Through personal experience I've been learning about cancer in men, and what I've been learning has been surprising to me. My objective in sharing these stories is to have other men think about such things and not be as surprised should they ever have to deal with these concerns. I sincerely hope this is considered helpful to readers.
Prostate Cancer – 2005/2007
Breast Cancer – 2002/2003
Links cited in the text below:
2010-10-27 - Doctor says "you're cured!" Details below.
My father passed away December 2004 at age 72 and his prostate was so full of cancer that it had already spread to his bones. There was enough that it probably started up in him in his late 40's or early 50's.
Around when I turned 40 I started bi-annual PSA (prostate specific antigen) tests and digital prostate examinations, with PSA levels going up and down, but nothing triggering any alarm bells. My latest reading this year was only 2.93, which is not out of the normal range, but is a bit high within the normal range.
Put both of these together, though, and my urologist strongly suggested in early June 2005, that at my age of 47 I have a prostate biopsy, which was performed July 14. Thankfully, it was not a very painful experience (though it was very uncomfortable), and I stopped seeing blood after about 3 to 4 weeks.
I got my biopsy results this morning, August 19, and I do indeed have malignant prostate cancer. But not much and it is at the very earliest stage. Some cancers grow very very slowly, but given my father's experience, we are assuming this malignancy is probably more aggressive. The Gleason score for the mass is 6 (which is just below worrisome, but high for not being worrisome), and only 4mm of cancer was detected in one 14mm core of the 10 core samples that were done in the biopsy.
Having been thinking the worst ever since the biopsy was scheduled, we were well enough read that we decided immediately to choose to have a radical retropubic prostatectomy to remove the entire prostate gland. This is scheduled for January 2006. I won't be traveling from that point until at least mid-March 2006, but will be able to convalesce at home and keep up my work remotely as best I can. We also decided not to use newfangled robots or even laparoscopic surgery, but rather open surgery (from the front: retropubic) which may take longer to heal but will give the surgeon more hands-on information for any last-minute decision making. I'm feeling very confident my surgeon is more than capable to handle this, and we are pleased with our interaction with him so far.
Regarding radiation and hormonal therapies, my objective is to get this cancer out of my body as quickly as possible without engaging lengthy processes and testing and monitoring and whatnot. Removing the prostate should also remove any future doubts.
Some have questioned why we are waiting so long to have the procedure done, but given the small size and moderate rate of growth of the mass, we have the luxury to wait and January fits our schedule better for both family obligations and client obligations. And it also means I will have an excuse not to pick up a snow shovel.
Lots of reading to do; I'll post links I find useful. For now it is just sinking in.
I think this is good evidence for early testing for men in their 40's and, of course, I would highly recommend it for every man.
We had a very successful meeting with the surgeon, the second after the diagnosis and the last before the actual surgery. The surgery is still scheduled for January 10, 2006 at the General Campus of the Ottawa Hospital. I'm now scheduled to go in for the hospital orientation the week of December 12, then banking blood the week of December 19. I have dietary requirements and a course of antibiotics and preparations to take in the two days before the procedure. As with the biopsy, I will have a large course of antibiotics for the surgery because of my mitral valve prolapse.
We were more than reassured with our choice with our doctor and to stay in our home town for the surgery. We've been reading many books and videos and are now more than ever comfortable going with the "gold standard" of a retropubic radical prostatectomy. Unfortunately, some books have been very depressing with horror stories of long and awkward recovery times and dire predictions for success, but thankfully most of the books have been very optimistic and supportive.
I actually managed to ask the surgeon a question he's never asked before: "Will I have to remove my navel ring?" He was dumbfounded and at first didn't think I was serious. He took time to consider the answer (since it was something he'd not been asked before) and concluded that, yes, I would have to remove the metal and go into the operating theatre without any metal on me because of the electrical currents that have a role in the surgery. Also, there is a small chance that the incision may have to go all the way to the navel and it might then get in the way, though he didn't think this really would be necessary in my case. I can replace the ring shortly after the surgery in hopes of keeping the hole from closing up. We actually got quite a good laugh out of the episode, and I felt it helped me distinguish myself amongst his large patient base, which worried me that I would be "lost in the crowd" (he is surely a very busy doctor).
He had solid pat answers for every other question we had about logistics and clarifications of the materials we've been reviewing.
The books are not allaying any fears of the incontinence side effects. These seem to be inevitable, and I would consider this my biggest worry. It happens I've been doing Kegel exercises for many years, so I'm in good practice in this regard which will hopefully be helpful when the time comes.
Nothing to do now other than wait.
What not to read: Man to Man: Surviving Prostate Cancer, Michael Korda
I had the unfortunate experience today of telling a gift giver and good friend how bad the book they bought me to cheer me up and support me in my concerns about prostate cancer actually was. Only read this book if you want to hear how horrible recoveries can go. My doctor was telling me that I'll be farther along in 8 weeks than the author of this book relates 9 months after his surgery. His story of deciding to travel to a more reputable place than staying local, the awful trip home, and the unfortunate experiences during an incomplete recovery were all so very depressing that my wife and I were laughing at what the author had to say (our good friend bought the audio cassette edition for us to listen to in the car). The book is incredibly self-centered and uninformative and focuses more on the author "look how bad it was for me" than on the experience from which the reader is supposed to learn. It sounded like an exercise in self pity.
But my friend seemed to appreciate that I was honest with him. I offered to let him listen to his own gift with the proviso "this is what we hope won't happen with us".
The hospital called today telling us for the first time that I had an appointment to bank blood the week before the surgery. This was news to us and we had already made unchangeable plans for that day for our own preparations for the week in the hospital. This has been a real scramble to get everything resolved.
From our October appointment we believed we had everything set. An appointment for hospital orientation is set for December 12 at the General Campus (where the surgery is happening). An appointment for banking my blood (in case a transfusion is necessary) is set for December 20 at the Civic Campus at the Blood Services department (the Ottawa Hospital system spreads its services over three campuses). Our surgeon told us we could make our own plans for the week before, and his assistant didn't indicate anything more would be needed.
