be removed, particularly when the treatment can lead to long term impotence. But some prostate cancers are life threatening. The careful evaluation I’ve just undergone says that mine is one of those.
So, what kind of treatment would be appropriate? There are two basic types of treatment for prostate cancer than has not spread throughout the body: surgery and radiation. Surgery removes the prostate and, hopefully, all the cancer. There is a real risk of the patient having urinary leakage (incontinence), especially when coughing, or picking up something heavy. This can last for years, if not for life. And there is also the real risk on not having natural erections for years, if not for life. Alternatively, radiation destroys the cancer without surgery, but has side effects including irritation of the bladder, the prostate and of the rectum leading to a feeling of a need to urinate or to have a bowel movement when, in fact, there is little that needs to get out, and also making urinating more difficult. Patients getting radiation are often fatigued and find it hard to complete a normal work day. Radiation patients and surgical patients have about the same risk of losing their natural erections after treatment. Surgical patients become impotent immediately, but stand about a 50/50 chance of return of normal erections; radiation patients are OK right after treatment, but many lose their erectile capabilities over the next few years. The two groups end up about even after four years.
Because I have a prostate the size of a tennis ball instead of the size of a walnut, I already have some difficulty urinating, and radiation would make that worse. The more logical choice is to go for surgery.
The experts recommended just that approach with this view: 1) Do the surgery. It is possible the surgery will remove all the cancer, no further treatment will be needed, and, hopefully, neither incontinence nor erectile dysfunction will be permanent. 2) If the surgery was unable to remove all the cancer, follow up with appropriate doses of radiation therapy. 3) If at surgery it is discovered that cancer has already invaded the lymph nodes, use hormone therapy, in addition, to greatly slow down the rate at which this cancer grows. More on this in a bit.
This approach strikes me as pretty sane. The team is suggesting a layered approach of doing as little harm as possible and continuing to work, but only if necessary, until they’ve exhausted all the tools known to work. Makes sense to me.
My wife and I have decided to accept this recommendation. Surgery will be planned for sometime next month. Recovery to normal day to day function, with only occasional urine leaks, should be complete in a couple of months, by which time I should be able to ride a bicycle again. Then, only if there is evidence that the surgery was unable to remove all the cancer, daily radiation treatment would begin and last a couple of months, starting about three to four months after the surgery, the delay to let the surgical trauma inside heal completely. However, if there were evidence at surgery that the cancer had already invaded lymph nodes, hormone therapy would be started, maybe even before the radiation.
Hormone therapy uses the fact that both prostate cancer and prostate glands themselves are stimulated to grow by testosterone, something I seem to have plenty of. Using hormones, testosterone production can be stopped and testosterone action can be blocked. The result is to deprive the cancer cells of their stimulus to growth, and this, by itself, greatly slows the advance of the disease. The treatment side effects include things like loss of bone density, some elevation of bad cholesterol, fatigue, some loss of muscle mass, and then a couple that seem really personal: loss of libido and possible breast enlargement. None of these are among things I am seeking. I'll avoid hormone therapy if possible.
At the outset of the evaluation of my high PSA, my hope was that the prostate biopsy would not find cancer at all, and the large prostate was itself responsible for the elevated PSA. When the biopsy found cancer, but the bone scan and CT scan found no evidence of spread, I hoped that the cancer would be confined to the prostate itself and that surgery alone would be a adequate treatment, both for the cancer and for the urination symptoms the large prostate was causing me. But the very high PSA had people stumped because a high PSA is associated with a lower likelihood of a surgical cure. So the evaluation was extended for almost three months while I took an antibiotic to see if the PSA might go down from treatment of a possible chronic prostate infection. And, at the same time, I swore off bicycle riding in the event that just bouncing around on a bicycle seat was elevating my PSA. Sadly, the PSA stayed stubbornly near 50. Then the final MRI scan showed possible, but not conclusive evidence that the cancer may not be confined to the prostate gland itself, so the treatment team is prepared to provide radiation treatment if tests after the surgery show that some cancer was left behind. And if those tests show that some cancer has already worked its way into the lymph nodes, then they will be recommending hormone therapy to delay further growth as long as possible.
