docw1
Bill Rankin
Because most of the members here are men and many of those are in that "certain age", and as I just recently got intimately familiar with prostate cancer, I thought I'd start a forum here to discuss diagnosing, treating, and experiences our members have had with prostate cancer. I have attached a PDF describing some of the statistics which recently showed up in my paper, and I expect many other papers around the nation.
I'll start with my own experience.
about 19 years ago, I went in for a routine physical where my doctor detected a small lump on the prostate. The following biopsy showed it to be PIN (prostatic intra-epithelial neoplasia) or a low-grade cancer, so low some don't even consider it cancer. I think the PSA was a little elevated. Subsequent biopsies failed to find even that. Since I was now under the care of a urologist, we did a little more PSA testing than a primary care physician might (more on that later). After a particularly bad case of prostatitis, another biopsy also proved negative for cancer. PSAs went up and down but never seemed too concerning.
About three years ago, I was diagnosed with bladder cancer, so had to see the urologist frequently. His approach at the time was to scrape and watch. About every 18 months after that he would detect a new growth and scrape it out. We had been monitoring the PSA about every 6 months. The last PSA test showed higher elevation than before, but still only in the 8 range (0-4 is considered normal, but cancer can develop even in that range and higher levels don't necessarily mean cancer). The next step is now an MRI of the prostate, a relatively new test that can show suspicious areas to direct the biopsy needle. It came back showing multiple suspicious areas on both sides of the prostate. Subsequent biopsy showed a moderately advanced cancer (Gleason 7 (4+3)). Time to decide what I wanted to do, with his input. I was thinking of starting with radiation. Who really wants surgery if it can be avoided? Off to a radiation oncologist. He felt that the particular location of the cancer would not lend itself to either external or internal radiation, and that radiation first could make it difficult for any subsequent surgery, as well as treating the bladder cancer. So my urologist referred me to the state university hospital.
The university urologist really wanted to get on top of the bladder cancer first, as he felt that was the most threatening to life, so he put me on Lupron, an injectable anti-testosterone. Since prostate cancer seems to thrive in the presence of androgens, giving a blocker usually really puts the brakes on the cancer. One (painful) injection lasts about three months. We did that for 6 months while he worked on the bladder cancer. We're not done with the bladder yet, but he felt it was slowed down enough that he could address the prostate. So, 6 days ago, I went in for a prostatectomy. Typically, with the robotic surgery they do now, they expect a one-night stay then discharge. Unfortunately, I was one of about 1-2% of patients who developed post-op bleeding. I wasn't bleeding out, but, rather, internally, around the operative site, detected by a steep drop in my hemoglobin, from 14.7 pre-op to 10.3 soon after surgery. In the next couple days it got down to 7.4. So about half my blood went into a hematoma around the operative site. I actually didn't feel too bad, but I was in bed most of the time. The feeling was that the blood clot would eventually tamponade the bleeding, and would eventually reabsorb, and any surgical intervention would be problematic. Finally they gave me one unit of blood, and I left the hospital with a hemoglobin of 8.6. What was to have been an overnight stay was actually four nights. I can certainly feel the anemia, but I expect it to slowly pick up. The hematoma is starting to break down, and the blood is flowing along tissue planes out to the skin where it presents as a huge bruise on my left torso, and now starting on my abdomen and right torso.
My biopsy showed, actually, no cancer. At least none that they could detect. According to my doctor, the Lupron changes the cancer so that they resemble more normal cells. That's also the reason he had to sacrifice the neuro-vascular bundles alongside the prostate, as he couldn't be sure where any cancer stopped. These items help post-op incontinence and erections.
So I'm home with a catheter to protect the anastomosis of the urethra to the bladder. It comes out next week when they'll do a cystogram to be sure there are no leaks. Then it's probably going to be Depends for a while until I can get the continence back, maybe as long as a year.
The PSA test is an imperfect test for screening for prostate cancer, but it's the best we have at the moment. When it first came out, everyone was excited. We were encouraging every man over 50 to get tested every year. Gradually they discovered that perhaps we were doing more harm than good. They were picking up lot of tiny cancers that they felt were destined to not go anywhere, so the doctors were causing more morbidity by pursuing biopsy and surgery than by leaving them alone. There's growing movement to use "Active Surveillance" to follow small cancers, but that does mean repeated biopsies. The MRI may help change that a bit.
