I guess I should have waited one more day before making my previous post because on 15 December I got my catheter removed - and I say a big "Hooray!!" for that! - and then I got even better news:
I got a copy of the histopathology report on the biopsy of my removed prostate and, assuming I am reading it and understanding it correctly, it suggests that the cancer was entirely contained within the prostate and was therefore removed from my body. That is, there is a very good chance that I am effectively "cured" of cancer!
I'll know more when I have a blood test in four weeks or so. At that time, my PSA should be zero (or, at least, very, very low). Assuming that's the case, I'll still have my PSA periodically checked for several years to be sure.
As you might imagine, I was pretty happy to receive this news!
I'll repeat the main part of the histopathology report here and maybe one of my medical friends (Peter? Mike? Kim? Robert? Gina?) can let me know if there's something important I'm missing:
Histological type: Acinar adenocarcinoma
Tumour location:
Dominant nodule - Central anterior, extending into left and right lobes and spanning from upper to lower prostate including the apex.
Non-dominant (>10mm) nodules - Right posterior mid to lower prostate and apex;
Left posterior mid to lower prostate and apex.
Volume of dominant nodule: 3.84 cu cm
Volume of non-dominant nodules: right 0.43 cu cm, left 2.95 cu cm
Gleason score (ISUP 2005): 3+4=7 (all nodules)
Tumour stage: pT2c
Extra-prostatic extension: Absent
Surgical margins: Negative for cancer
Seminal vesicles: Not involved
Lymphovascular invasion: Absent
Perineural invasion: Present
Prostatic intraepithelial neoplasia: Present
Neurovascular bundles: Absent bilaterally
My main area of concern is "Perineural invasion: Present". Wikipedia tells me "perineural invasion, abbreviated PNI, refers to cancer spreading to the space surrounding a nerve." So I'm wondering if this has to do with nerves that were removed as part of the prostate, or if it refers to the nerves that the "nerve-sparing" surgery left inside of me. I'm assuming that it's something like the former, but I'll get more information when I see my urologist/surgeon in four weeks or so. (Or one of my more knowledgeable readers will provide more insight...)
Anyway, it's great to know that it's likely that we have obtained the desired result! Long(er) life, here I come!
Monday, 19 December 2011
Wednesday, 14 December 2011
I've had my surgery, I'm back home, and things are "OK"
My surgery happened on 8 December and it seemed to go well. I was discharged from the hospital on 11 December. I will now be recovering at home, as well as dealing with the more long-term effects of the surgery, for the next six weeks.
So far, it is going well, in that I am able to get around on my own - albeit slowly and carefully - and there is almost no pain (just some discomfort from having an incision across my abdomen). Every day I have felt a little bit better and I remain basically hopeful and optimistic about the future. I hope that I am now "cured" of my prostate cancer - because we have removed it all from my body - but will probably not know anything more definitive until my follow-up appointment with the surgeon/urologist in about six weeks. The story goes on...(as always).
It has taken me three days of being back at home to finally get this blog entry written. That's partly because I have been focusing strongly on just relaxing/recovering and keeping up with my medications and post-operation procedures, and partly because, as you already know, it takes me a long time to actually get anything composed/written (sigh). As usual, my apologies for the delay (if you were waiting for a post-surgery update).
So that's pretty much the main news. The rest of this post is Other Notes about my time in the hopsital, my condition, and possibilities for the future:
- On 8 December, Ann and I arrived at the hospital for my admission at 6:30 AM, as instructed. (Many thanks to Tee for getting up so early and watching Zuperfliegen so that Ann could attend!) I was taken into surgery at 12:30 PM! It turns out they have all the morning surgery patients come in at the same time - so they have flexibility if they need to shuffle the schedule - and I was apparently pretty close to the bottom of the list. So the most effective method for the hospital was for me to get up early and sit around for six hours? Perhaps this is a function of being treated in the "public" health system.
- Ann and I had been told that the surgery would be 2-3 hours in duration. But I came out of the anaesthetic around 6:00 PM, suggesting that it may have actually lasted about 5 hours! I don't begrudge the medical personnel this difference; I wanted them to be able to do whatever they needed, no matter how long it took. Still, it was a little odd, and it made Ann anxious that no updates were coming when she expected them.