Is there a way to quantify the benefit of treatment? On the one hand it seems obvious that if you have cancer you do something about it. If you do something, what’s likely to be the result? Again, the team emphasizes that my case, like all cases, is unique and the crystal ball for predicting prostate cancer is very cloudy. The best evidence is that, with treatment, I have something like a 50/50 chance that no evidence of further cancer activity will appear in the next 10 years. If evidence of cancer does reappear, it’s a matter of again looking and seeing what should be done. If the cancer does not reappear, I may be actually cured. All very speculative. The best information available.
A lot of “if’s” remain. But the team recommendations seem really sound. It appears possible that the entire treatment might be conducted at the National Institutes of Health. I don’t think I could ask for a better spot to get care. I’d welcome any other opinions.
Final thought. Although I’ve reviewed what happened today in a factual sort of way, I am very aware that I have not yet digested this event from an emotional point of view. What does this say about my life? My family? My work? Our plans? Will I be under some cloud of worry? I don’t even know what the questions are yet. I hope that I am able to sleep well tonight. Tomorrow, as is so often the case, is another work day. Clearly this is only the beginning of a very long adventure.
.
Like earlier visits at the NIH, the visit was marked by impressive professionalism and depth of experience. The staff that my wife and I spoke with included a medical oncologist, who treats cancer with drugs; a radiation oncologist, who uses radiation; and a surgeon, who uses sharp steel blades, maybe with robotic assistance. The group reviewed the evidence of a very complete evaluation that has taken three months to complete and included: my medical history with PSA scores over 20 for some 15 years; the prostate biopsy results that showed a fairly aggressive cancer on both sides of my prostate; a bone scan that did not show any evidence of remote spread of the cancer to far off places like bones; a CT scan that specifically looked for lymph nodes that might have been invaded by cancer, and found none; the results of PSA tests, which have persistently showed levels around 50 (the normal is like 3); and, finally, the test done last week, the MRI which, unfortunately, showed two masses next to my prostate, each almost as big around as a dime, that might represent cancer that has grown out through the prostate wall and is beginning to grow locally.
The meaning of all this, as I understand it, is this:, 1) I’ve got prostate cancer, 2) it’s aggressive and could shorten my life, 3) that watching and waiting to see if it causes me problems down the road, like loss of appetite, weight loss, pain in bones, and so on, leading to death, is probably not a good idea, and 4) some sort of treatment with a decent chance of curing the condition, in practical terms, probably is a good idea.
The big issue with prostate cancer is determining whether these growths are worth treating. The cancer is so slow growing that it is found on autopsy in men who died of other problems, and in whom it had never caused any trouble. Just finding that a man has prostate cancer does not necessarily mean it needs to be removed, particularly when the treatment can lead to long term impotence. But some prostate cancers are life threatening. The careful evaluation I’ve just undergone says that mine is one of those.
So, what kind of treatment would be appropriate? There are two basic types of treatment for prostate cancer than has not spread throughout the body: surgery and radiation. Surgery removes the prostate and, hopefully, all the cancer. There is a real risk of the patient having urinary leakage (incontinence), especially when coughing, or picking up something heavy. This can last for years, if not for life. And there is also the real risk on not having natural erections for years, if not for life. Alternatively, radiation destroys the cancer without surgery, but has side effects including irritation of the bladder, the prostate and of the rectum leading to a feeling of a need to urinate or to have a bowel movement when, in fact, there is little that needs to get out, and also making urinating more difficult. Patients getting radiation are often fatigued and find it hard to complete a normal work day. Radiation patients and surgical patients have about the same risk of losing their natural erections after treatment. Surgical patients become impotent immediately, but stand about a 50/50 chance of return of normal erections; radiation patients are OK right after treatment, but many lose their erectile capabilities over the next few years. The two groups end up about even after four years.
Because I have a prostate the size of a tennis ball instead of the size of a walnut, I already have some difficulty urinating, and radiation would make that worse. The more logical choice is to go for surgery.