So imagine our surprise when the hospital told us "your appointment is January 3 to bank the second pint of blood". "What appointment? We weren't told we would need to be there! We have other plans that day that cannot be changed." We asked why they didn't tell us any earlier and they informed us that they were used to dealing with old people who couldn't handle a lot of information at once so they doled out the information in small amounts so that old people would understand what was happening. We said that was totally unacceptable to us as we are used to booking our lives many months in advance (for example I'm planning to be in Europe and Korea in May 2006).
So, now with only 5 weeks to the surgery and Christmas holiday closures at the hospital we have to squeeze in a new appointment to replace the one they made for us without telling us. At least a week is needed between blood-banking appointments. A new appointment is now made for this coming Monday December 12 at the Civic Campus, the day of my orientation at the General Campus. They will try to take both pints out of me the same day ... apparently they have a pumping machine to do this where if my body can handle the machine they will replace the blood they take from my system with another fluid of some kind to reduce the shock to my system. If successful I don't have to return December 20, but if not then the appointment on the 20th stands.
I now have to cancel and rebook the plans I already had for the afternoon of the 20th. It has become our problem and not their problem.
Lesson learned: be sure to talk with all parties concerned regarding the complete schedule of appointments before the surgery so that you can make your own plans without conflicting with any hidden plans.
Both of my pre-operative hospital visits are now complete. On the 12th we went to the General Hospital campus for orientation and the Civic Hospital campus for an autologous blood donation (banking my own blood in case a transfusion is needed); today (20th) was my second autologous blood donation.
Orientation involved meeting with the anesthetist and the operating room nurses to answer both general and specific questions (in both directions) and get our bearings as to what, where, when, how and why. Thankfully, every lineup was short and we were finished in only 90 minutes, even though four hours were put aside in our schedule based on the advance arrangements.
The day before the surgery we will get the call of the time of day we have to show up, and I'm to show up with only the clothes on my back, a spectacles case, and my autologous blood donation cards. My wife can have everything else, but I'm not to have anything else on my person.
Regarding my daily medicinal routine, I'm to stop taking vitamin E two weeks prior to the surgery date, and then no ibuprophen or aspirin three days prior (but acetaminophen is acceptable). I gather daily multivitamin tablets are probably okay, but I'm just going to stop the three days before as well. I had forgotten to bring in the bottles of my daily vitamins for them to analyze, even though I was asked to do so when the appointments were made, so I recommend you don't forget as well.
Here's what I'm to expect regarding the operation: I'll be taken to the operating room and before being put to sleep will have a spinal anesthetics administered with a very fine needle containing a local and a narcotic. This goes into the fluid-filled sac off the spine and will linger for about 24 hours. The surgery is expected to take 3.5 hours and I will be paralyzed for only a few hours (if that) afterwards without feeling or control of my legs. Apparently it is thought this reduces both the stress the body undergoes during the surgery (thus reducing the blood loss) and the need for pain medications after the surgery. I asked if anything is different because of my age and the thought was I might need more anesthetics.
I'll have an intravenous feed from before the operation because of the antibiotics needed for my mitral valve prolapse. The catheter is inserted through to my bladder after I'm asleep and I'll have that in for two weeks.
I also discovered that morning the "blue butterfly" needle for taking blood for tests: with a long narrow tube connected to a fine needle with a blue butterfly-shaped plastic holder at the back end of the needle. After the nurse painlessly put the needle in my arm, she was able to move her end of the long tube as much as she needed to put samples into various sample vials without my end of the needle moving whatsoever. All of the motion stayed at her end of the tube. It was pain-free for the entire extraction. I'll be asking for this in the future when going for blood tests.
The first autologous blood donation was a non-event. Although the prick hurt (a 16-guage needle!) because a small needle was apparently too small that it would have "damaged the blood cells". Nevertheless I gave up a unit of blood in 7 minutes (typical range of 5 to 15 minutes) with no ill effects. My hemoglobin was 15 (public average is 12.5 and the nurses rarely see anything over 17) before the donation and the nurses estimated it might drop to 14 immediately afterward (though it wasn't tested); I was told that the hemoglobin measures the ability for the blood to carry oxygen. I had a couple cookies and some juice when done (apparently the sugars help) and went on my way able to walk and drive and felt nothing bad at all. This was a new event for me because I'm unable to donate blood (as a child I had jaundice and as an adult I lived in Britain for four months in the late 1980's, long enough that the Canadian blood system won't accept my blood for donations).
Voluntary donations are at a minimum 56 days apart for the blood to recover enough to give up another pint. I had only 8 days before my second unit was taken. I was told to take 300mg of iron (ferrous sulphate) twice a day until three days before the surgery. I was warned this would darken my stools and constipate me so I also have to supplement with fiber. I was also told that the ascorbic acid in orange juice helps absorption of the iron, so I'm taking my pill with orange juice with a fiber additive each time. BTW, I asked what the difference was between "a pint", "a unit" and "470ml" of blood was, and apparently they are all interchangeable (though it is a US pint, not an imperial pint of 570ml). And that amount represents about 1/10 of the blood in a typical person. Oh, there was a programme underway studying the effects of removing 2 pints of blood at once (giving more of a shock to the system, but the system apparently bounds back even stronger), but there was a minimum weight restriction of 150 lbs and I only weight 138 lbs so I did not qualify for the clinical trial.
The second autologous blood donation today did not go nearly as well. Although the nurses did have evidence I was taking my iron pills in that my hemoglobin today was 15.1. First, the same right arm was started as last time, but it apparently immediately collapsed and no amount of painful fishing around could get the blood flowing, so I had to be pricked in my left arm (with that very big needle!) as well but thankfully blood flowed immediately from that. About 5 minutes in to the donation I started feeling lightheaded and I mentioned it (apparently it was good to mention it and that some people don't say a word when they should). It quickly grew worse and I started getting nauseous. The nurses said they'd have to stop and give up and I'd have to come back (which I was *not* interested in doing) so I took some deep breaths, they adjusted my posture, turned on a fan, and I hung on for the last two minutes until the machine registered the full unit. Finally they removed that gosh-darn needle, and it took me a half-hour to get enough strength back to walk out of the hospital. I was instructed not to drive for the rest of the day (though I felt strong enough after about three hours).