- I got to see my surgeon/urologist shortly before being taken into the operating theatre. He was the first one I saw when I was initially referred to a specialist for my suspicious PSA levels. At the time of my surgery, I had not seen him for a couple of months or more. I asked him about the difference in the plan for my lymph nodes. Specifically: When I first saw him as a private patient, his plan was to remove my lymph nodes (for further analysis of whether the cancer had spread past the prostate), as well as do a nerve-sparing surgery. But when I thought I might have a "robotic" surgery done, I was referred to his collegaue, who thought my lymph nodes should not be removed, and I should not have a nerve-sparing surgery. The fact that the two experts held diametrically opposed views on these issues was unsettling! Then, when I balked at the potential cost of private surgery, they referred me to the clinical trial and I was randomly assigned to the first/original urologist and told that my lymph nodes would not be removed, but he would do the nerve-sparing surgery. So when I asked him about this before the surgery, he said the clinical trial has protocols it has to follow; and that there was probably a 2% chance that cancer had spread to the lymph nodes, but possibly a greater percentage of there being unwanted complications if we removed them. It all sounded to me a little like "we give you the answer that best matches the current version of the situation". Which is potentially problematic, but it does underscore the uncertainties that exist with cancer and surgery in general. And, ultimately, as the patient, you have to do the best research you can so you can make the best decision you can; and then it still comes down to putting yourself in the care of the surgeon and hoping/assuming/believing that he or she will do the best they can and that will be enough.
- The surgeon also casually mentioned that I might need radiotherapy treatments later, because of the nerve-sparing surgery. um...WHAT? The idea is that the nerves being spared are wrapped around the prostate; so the surgeon leaves the outer layer of the prostate such that the nerves still have tissue to cling to and are not irreparably damaged. But if the remaining tissue has cancer cells, then I've still got a problem. This is what "positive margins" means in the analysis of my removed prostate. If the outer edge (margin) of the removed prostate is positive for cancer cells, then it is likely they are also still in the unremoved tissue and further treatment - radiation therapy, in this case - is called for. I knew all of this from my original consultation, I guess; but the emphasis for months has been on "we remove the prostate and cure the cancer!" and it was a little weird to be told/reminded that I may have to go through another involved/invasive procedure at some point in the future. Oh well, like I said: the story goes ever on...
- Coming out of the anesthetic and then getting an occasional self-administered dose of morphine made the first evening/night a bit weird. I believe I was reasonably aware and I think I remember pretty much everything, but I just couldn't keep my eyes open. I was not thrilled with the woozy, out-of-control experience. Once I realized that the morphine contributed to that, I decided to totally stop using it. (I didn't really need it, as the discomfort was minimal.). When I woke up the next morning (9 December), I thought, "Ah, now I'm really awake!"
- On 9 December (the day after my surgery), the registrar (essentially co-surgeon or assistant surgeon) for my operation stopped by and said that everything went swimmingly. I think that's probably true, but I also thought "Well, of course you're going to say that...". She also said that I would probably be discharged the next morning.
- However, despite 9 December being a pretty good recovery day (in that I was able to get out of bed and walk), on the morning of 10 December my blood pressure dropped low again and I got a bit dizzy when I tried to stand. My blood pressure is typically lowish, but it dropped down even lower than usual. So the doctors decided to keep me for another day for observation. That was disappointing and frustrating, as I was planning to go home. However, in hindsight, it was probably for the best. That was not a very good day, though, with me just able to lie in my bed.
- 11 December was much better. I slept well the night before, I felt much better in the morning, my blood pressure returned to normal-ish, and I was able to walk well enough. So I got to go home!
- In typing the above, it sounds like I had a lot to complain about. That's not really true, though. The above points are just some of the key items I had to think about. In general, I was pretty impressed with the professionalism and competence of the many medical professionals that attended to me. It's just that recovery in general, and hospital stays in particular (when you are, after all, the most unwell) are not typically fun experiences.
- It was great having Ann, and often Zuperfliegen, come visit me, of course. It's probably just as well there weren't other visitors, though, as it was a shortish hospital stay and I was somewhat wiped out/occupied. A "Big Thanks!" to Scrabblette for watching Zuperfliegen on several occasions (and posting fun pictures on Facebook) - and to the several others who volunteered, but didn't get the chance! (Popular boy, that Zuperfliegen.)
[UPDATE THAT I ADDED LATER: The day after I posted this, I got some good news. See my next post for the details!]
OK, the rest of this post is going to talk about my penis. I've learned from previous posts that some of my Gentler Readers may think it's inappropriate for me to write, or at least for them to read, such things. If that sounds like you, then you should stop reading NOW.
No, seriously, if you think you might be offended or disturbed, then "Thank You!" for reading to here, but please stop NOW!
So, pretty wimpy of those other readers, eh? Mostly just kidding; I think in most cases people shouldn't read things that disturb them. But it seems silly to talk about removal of one's prostrate without talking about the penis. It's not the loss of the prostate itself that is the issue; it's the effects on the rest of the body.
- The urethra passes through the prostate. So my urethra had to be cut and then reattached. While that heals, I have a catheter (tube) running through my urethra from the bladder through the penis to an urine bag strapped to my leg. In a way, it's convenient, in that it avoids any incontinence. But, mostly, the idea, sight and feel of it is unsettling and, like just about every man who's had this operation, I'm very much looking forward to tomorrow (15 December), when it will most likely be taken out and I can return to normal-ish.