It will be useful to hear first-hand experiences of other members wha have or are going through prostate cancer.
I'll start with my own experience.
about 19 years ago, I went in for a routine physical where my doctor detected a small lump on the prostate. The following biopsy showed it to be PIN (prostatic intra-epithelial neoplasia) or a low-grade cancer, so low some don't even consider it cancer. I think the PSA was a little elevated. Subsequent biopsies failed to find even that. Since I was now under the care of a urologist, we did a little more PSA testing than a primary care physician might (more on that later). After a particularly bad case of prostatitis, another biopsy also proved negative for cancer. PSAs went up and down but never seemed too concerning.
About three years ago, I was diagnosed with bladder cancer, so had to see the urologist frequently. His approach at the time was to scrape and watch. About every 18 months after that he would detect a new growth and scrape it out. We had been monitoring the PSA about every 6 months. The last PSA test showed higher elevation than before, but still only in the 8 range (0-4 is considered normal, but cancer can develop even in that range and higher levels don't necessarily mean cancer). The next step is now an MRI of the prostate, a relatively new test that can show suspicious areas to direct the biopsy needle. It came back showing multiple suspicious areas on both sides of the prostate. Subsequent biopsy showed a moderately advanced cancer (Gleason 7 (4+3)). Time to decide what I wanted to do, with his input. I was thinking of starting with radiation. Who really wants surgery if it can be avoided? Off to a radiation oncologist. He felt that the particular location of the cancer would not lend itself to either external or internal radiation, and that radiation first could make it difficult for any subsequent surgery, as well as treating the bladder cancer. So my urologist referred me to the state university hospital.
The university urologist really wanted to get on top of the bladder cancer first, as he felt that was the most threatening to life, so he put me on Lupron, an injectable anti-testosterone. Since prostate cancer seems to thrive in the presence of androgens, giving a blocker usually really puts the brakes on the cancer. One (painful) injection lasts about three months. We did that for 6 months while he worked on the bladder cancer. We're not done with the bladder yet, but he felt it was slowed down enough that he could address the prostate. So, 6 days ago, I went in for a prostatectomy. Typically, with the robotic surgery they do now, they expect a one-night stay then discharge. Unfortunately, I was one of about 1-2% of patients who developed post-op bleeding. I wasn't bleeding out, but, rather, internally, around the operative site, detected by a steep drop in my hemoglobin, from 14.7 pre-op to 10.3 soon after surgery. In the next couple days it got down to 7.4. So about half my blood went into a hematoma around the operative site. I actually didn't feel too bad, but I was in bed most of the time. The feeling was that the blood clot would eventually tamponade the bleeding, and would eventually reabsorb, and any surgical intervention would be problematic. Finally they gave me one unit of blood, and I left the hospital with a hemoglobin of 8.6. What was to have been an overnight stay was actually four nights. I can certainly feel the anemia, but I expect it to slowly pick up. The hematoma is starting to break down, and the blood is flowing along tissue planes out to the skin where it presents as a huge bruise on my left torso, and now starting on my abdomen and right torso.
My biopsy showed, actually, no cancer. At least none that they could detect. According to my doctor, the Lupron changes the cancer so that they resemble more normal cells. That's also the reason he had to sacrifice the neuro-vascular bundles alongside the prostate, as he couldn't be sure where any cancer stopped. These items help post-op incontinence and erections.
So I'm home with a catheter to protect the anastomosis of the urethra to the bladder. It comes out next week when they'll do a cystogram to be sure there are no leaks. Then it's probably going to be Depends for a while until I can get the continence back, maybe as long as a year.
The PSA test is an imperfect test for screening for prostate cancer, but it's the best we have at the moment. When it first came out, everyone was excited. We were encouraging every man over 50 to get tested every year. Gradually they discovered that perhaps we were doing more harm than good. They were picking up lot of tiny cancers that they felt were destined to not go anywhere, so the doctors were causing more morbidity by pursuing biopsy and surgery than by leaving them alone. There's growing movement to use "Active Surveillance" to follow small cancers, but that does mean repeated biopsies. The MRI may help change that a bit.
It will be useful to hear first-hand experiences of other members wha have or are going through prostate cancer.