This was my first hint of anything out of the ordinary and my first scare that perhaps I'm not going to be strong enough to handle the post-operative care. Up until now every prod, poke and prick was easy to handle and I thought everything was going to be a non-event. Now I'm not so sure, but I'm going to head into this as optimistic as possible.
I guess I'll find out three weeks from today!
Today's preoperative preparation went well, but not without unexpected pain. It was supposed to be simple. I was to have a normal breakfast, start pill antibiotics late morning (Flagyl and Cipro), then a cleansing bottle of Magnesium Citrate (300ml) to flush out my digestive track. I ate a large breakfast, larger then usual, and breakfast lasted so long that I didn't have very long before taking the cleansing solution. It took almost three hours for the solution to begin its job, but once started, it was very painful "high" in my intestines, though not at all bad "low" down. So, my recommendation is not to have a large breakfast, or just to have it early so that you get time to break it down before taking the cleansing solution. Oh, another suggestion is to use a warm washcloth instead of toilet paper because you'll be visiting the toilet a helluva lot and by the end of the day I was in more pain there than from the movement of the food. I used an antibiotic cream to soothe that pain.
We got the call about 17:00 that the surgery was scheduled for noon tomorrow, and to show up around 10:00, and the weather is good, which is great news because we don't have to fall back to a hotel stay next door so I get to sleep in our own bed and take a shower in my own .
The day started very well and we arrived only 5 minutes late (Because of parking! Never underestimate how crowded a hospital parking lot can be!). At check-in they took a blood test and I changed into the required gowns (including thrombosis stockings) and waited until about 11:20 before getting on a gurney. I was rolled to the surgical ward and waited another 20 minutes outside the operating room. First the nurse asked me questions and then the anesthetist asked me different questions. Lots of checking and rechecking that the records in their binder matched me.
I was wheeled into the operating room, which was cooler than the hallway, and transferred to the operating table. To distract me from the needle pricks I was asked by the nurse about my profession, and the anesthetist picked up on the conversation and he and I talked about Java and XML while I was lying there on the operating table. Very surreal.
In contrast to my biopsy, this time my IV was started after a local anesthetics, so I only had to endure the small local (a slight burning and no pain from the prick). Another difference from the biopsy where the IV was in the back of my hand, I specifically requested that (if possible, these things are never guaranteed), that it not be in the back of my hand. It couldn't first go in the upper arm because once it doesn't work you can only go up the arm and not down, so they put it in the side of my wrist and I can type just fine.
I then had to sit up for a needle in my back (they showed me the needle after using it rather than before; don't look at it before!) to put morphine in a spinal sack. Apparently, this is enough anesthetics that I wouldn't feel anything, but the policy is still to use a general "so I won't get bored" (though I'm guessing it is so that I don't interrupt with my questions!). He said "time to go to sleep" and poked the IV and I was out almost instantly.
I'm told the surgery took 2.5 hours and that I was in recovery at least 3.5 hours. It turns out I had problems breathing during recovery, and I was asked ever if I'd been diagnosed with sleep apnea. I have wondered if I've had this in the past as I've sometimes woken up gasping out of breath as if I'd been drowning.
I woke up in a real stupor, but the first I remember is my wife's face next to the bed. I'm told I complained about being moved to the bed. And apparently I was surprised a number of times that my wife was there. I thought she was there maybe 15-30 minutes but she tells me she was there 3.5 hours, so I was really out of it.
My wife tells me my doctor's manner was impeccable. He met with both of us after our arrival before my getting on the gurney, and then he met with my wife immediately after the surgery before I was out of recovery. He answered our questions thoughtfully and with great encouragement for a successful event. She commented to me that she witnessed several other surgeons meeting with families and thought ours was the nicest.
About the general anesthetics, I couldn't keep my eyes open when I was first coming out of it. It would take all my effort to open them, I could look out maybe two seconds, and they'd be forced shut again. This worried me, but apparently it is normal and I hadn't heard about it. Apparently I was quite angry at my inability to see.
No pain was felt, and I bade my wife good night when she left, then I was quickly asleep. Interestingly, I thought she had been there 15-30 minutes when, in fact, she was there over 3.5 hours, so I was quite "out of it".
I was pretty clear headed when I was awoken at 04:00 by the other patient in the room (hip replacement) packing and leaving for an early airplane. So clear-headed that I had trouble getting to sleep again. But still no pain.
I had a full breakfast at 08:50 and very much enjoyed it all (who said hospital food is bad?). Anyway, on my breakfast tray was a menu for tomorrow, with choices, and each choice numbered. Nobody coached me, so I thought this was just for my information, but my wife knew to tell me to circle my desired choice for each meal and, sure enough, when my tray was picked up she checked that I had made all my choices for my menu tomorrow.
Up until breakfast my only additional pain relief was a couple of acetaminophen tablets.
I met my doctor's residents (including the one who assisted with the surgery) and a few minutes later with the doctor. They said everything went very well, the only slight issue was that the prostate was slightly "stuck" to the colon, probably as a result of the perforations from the ten biopsy cores. Both nerve bundles were spared. I didn't need any transfusion during the surgery or recovery, even though my blood pressure apparently went quite low.
I told my doctor I was doing my leg exercises (not painful) and even my Kegel exercises (a bit painful) and he told me to hold off on the Kegel exercises until after the catheter is removed (something I hadn't been told earlier). Apparently I'm pushing myself a bit too hard regarding recovery.
At 13:30 I was given some heavier stuff in preparation for my first walk, and the walk went very well. Again, surprisingly well. From what doctors and nurses are saying, I'm exceeding all expectations on my recovery rate. Then again, this could just be up-beat encouragement for which they are trained, which has a lot of value in and of itself to the patient hearing it.
I am experiencing an uncomfortable and very ugly side effect which, apparently, is not something to yet worry about. The incision is 10cm long, starting 3cm from below the navel to less than 1cm above the base of the penis. The doctor said that with the incision needed to go so close in order to have room for the instruments. But, by being so close, body fluids are draining into the scrotum and the sleeve skin around the penis because the abdominal skin is not keeping stuck to the pelvis above the penis. While not exactly painful, it is very worrisome, somewhat sensitive, and totally ugly. I'm told that as the body's hydration cycles return to normal, the body will reabsorb these fluids, and to keep everything as elevated as possible to promote draining the fluids back into my body.