- Of course, the next question is "What's my new normal?". That is, once the catheter is removed, I get to find out how much incontinence is a problem. I'm hopeful, because I've been doing my pelvic floor exercies for months, that the problems will not be severe and that they will be short-lived. But I suspect that there will be an adjustment period, at the least, and I'll be using pads for a few weeks now. They're basically the same as "sanitary pads" for women, with slight modification for men's anatomy. Workable, but not the most comfortable or dignified things to wear. (sigh)
- Once I get started on that, I then have to start looking at getting my erections back. With the nerve-sparing surgery, I should have an excellent chance of that happening in 6-12 months (or maybe a little longer). The issue is that the nerves surrounding the prostate are the ones that signal the body to send blood to the penis to create the erection. Those nerves are currently in a state of shock (metaphorically) and need those months to recover. In the meantime, I need to produce erections through other means to keep the spongy tissues from scarring through disuse. So the plan is to use Viagra, or some similar drug or some other treatment that produces erections, to periodically keep the system active while the nerves work out the re-wiring of their purpose.
Hey, thanks very much for reading so very much about my somewhat humble life and my thoughts and feelings about it! I hope that something here has been useful or entertaining or otherwise meaningful for you.
So far, it is going well, in that I am able to get around on my own - albeit slowly and carefully - and there is almost no pain (just some discomfort from having an incision across my abdomen). Every day I have felt a little bit better and I remain basically hopeful and optimistic about the future. I hope that I am now "cured" of my prostate cancer - because we have removed it all from my body - but will probably not know anything more definitive until my follow-up appointment with the surgeon/urologist in about six weeks. The story goes on...(as always).
It has taken me three days of being back at home to finally get this blog entry written. That's partly because I have been focusing strongly on just relaxing/recovering and keeping up with my medications and post-operation procedures, and partly because, as you already know, it takes me a long time to actually get anything composed/written (sigh). As usual, my apologies for the delay (if you were waiting for a post-surgery update).
So that's pretty much the main news. The rest of this post is Other Notes about my time in the hopsital, my condition, and possibilities for the future:
- On 8 December, Ann and I arrived at the hospital for my admission at 6:30 AM, as instructed. (Many thanks to Tee for getting up so early and watching Zuperfliegen so that Ann could attend!) I was taken into surgery at 12:30 PM! It turns out they have all the morning surgery patients come in at the same time - so they have flexibility if they need to shuffle the schedule - and I was apparently pretty close to the bottom of the list. So the most effective method for the hospital was for me to get up early and sit around for six hours? Perhaps this is a function of being treated in the "public" health system.
- Ann and I had been told that the surgery would be 2-3 hours in duration. But I came out of the anaesthetic around 6:00 PM, suggesting that it may have actually lasted about 5 hours! I don't begrudge the medical personnel this difference; I wanted them to be able to do whatever they needed, no matter how long it took. Still, it was a little odd, and it made Ann anxious that no updates were coming when she expected them.
- I got to see my surgeon/urologist shortly before being taken into the operating theatre. He was the first one I saw when I was initially referred to a specialist for my suspicious PSA levels. At the time of my surgery, I had not seen him for a couple of months or more. I asked him about the difference in the plan for my lymph nodes. Specifically: When I first saw him as a private patient, his plan was to remove my lymph nodes (for further analysis of whether the cancer had spread past the prostate), as well as do a nerve-sparing surgery. But when I thought I might have a "robotic" surgery done, I was referred to his collegaue, who thought my lymph nodes should not be removed, and I should not have a nerve-sparing surgery. The fact that the two experts held diametrically opposed views on these issues was unsettling! Then, when I balked at the potential cost of private surgery, they referred me to the clinical trial and I was randomly assigned to the first/original urologist and told that my lymph nodes would not be removed, but he would do the nerve-sparing surgery. So when I asked him about this before the surgery, he said the clinical trial has protocols it has to follow; and that there was probably a 2% chance that cancer had spread to the lymph nodes, but possibly a greater percentage of there being unwanted complications if we removed them. It all sounded to me a little like "we give you the answer that best matches the current version of the situation". Which is potentially problematic, but it does underscore the uncertainties that exist with cancer and surgery in general. And, ultimately, as the patient, you have to do the best research you can so you can make the best decision you can; and then it still comes down to putting yourself in the care of the surgeon and hoping/assuming/believing that he or she will do the best they can and that will be enough.