The experts recommended just that approach with this view: 1) Do the surgery. It is possible the surgery will remove all the cancer, no further treatment will be needed, and, hopefully, neither incontinence nor erectile dysfunction will be permanent. 2) If the surgery was unable to remove all the cancer, follow up with appropriate doses of radiation therapy. 3) If at surgery it is discovered that cancer has already invaded the lymph nodes, use hormone therapy, in addition, to greatly slow down the rate at which this cancer grows. More on this in a bit.
This approach strikes me as pretty sane. The team is suggesting a layered approach of doing as little harm as possible and continuing to work, but only if necessary, until they’ve exhausted all the tools known to work. Makes sense to me.
My wife and I have decided to accept this recommendation. Surgery will be planned for sometime next month. Recovery to normal day to day function, with only occasional urine leaks, should be complete in a couple of months, by which time I should be able to ride a bicycle again. Then, only if there is evidence that the surgery was unable to remove all the cancer, daily radiation treatment would begin and last a couple of months, starting about three to four months after the surgery, the delay to let the surgical trauma inside heal completely. However, if there were evidence at surgery that the cancer had already invaded lymph nodes, hormone therapy would be started, maybe even before the radiation.
Hormone therapy uses the fact that both prostate cancer and prostate glands themselves are stimulated to grow by testosterone, something I seem to have plenty of. Using hormones, testosterone production can be stopped and testosterone action can be blocked. The result is to deprive the cancer cells of their stimulus to growth, and this, by itself, greatly slows the advance of the disease. The treatment side effects include things like loss of bone density, some elevation of bad cholesterol, fatigue, some loss of muscle mass, and then a couple that seem really personal: loss of libido and possible breast enlargement. None of these are among things I am seeking. I'll avoid hormone therapy if possible.
At the outset of the evaluation of my high PSA, my hope was that the prostate biopsy would not find cancer at all, and the large prostate was itself responsible for the elevated PSA. When the biopsy found cancer, but the bone scan and CT scan found no evidence of spread, I hoped that the cancer would be confined to the prostate itself and that surgery alone would be a adequate treatment, both for the cancer and for the urination symptoms the large prostate was causing me. But the very high PSA had people stumped because a high PSA is associated with a lower likelihood of a surgical cure. So the evaluation was extended for almost three months while I took an antibiotic to see if the PSA might go down from treatment of a possible chronic prostate infection. And, at the same time, I swore off bicycle riding in the event that just bouncing around on a bicycle seat was elevating my PSA. Sadly, the PSA stayed stubbornly near 50. Then the final MRI scan showed possible, but not conclusive evidence that the cancer may not be confined to the prostate gland itself, so the treatment team is prepared to provide radiation treatment if tests after the surgery show that some cancer was left behind. And if those tests show that some cancer has already worked its way into the lymph nodes, then they will be recommending hormone therapy to delay further growth as long as possible.
Is there a way to quantify the benefit of treatment? On the one hand it seems obvious that if you have cancer you do something about it. If you do something, what’s likely to be the result? Again, the team emphasizes that my case, like all cases, is unique and the crystal ball for predicting prostate cancer is very cloudy. The best evidence is that, with treatment, I have something like a 50/50 chance that no evidence of further cancer activity will appear in the next 10 years. If evidence of cancer does reappear, it’s a matter of again looking and seeing what should be done. If the cancer does not reappear, I may be actually cured. All very speculative. The best information available.
A lot of “if’s” remain. But the team recommendations seem really sound. It appears possible that the entire treatment might be conducted at the National Institutes of Health. I don’t think I could ask for a better spot to get care. I’d welcome any other opinions.
Final thought. Although I’ve reviewed what happened today in a factual sort of way, I am very aware that I have not yet digested this event from an emotional point of view. What does this say about my life? My family? My work? Our plans? Will I be under some cloud of worry? I don’t even know what the questions are yet. I hope that I am able to sleep well tonight. Tomorrow, as is so often the case, is another work day. Clearly this is only the beginning of a very long adventure.
.