Now I do have an outside drain bulb with a tube leading from the surgery through a hole in the abdomen about 7cm from the incision, out to what looks like a clear plastic grenade. This is where the drainage is supposed to go, instead of the scrotum, and indeed I am getting some in there. It is regularly emptied and measured by the nurses and it isn't uncomfortable at all. There are a couple of sutures at the edge of the skin keeping the drain in place.
I then sat in a chair for the first time, and also did a couple of walks, lapping the halls while holding on to the IV trolley and my wife. The incision is getting a bit stiff, but I'm trying hard to keep my knees up so that I don't have problems with the stairs at home. I'm not doing enough deep breathing and regular coughing exercises as I'm supposed to. Thankfully I haven't had to sneeze.
Our son brought me Chinese food for dinner and it went down really well (though not with my roommate). I'm feeling quite normal, just slow moving. Nothing new was discovered during the evening: my blood pressure is getting back to normal, oxygen levels are high even without having the oxygen tubes, and pulse is strong. Having been keeping up with my hydration, the potassium-laced saline IV was removed (a great convenience to have it removed, so be sure to get started early with plenty of liquids). My wife left me late evening chasing me off my laptop in order to take the long 45min drive home.
Late in the evening just before going to bed, the night nurse coached me regarding the catheter and in a few swift motions strongly adhered an anchor to my left leg and then trapped the end of the catheter in the anchor to reduce the motion of the catheter where it enters. She didn't ask where I wanted it, she just swooped in and placed it where she wanted it, based on the orientation of my bed in the hospital room. My suggestion for you is to stop your nurse from doing this without taking the time to think about the best placement of the anchor for the long run. I've edited this a few nights after being home after realizing that in my home bed the best placement would have been on my right leg and I'm in my home bed with a catheter many more nights than in the hospital.
I only slept about 5 hours through the night, not because of any external stimuli (my roommate had gone home on an overnight pass so I had the room to myself) but because of having this whole experience on my mind. I had lots of reading material to keep me busy, and I actually insisted on my wife taking my laptop home so that I would not be tempted to use it, but I was so bored it is good I didn't have it there as I would have surely spent hours on it.
The residents and doctor again visited in the morning and congratulated me on my progress, all thinking that I should go home today as the hospital is the last place for a healthy person to be.
I need to tell future patients about some things to expect that I wasn't expecting. I had my first bowel movement this morning, which was very loose, but I wasn't warned of the pain level of the natural spasms going on in my penis that are very normal for any kind of movement down in that area. In fact, I have been aware all my life that the penis makes short changes in length throughout the day just as blood moves in and out naturally, and today I'm really noticing it. My pain level (on a scale of 1 to 10) has only been maybe a 2, but the spasms run that up quickly to between 5 and 7, which is the most I've had to experience in a very long time. Be prepared, but be reassured as this is merely an interaction between the bladder walls and the catheter, and sometimes the urethral sutures which get a bit "stuck". Something else unexpected was the emission of a blood/urine mixture around the outside of the catheter, again a helpful sign (if the amount of blood reduces over time) of the healing of the urethral sutures. I was coached by the nurse on the cleaning of the catheter where it enters the penis, because when the blood dries it becomes an irritant (something I learned with my navel ring) and it requires constant cleaning to prevent pain and infection.
I was then coached on the use of a leg-strapped "day bag" catheter, as up until now I've been using the high-volume "night bag". I was given some fresh supplies to take home, my drain was removed (no pain, only a slight tugging), and I left the hospital only 49 hours after having laid down on the operating room table.
The drive home was quite acceptable (as a precaution I moved up a notch and took two Percocet tablets instead of acetaminophen). There are two easy chairs in which I can sit quite comfortably, dangling my leg with the bag down below my abdomen, and my other leg straight, and propping up the scrotum to promote more draining back into my body.
It is taking some practice with the bathroom routines, balancing cleaning procedures and my movements around the room so as not to make a mess or hurt myself. I'm surprised how much planning I have to do to make sure I don't make a mistake and hurt myself. Without being coached, I realized that a quick way of emptying the leg catheter bag is simply to un-strap the bottom, leave the top strapped, place your foot on the toilet seat, and hold the bag out over the water. When done, all that needs to be replaced is the bottom strap. I do notice that the catheter almost always needs cleaning right at the tip of the penis.
Spasms are still as painful (possibly more?) than in the morning, but the emission around the catheter is getting more and more clear of blood.
Except for an hour-long middle-of-the-night episode of bowel movements and very painful spasms, I slept well during the two surrounding periods. This morning the spasms were not as painful, so I'm taking this as a sign that the pain should become ignorable soon.
I'm feeling otherwise almost totally normal, just moving slowly. Coughing still hurts, but thankfully I've not had a coughing fit, just a tickle in my throat a couple of times. I'm about to head outside for a walk since the roads are clear and the sun is shining. Snow is forecast for tomorrow so then I'll start using the treadmill purchased for use during recovery (I don't want to slip in the snow and hurt the incision).
Oh, regarding sitting, I cannot find any flat-bottomed chair that is at all comfortable, cushioned or not. The hospital chair and the car seat both had more support on the sides than on the bottom. In both of my easy chairs my weight is on my hips, not my bottom. At the dinner table the only "chair" I can use is the kneeling chair we got for my wife's back problems, as I can put my weight on my hips and not my bottom. I was not warned about this and I'm glad I was prepared, though I didn't realize I had to be so prepared.
I have an appointment on the 18th to remove the staples, and on the 23rd to remove the catheter. The hospital gave us a sterile staple remover in case the urologist allows me to have my GP remove the staples, thus saving us a long drive in to and back from the city, but my gut feel is to still take the drive in and let the surgeon do it so that we can ask each other pertinent questions about progress.
I'm getting stronger every day, but unfortunately the involuntary bladder contractions against the catheter bulb are as painful as ever, though thankfully short-lived. I'm surprised how different stimuli trigger the contractions, including bare feet on the bathroom floor, bare bottom on the toilet seat, and the sound of trickling water. A few times the pain is enough to make me feel light-headed, but once passed, it doesn't linger at all so I'm not about to take any strong painkillers just for those.