- The surgeon also casually mentioned that I might need radiotherapy treatments later, because of the nerve-sparing surgery. um...WHAT? The idea is that the nerves being spared are wrapped around the prostate; so the surgeon leaves the outer layer of the prostate such that the nerves still have tissue to cling to and are not irreparably damaged. But if the remaining tissue has cancer cells, then I've still got a problem. This is what "positive margins" means in the analysis of my removed prostate. If the outer edge (margin) of the removed prostate is positive for cancer cells, then it is likely they are also still in the unremoved tissue and further treatment - radiation therapy, in this case - is called for. I knew all of this from my original consultation, I guess; but the emphasis for months has been on "we remove the prostate and cure the cancer!" and it was a little weird to be told/reminded that I may have to go through another involved/invasive procedure at some point in the future. Oh well, like I said: the story goes ever on...
- Coming out of the anesthetic and then getting an occasional self-administered dose of morphine made the first evening/night a bit weird. I believe I was reasonably aware and I think I remember pretty much everything, but I just couldn't keep my eyes open. I was not thrilled with the woozy, out-of-control experience. Once I realized that the morphine contributed to that, I decided to totally stop using it. (I didn't really need it, as the discomfort was minimal.). When I woke up the next morning (9 December), I thought, "Ah, now I'm really awake!"
- On 9 December (the day after my surgery), the registrar (essentially co-surgeon or assistant surgeon) for my operation stopped by and said that everything went swimmingly. I think that's probably true, but I also thought "Well, of course you're going to say that...". She also said that I would probably be discharged the next morning.
- However, despite 9 December being a pretty good recovery day (in that I was able to get out of bed and walk), on the morning of 10 December my blood pressure dropped low again and I got a bit dizzy when I tried to stand. My blood pressure is typically lowish, but it dropped down even lower than usual. So the doctors decided to keep me for another day for observation. That was disappointing and frustrating, as I was planning to go home. However, in hindsight, it was probably for the best. That was not a very good day, though, with me just able to lie in my bed.
- 11 December was much better. I slept well the night before, I felt much better in the morning, my blood pressure returned to normal-ish, and I was able to walk well enough. So I got to go home!
- In typing the above, it sounds like I had a lot to complain about. That's not really true, though. The above points are just some of the key items I had to think about. In general, I was pretty impressed with the professionalism and competence of the many medical professionals that attended to me. It's just that recovery in general, and hospital stays in particular (when you are, after all, the most unwell) are not typically fun experiences.
- It was great having Ann, and often Zuperfliegen, come visit me, of course. It's probably just as well there weren't other visitors, though, as it was a shortish hospital stay and I was somewhat wiped out/occupied. A "Big Thanks!" to Scrabblette for watching Zuperfliegen on several occasions (and posting fun pictures on Facebook) - and to the several others who volunteered, but didn't get the chance! (Popular boy, that Zuperfliegen.)
[UPDATE THAT I ADDED LATER: The day after I posted this, I got some good news. See my next post for the details!]
OK, the rest of this post is going to talk about my penis. I've learned from previous posts that some of my Gentler Readers may think it's inappropriate for me to write, or at least for them to read, such things. If that sounds like you, then you should stop reading NOW.
No, seriously, if you think you might be offended or disturbed, then "Thank You!" for reading to here, but please stop NOW!
So, pretty wimpy of those other readers, eh? Mostly just kidding; I think in most cases people shouldn't read things that disturb them. But it seems silly to talk about removal of one's prostrate without talking about the penis. It's not the loss of the prostate itself that is the issue; it's the effects on the rest of the body.
- The urethra passes through the prostate. So my urethra had to be cut and then reattached. While that heals, I have a catheter (tube) running through my urethra from the bladder through the penis to an urine bag strapped to my leg. In a way, it's convenient, in that it avoids any incontinence. But, mostly, the idea, sight and feel of it is unsettling and, like just about every man who's had this operation, I'm very much looking forward to tomorrow (15 December), when it will most likely be taken out and I can return to normal-ish.
- Of course, the next question is "What's my new normal?". That is, once the catheter is removed, I get to find out how much incontinence is a problem. I'm hopeful, because I've been doing my pelvic floor exercies for months, that the problems will not be severe and that they will be short-lived. But I suspect that there will be an adjustment period, at the least, and I'll be using pads for a few weeks now. They're basically the same as "sanitary pads" for women, with slight modification for men's anatomy. Workable, but not the most comfortable or dignified things to wear. (sigh)
- Once I get started on that, I then have to start looking at getting my erections back. With the nerve-sparing surgery, I should have an excellent chance of that happening in 6-12 months (or maybe a little longer). The issue is that the nerves surrounding the prostate are the ones that signal the body to send blood to the penis to create the erection. Those nerves are currently in a state of shock (metaphorically) and need those months to recover. In the meantime, I need to produce erections through other means to keep the spongy tissues from scarring through disuse. So the plan is to use Viagra, or some similar drug or some other treatment that produces erections, to periodically keep the system active while the nerves work out the re-wiring of their purpose.
Hey, thanks very much for reading so very much about my somewhat humble life and my thoughts and feelings about it! I hope that something here has been useful or entertaining or otherwise meaningful for you.
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