I'm managing on only a few acetaminophen tablets a day and my wife insists on one Percocet (a narcotic analgesic) each night at bed time (at first I didn't want to take any narcotic, but my prescription provides for up to 12 a day (!!) so taking only one shouldn't be a problem and this way I have very few if these nasties in the house). I'm back on daily multivitamins, vitamin C and vitamin E. I have a prophylactic antibiotic prescription for 14 days to help stave off urinary tract infections. I am not allowed to take ibuprophen as it apparently deters healing. The narcotics received during the operation and being taken each night are binding, so I'm daily taking Metamucil to keep the stools soft, and everything appears to be working just fine in that department. Finally, I'm not allowed to put any salves or lotions on the incision, but I'm just to keep it as exposed to air as much as possible to promote healing. I'm washing it and the catheter with an antibacterial soap.
The catheter anchor has proven over the days to become a bit of a pain (figuratively and literally) in that there is adhesive ostensibly to keep the end of the catheter in the anchor. With the many washings of the catheter, the adhesive breaks down a bit thus allowing the catheter to sometimes move up and down in the anchor. At times it "snags" and I can feel a pull on the bulb in my insides. Starting to twist and roll in bed now, twice in bed last night I got caught up in the catheter with some painful pulls and some bloody emissions in the morning. For tonight I have anchored the catheter end to the anchor with a simple elastic band, and haven't had any problems since doing so.
The staples came out this afternoon without incident and certainly without any pain. There were 15 staples along a 10cm incision. The staples were only about 6mm - 7mm across the top, with the two side prongs about 10mm at right angles into the skin, then the ends of the staples turned at the bottom ... just like a paper staple but longer in length. According to the doctor, the stapler works on much the same principle as a paper stapler, in that there is a bottom part placed under the skin when the surgeon closes the stapler in order to angle the ends. The surgeon just moves down the incision closing the next bit with another staple until to the end of the incision and then squeezes out the base of the stapler. No magic there. What I found interesting is that with the staples out, the holes that are healing are between 15mm and 17mm apart! That was a lot of skin bunched together into the staple!
So, how does the staple come out if there isn't anything to straighten the ends under the skin? Here is where it differs from a paper staple. The staple remover is an ingenious crimping device to deform the staple in the middle of the exposed bar, pushing the centre of the bar down and pulling up the sides of the bar into a V-shape. This deformation action pulls out the end of the staple along the elastic holes in the skin without tugging at the bottom of the staple because the staple isn't coming out straight.
I then asked about getting the catheter out today (five days early) and the surgeon convinced me to wait. I needed a lot of convincing as I had a horrid night last night with internal irritation from what feels like a golf ball stuffed up my rear end (the Foley catheter bulb in the bladder). The kicker for me was the question "what if it is too early and there is damage?" The answer is we go back in surgically all over again and repair the reconnection of the urethra, with all the attendant muscle repair and catheter use all over again from the start. I decided to put up with this for five more days. Apparently, until not long ago the catheter was in place for an entire month, then it was down to two weeks, and for me it will be 13 days, so I hadn't realized that 8 days really is pushing the envelope a bit too much.
Surprisingly for me, the involuntary bladder cramps had just about disappeared by today when I went in to the hospital to get the catheter removed.
We got a number of other questions answered by the surgeon, regarding some tenderness next to my pelvis (probably surgical repair, just wait), asymmetry in my abdominal muscles (will even out in time, just wait), performing exercises such as push-ups, chin-ups and crunches (no such exercise until 6 weeks after surgery, just wait), and whether or not I still need to take stool softeners (no). Lastly, in my research I read about the Cowper's Glands in the reproductive machinery that produce a small amount of clear sticky pre-ejaculate to prepare the urethra for semen from the prostate, and wondered if they were spared or removed; apparently because they are so deeply embedded in the sphincter muscles, they are almost always preserved as in my case.
The catheter removal itself was totally pain free, as all I felt was a tug. Using a syringe, the doctor removed the fluid from the tube connected to the inflated bulb in the bladder. He was careful to have extracted as much of the fluid as possible before taking off the slack, having me lay back, and then just pulled it out in one smooth motion. A weird feeling, but not pain. I was sitting on an open incontinence undergarment and it was closed up immediately. The doctor told me unequivocally that I would feel if I leaked at all and I could feel nothing when I stood up and left the hospital. We went shopping and to lunch and I thought all along that since I wasn't feeling anything I was going to be spared incontinence. No such luck.
I was leaking all the time and couldn't feel any of it because of the irritated urethra (which is probably why removing the catheter didn't hurt). I was totally incontinent all the time and I couldn't hold a drop in. I panicked a bit and rushed out to buy appropriate undergarments and pads, but during the trip home I started feeling the actual sensations and muscles again. At first I managed to hold in a few tablespoons worth of urine, but I could feel the muscles in use. I started drinking lots of water and for the first time in a week could feel the sensation of my bladder having something in it other than a golf ball. Within a couple of hours I was holding a lot more and able to start and stop the stream. I just drank more water to give it more and more exercise. Lots of trips to the bathroom, but by the late bed time (about 12 hours after removing the catheter), I was holding my bladder well and passing large quantities of urine with lots of control, though not without a lot of dribbling after.
Buying the undergarments turns out to have been a waste. My wife had the excellent idea when we got home from the store of putting a pad inside of the undergarment, that way the pad would catch most and the undergarment would catch the overflow and we wouldn't go through as many of the large and more expensive undergarments. It worked really well, as I was able to keep all of the leaking contained within the pads. The leaking was low enough that I decided to go to bed just with a pad in my underwear, not having to wear the bulky (and surprisingly noisy!) undergarment.
Last observation of today: my wife tells me my hair has taken a big jump in going white! Apparently around the time of the diagnosis there was a bit of a jump, but yesterday she remarked to herself that it had taken a bigger, more significant change at the top and back of my head where I cannot see in the mirror. We had quite a laugh over this as it was unexpected, though she tells me stress is likely the cause.
Success with using only the pads through the night! I got up three times in the night as my body is already signaling my bladder needs to be emptied, and the pads appeared to have only small amounts of dribble. I was emptying copious amounts from my bladder with good control of being able to stop and restart the flow. Interestingly, the bladder cramps have returned! I'm guessing that the muscles learned not to contract around the catheter bulb, thus removing the pain while the bulb was still in place. With the bulb no longer in place, those muscles are being used again in an attempt to empty the last bit of the bladder, and the familiar pain has returned.
Now it is only a matter of time and waiting and bladder-control exercises. I'm trying to do my Kegel exercises (though it seems to act sometimes as a pump, pumping out the dribble into the pad). The surgeon wants me to do 10 exercises during the day of 10 repetitions of 10 seconds holding with 10 seconds pausing. I'm drinking lots of water in order to get my body used to recognizing the signals and controlling the stopping and restarting of the flow when voiding. The dribble is very bothersome, but no longer worrisome as my confidence has returned with the main bladder control. I confess yesterday afternoon I was freaked out that I was totally incontinent as I had harboured private hopes that "it wouldn't happen to me". By bed time last night I was reassured and this morning I am now confident that this too shall pass (so to speak). The onus is on me now just to keep up with my bladder control exercises until they again become natural movements without conscious thought.
The exercises are finally paying off well and after two weeks to the day of removing the catheter (four weeks ago tomorrow since the surgery) the incontinence has almost disappeared, though I gather that "almost" is the longest stage of recovery from incontinence. It would seem to get better over two days, then backslide for a day. I was dry through the night from the very first night, which was encouraging, but then it took a long time to accommodate the everyday bending and stretching that would cause a surprise leak. From our research I am doing better than most, and I attribute that to trying to keep up the exercises, and for doing the exercises with my legs and pelvis in different orientations, rather than always having them in the same orientation.
The big news late last week is that my pathology report was faxed to us and I got the low-down on the cancer that was inside of me. It turns out the tumor had already grown to almost a full cubic centimeter (.981 cm³ to be precise; about the size of a sugar cube), so it was the right decision to have it removed when we did.
My next visit with the surgeon isn't for over two weeks, so it will be a while before I get the "official" word in lay terms, but I have a friend in the industry who happens to be a prostate pathologist in his day job and he offered the following "unofficial" interpretation of my results:
Subject: RE: Pathology report in hand Date: Fri, 3 Feb 2006 14:41:38 -0500 Hi Ken, Got it. I'll send you a more detailed explanation when I have a little more time, but bottom line is the pathology couldn't have been better! Low volume disease, but significant enough that you can be glad you had the surgery; lowest possible degree of extension (unilateral, limited to gland); moderate grade (Gleason 6); and all margins negative. That's as good as it gets! You can for practical purposes consider yourself cured. More later... John
Still many more months of follow on PSA and possibly other tests to ensure no cells have escaped the prostate and caught hold anywhere, but very encouraging so far.
Two big pieces of news to report today after my visit with my surgeon this afternoon.
First, the "official" word from my surgeon on the pathology report is that it is "exemplary", so I'm happy he is as confident as my friend about the outcome based on that analysis. Not much more to say about it; the visual evidence is that it was all removed. All that is left is a long series of PSA tests, the first one in the next 6 weeks, then again 6 weeks after that, then every three months for a while, then every six months for a while. This will tell us if anything microscopic escaped from the prostate.
Second, I have now been without any incontinence pads for a week. So it was 5 weeks and a day after the surgery, or only 3 weeks and 2 days after the removal of the catheter, before regaining my continence. I was tempted to report here on this last week when it stopped, but I decided to wait for a full week to make sure there wasn't any backsliding, and it has been just fine without any need for wearing pads. I gather for some men it takes months, and for a few men years, so I'm very relieved to have this now past me.
Talking with the surgeon, I asked about the difference between what I call the "holding back the flow" muscles (which are working just fine) and the "cutting off the stream" muscles (which I cannot feel at all). The reason I cannot feel or control the "cutting off the stream" muscles is they were taken out with the prostate! I wish I had known this so I wouldn't have kept trying so hard to get them to work and be disappointed when I couldn't cut off the stream quickly. Apparently with time my "holding back the flow" muscles are going to modify their behaviour to slightly accommodate my use of them in the finer control during voiding, but that now that I have only one set of muscles where I used to have two, it won't ever be the same.
One thing I did notice near the end of the incontinence is that different muscles are in play when I void standing up than when sitting down. If I only did it one way in place of the other then I wasn't progressing as much as I wanted. However, when I varied my posture then more muscles got working and I progressed more quickly.
This morning I had my fourth three-month follow-up visit with my cancer surgeon, Dr. Oake. Today's reading was, again, "0.0", or technically, "less than 0.02" which is the tolerance with which they can do the test. This guy is great and I've been very pleased with every aspect of his care since the diagnosis and through today. A lot more visits to come up over the years, but for now I can summarize the year that has just passed.
I'm hoping that by going into some of these details that others who have gone through the surgery will have something to compare with.
The continence has disappeared now that I know which way to sit and to stretch. After voiding I have a little extra work to remove most of the last drops without the muscular control to do so, and as I describe below, greatly reduced sensations. I notice there are times I can't even feel anything on the surface of the skin. But, now if I step out of a truck and stretch "the wrong way", or an unexpected sneeze triggers an undesired muscle twitch, I can usually feel that a small amount of urine has moved from the bladder to the urethra, but not out the end. It came with practice and I was so worried that it would not.
After a year the erectile dysfunction from nerve damage has not disappeared, but I am amazed at the pharmacological treatments available. Two months after the surgery I approached the surgeon about "Triple-P" injections to avoid having to use the headache-inducing pills Viagra, Levitra and Cialis.
"Triple-P" is a concoction of drugs with long names each beginning with "P" that are administered directly into the flesh of the penis by syringe injection:
This mixture, when in the blood stream, dilates the blood vessels directly producing a natural effect without using any nerves to do so. Two clinical tests at the hospital proved that it would work for me and the doctor prescribed a .20cc dose. The test doses were too small to make it full or to make it last until we got home, so we had to wait to get the prescription filled and the paraphernalia purchased before trying at home.
The very first attempt was a total failure. I think I pushed too hard with the needle as it was very painful (not like the pain at the hospital) and I think the end pushed into the urethra and the entire dose went to waste because it didn't end up in the blood stream. It also triggered anguish and angst as we were anticipating it so much. In retrospect, perhaps it was just nerves, so when you try this for yourself, really try to relax. I get the willies regarding injections at any time, though after 10 months it is now very easy.
The second attempt was a success. A total success. Within 15 minutes there were noticeable results and by the 30-minute mark I felt like a teenager. At the 2.5 hour mark I awoke to find that nothing had changed and I began to worry. I tried walking it off. I tried thinking it off by focusing on work. Nothing ... still at full attention (and getting a bit sore). At the 3.5 hour mark I started making plans to take myself to the hospital ... if an erection lasts four hours the state is called "priapism" and there is a risk of damage. Thankfully, just at that point I detected a change, and within 5 minutes everything was back to its normal flaccid unimpressive self.
This stuff cannot be used every night, but at most only every second night. It is also important to vary the injection location, left side and right, and up and down the length. Most of the injections do not hurt, but every now and then a nerve is hit and I'm amazed at the pain.
Over the months I've been able to reduce the dosage steadily down to .08cc in order to still get the effect, but not have it last so long. I went through two 4cc batches and gave up on the second one after four months (the directions are to stop using a batch after three months). We've learned a lot with the third batch, obtained the day before we left for some travel. The first six uses of the third batch were failures, four of them without any effect, and two with a partial effect and then for only 10-15 minutes. We upped the dosage through the six injections to .15cc still without success. Last night, in preparation for this morning's meeting with the surgeon, I used the full .20cc and ended up sleepless again with an erection lasting just over three hours, worried about having to take myself to the hospital to have the effect reversed. At the 3 hour 10 minute mark the effect abated on its own.
I talked with the surgeon about why there was the very wide range of effect from a single batch. I thought the batch was bad or ruined, but last night's evidence is clearly that it was not. The one difference we noted to him was that the hotel refrigerator was very close to freezing while our home refrigerator stays at about 7C/45F. From now on we'll adjust travel refrigerators accordingly. But the surgeon said that there are many factors and we can't just rely on temperature: if we have problems in the future it might be because of a bad or ruined batch, or the temperature, or the level of stress, or the level of arousal. Too many factors are in play to know why an injection doesn't work. Thankfully, if an injection doesn't work, it is acceptable to wait only 24 hours and not 48 to try again. He underscored it is not appropriate to "top-up" an injection immediately after if it doesn't work, even if it hasn't added up to the original prescribed dose.
The bottom line: if you have been putting off trying the Triple-P injections, talk with your doctor and give them a try. They are absolutely the best treatment of the treatments I've tried. Don't worry about the very momentary pain of actual injection, as it never lasts and may in fact be non-existent from time to time. It is worth it, contrary to what one might think just imagining it.
Unfortunately for me, though, over the year there is the disappointment that the orgasm sensations are only a quarter or less of what they used to be. That does not seem to be improving at all and the nerve damage related to the erections appears to be affecting the feelings as well.
I don't have any more tips yet for future patients, so until I think of something to add or clarify above, this is probably my last chronicle entry for a while. Check the timestamp on the bottom right corner of this page for the date/time of my latest update so that you'll know if anything has changed on the page.
Almost 18 months to the day after my surgery and I've received the first possible bad news of my progress (or lack thereof): a possible recurrence of the cancer in my body.
Every three months since the surgery I have been tested for PSA (Prostate-Specific Antigen). To recap some of what is above, prostate cancer invades prostate cells and uses the prostate cell's ability to reproduce itself to reproduce the cancer. But the "prostateness" of the cell is preserved by the cancer as the cancer spreads. A jump in PSA is one signal used by a cancer doctor to judge if a man might have cancer because the prostate does not itself usually grow that fast to trigger the jump. In January 2006 my prostate was removed, so the theory is that with no prostate cells left in my body, my PSA count should be 0.0 in every test. Every test has been reported as "less than 0.02" which is the best they can do given the tolerances of the test.
Except for this week's test.
This week a new testing methodology was used for the first time and the result was "0.02", not "less than 0.02". This would indicate that there are prostate cells in my body that are producing PSA. Since I no longer have a prostate, this would indicate the cancer escaped my prostate before it was removed and the cancer is still growing somewhere else in my body, continuing to replicate itself as invaded prostate cells, still producing the antigen as a good prostate cell is supposed to do. If the next test reveals a value of, say, "0.04", then this would be a confirmation. If the next test reveals a value of "0.02" then this might mean it is a byproduct of the testing methodology requiring no intervention.
The doctor noted to me that he has received a number of such results using this new methodology and we won't have a good idea of what is going on until another three months has passed and we get another test using this new methodology. I asked "just hypothetically" that if I do have a recurrence what would be in store? The answer is "pelvic radiation, but we'll talk more about that only if we have to." And if we do have to, he said there would be a lot of reading, research and contemplation to do before any such action is taken. "Just don't worry about it for now until we get the next test in three months time; it wouldn't be helpful to get another test right away."
In the mean time, the thought of a recurrence has been very distracting and disturbing because it is very hard not to think about it or worry about it. So I am immersing myself in work trying not to worry. And I won't have anything to add to this chronicle for another three months.
Just now got back from the hospital to meet with the surgeon for my three-monthly visit.
It turns out many patients over many doctors all had "elevated readings" when the hospital changed the lab that was being used for the testing (the change was done to save money). He and others were getting an abnormally high rate of possible recurrence all of a sudden.
When the doctors all questioned this and the lab re-calibrated the equipment, the readings went back to normal.
My reading is back to "<0.01" which is the equivalent of saying "undetectable".
So we are very relieved and glad the scare is over. It weighed heavily on my mind for a long time.
One more three-monthly visit, which will end the first two years of recovery, then I move on to six-monthly visits starting around February 2008.
In fact I graduated to annual visits after my first six-month visit, which was two years ahead of schedule. In my annual visit this morning I reminded the doctor that in 3 months is my 5-year anniversary of the surgery, at which point he shook my hand and said "Congratulations, you're cured!" He is convinced the consistent reports of zero indicate there is no more cancer. But, nevertheless, the annual checkups will continue for a while.
We talked briefly the last time and this time about "spray". I swear my bladder must be twice the volume it was before the surgery. On the plus side, this means I can "hold it" for a lot longer than I used to. On the negative side, I now worry I'm going to wear the paint off of the porcelain! The pressure from my bladder muscles pushes the flow against the small opening of the urethra and the flow looks and acts like that from a pressure washer. And it takes forever to finish voiding. The last time I asked if there was any way to reduce the force of the flow, and he said "no way; we work very hard to help people increase the flow; we aren't about to make surgical changes to reduce the flow". That makes sense. So I've grudgingly put up with it.
An interesting side effect of the pressure is that my urethra along the length and up to the opening has stretched in diameter because of the pushing that happens every time I urinate. The spray problem is limited only to the opening, as that has not increased in diameter as has the rest. I asked the doctor about "urethral stretching" and whether actively engaging in that would be a risk to any of the surgery. He could think of no problems whatsoever. So I'm going to try a home remedy of increasing the size of the urethral opening so that when I void there will be a bigger opening, no spray, and it should take a shorter amount of time to complete. I've ordered some stainless steel items designed to do the job and will start the lengthy process next month when they arrive.
There is limited information about breast cancer in males because it is a relatively uncommon problem. When it does occur, it seems to go unnoticed until it has advanced to a stage that is difficult if not impossible to cure. For this reason, men should be aware of factors that might place them at risk for developing the disease.
Jean Lynne, Men's Cancers, ISBN 0-89793-267-6
It is a helluva lottery to win.
A close friend
2003-04-01 - All clear! Details below.
I had thought my 2001 scare with the damaged prolapsing mitral valve was enough, having hurt myself going scuba diving while on the XML Geek Cruise in the Caribbean. It took about 8 months for that to completely heal and I've been off of heart meds since then.
I figured at the time "what more could be worse?"
I'm now seeing a cancer surgeon regarding breast cancer based on symptoms pointing to the condition, though unfortunately (fortunately?) no evidence can be found.
There is not a lot of awareness of male breast cancer. My objective in capturing this information on this page is to help raise the awareness of this problem so that perhaps others might recognize the symptoms in themselves to get a critically important diagnosis at an early stage.
In the sections below I summarize some of the reading I have done regarding the condition, and go into more detail about my own personal experience, including some graphic details that may not be of interest to all readers.
I sincerely hope this page does not offend anyone; I'm just trying to help raise the awareness of this condition. Though I had never in my own mind ruled out the possibility of men getting breast cancer, I certainly had not thought about it very much nor did it cross my mind I might be experiencing symptoms often associated with this condition.
Please read this carefully:
Male breast cancer most often occurs in the left breast, commonly appearing as a mass or a lump just beneath the nipple. This mass is usually in a fixed position, attached to the skin or the chest wall because of the small size of the male breast. Male breast cancer may also occur in the upper, outer quadrant of the breast or as a mass in the axilla (armpit). The mass is usually painless, unilateral (occurring on just one side), irregularly shaped, firm, and approximately 4 to 5 cm (about 2 inches) in diameter at presentation.
Half of men with breast cancer have disease that has spread to the axilla at the time the diagnosis is made. Seventy to 80 percent of all men have a discharge - often bloody - at the time of diagnosis. About one in five men with breast cancer have nipple and areolar abnormalities such as scaling, irritation, redness, or inverted nipples. These men are likely to have had symptoms for three to eighteen months, which is why male breast cancer is most often diagnosed at an advanced stage of disease. Gynecomastia (breast enlargement) is present in about a fourth of all cases, which can complicate the diagnostic process.
Jean Lynne, Men's Cancers, ISBN 0-89793-267-6
I went about 6 months with three episodes of bloody discharge from my left nipple before I brought it to the attention of my GP during my annual checkup. An appointment was made with a cancer surgeon and between the two appointments I had my fourth and heaviest episode, resulting in a 7cm circular bloodstain on my undershirt. Each episode lasted only about two or three days and I wrote it off each time as a simple duct infection of some kind, until the cancer surgeon informed me he had never seen such an infection. I experienced only very mild gynecomastia that takes concentration and comparison to even notice, so that didn't help indicate any problems.
Only after the visit with the cancer surgeon, researching this I found http://imaginis.com/breasthealth/nipple.asp and I realized I experienced all six out of the six "concerning problems" regarding nipple discharge. This page also states "Nipple discharge in the adult male is more often associated with a malignant condition than in the female.".
Had I known what to look for, I would have talked to someone immediately after the first episode. Now that you know what to look for, I suggest you start the ball rolling as quickly as you can to get it looked at, and don't write it off as benign until someone tells you so.
A friend passed along the following BBC links; apparently there has been a recent male breast cancer awareness campaign across the UK.
I've waited until today to create this web page and tell others, so that I would have the time to tell my family about the condition face to face during our annual Christmas celebrations out of town.
I'm now in the third round of diagnostics, unfortunately stalled in a "wait and see" mode. Even though I have experienced the strong indication four times, no physical evidence (e.g. tumors) can be found after two rounds of tests in November and December, even with numerous ultrasounds and mammograms. The discharge hasn't happened since October.
Since there are no tumors, there is no way to do a simple needle biopsy. The choice we were given is either "wait and see" or do a full disfiguring mastectomy and test the entire biopsy that is removed (leaving scarring and significant deformation). We learned this latest choice at the hospital when we met with the cancer surgeon mid-December.
We elected to wait. The next set of tests will be early April 2003.
Thankfully there is nothing critical at the moment, or the surgeon would have insisted on surgery, so we are still hoping it is just a false alarm.
I'm just back from the cancer surgeon this morning and based on there being no evidence of any emissions since October, I've been given the "all clear" and am no longer his patient. He has diagnosed the situation as mild Gynecomastia on the left side, and though the four earlier episodes of bloody emissions are not associated with this condition, he has deduced that must have been the relation given there is no evidence of anything else.
Needless to say we are relieved. I am being asked to continue to cut back on my formerly very busy schedule, as part of a holistic approach to my health, and have agreed to do so. After a while perhaps I can ramp it up a bit again, but for now I'm going to stick to only a few volunteer committees and focus on trying to generate some training revenue in the world-wide malaise of this training marketplace.
G. Ken Holman
$Date: 2010/11/01 12:26:19 $(UTC)