Posted 10/8/2007 8:35 AM (GMT -6)
Here's a joined together version of various posts that were made during my Journey so far. It may read a little disjointed in a few parts, but I wanted to include all the important stuff, even if it had creeped out into other threads. I had a Gleason 3+3=6 prostate cancer which was removed by a conventional retropubic prostatectomy- removing the 110 gm. prostate, 4 lymph nodes and the seminal vessels using nerve sparing procedures. A right hernia was repaired at the same time.
It begins on 8/23/07 with my first post, shortly after I met with my Urologist to review the biopsy results which confirmed I had prostate cancer. I will add onto the end of it, as things progress:
Hello, everyone. I've spent the past 3 days reading all the posts back 6 pages,
which is what- a couple weeks here? I thought I would share my 'journey',
now that I've joined the club no one wants to belong to., as someone here said.
I'm moderately high BP middle aged male, married for 38 years, retired and cruising
along enjoying life. I have had a few episodes with prostate
infections 8 to 10 years ago. My PSA level has floated around from
3.8 to 4.2 for probably 10 years now. I have monitored it, along with
my other blood tests each six months.
In April, my family doctor tested again and it came back 7.6. He
immediately referred me on to a Urologist/Surgeon who specializes in
this disease and has a high surgical experience rate. He puts me onto
a 3 week high dose Cipro (?) antibiotic and anti-inflammatory course,
followed by 3 weeks of rest to allow the drugs to leave my system,
then another PSA test. This recheck came back 6.7.
During the initial exam with the DRE he
commented that my Prostate was grossly enlarged and this 'might' be
the cause of the elevated PSA, hence the antibiotics try first.
Nothing was felt digitally during the DRE.
When the recheck of 6.7 came back, he did a biopsy in July.
He got 16 samples, (the last 6 were painful, Novacaine or not, let me tell you).
The ultrasound mapping revealed a 76 cc. Prostate. Pathology reported 3
cancerous cores , top to bottom, center of left lobe, 5 % involvement,
Gleason 3+3:6. Estimated TC1. He set up an appointment for Reporting
and Consultation 3 weeks later, July 30th.
During this consult, he reviewed the results of the biopsy, including
how it was interpreted ( a team of 4 Pathologists, 2 from the same
office, 2 from another group) individually looked and scaled it GS
3/3:6. He said it probably had been developing for a year or 2, so it
was caught early. He said that all indications pointed to it being still
enclosed, and the 5 years cancer free formula was 80% to 100%
chance of cancer-free for this type situation. He gave a through review
and instruction of the various options of treatment, really detailing the
good and the bad of each.
I had spent countless hours on the computer reading and
gathering others experiences and information, so I was able to follow
along well, plus he had given me plenty of booklets and such at the
biopsy, in case. At the end of it all, he asked me to consider it
all, not to rush into a decision and to let him know how I wanted to
proceed. I made a decision for conventional Radical
Prostatectomy. He wanted me to wait 3 months to do it, for biopsy
healing and such, but I managed to get him down to 7 weeks. I have
plans for life this winter, and didn't want to wait that long. It'd
been fine with me to have done it the next day, as far as I was
concerned. I am scheduled for the surgery Sept. 24th.
I considered radiation and the robotic RP.
The length of time and uncertainity of radiation
and the distance to travel, plus the large size of prostate for robotic,
which might have made removal of all troublesome, was the main
determining factor for choosing conventional, hands on open abdominal RP.
In the meantime, I am learning patience, on a diet to lose a few pounds, have
begun a more rigorious exercise program, with weights and abs workouts
added. I've been doing Kegels since June. He said these things would
speed recovery and even make the surgery easier for both of us.
Also, while he has me there, he will repair a moderate hernia on the same
side as his planned incision line. So, I get a 2fer....lol
I'm slowly accumulating the things I will need for after surgery,
in hospital and at home care, using several lists I've found on the net,
plus jotting down things as I think of them. It's so miserably hot here
now that I am holed up inside waiting for a break in the heat or winter,
whichever comes first. I got plenty of time to read and psych myself
up for the surgery.
I have read lots of peoples stories in the weeks since I first started
with this, and must say that I am surprised by my reaction, as opposed
to some peoples strong reaction to their disease. I have been suspecting
that at some point I would develop prostate cancer, what with the high
PSA's over the years, and as soon as the 7.6 was reported, I wasn't surprised.
It did give me a little jolt, I will admit. I pretty well knew what it meant.
My family doctor and the Urologist suspected the same, I came to find out later.
I may be denying a lot, but I am approaching this as a serious health
situation, but one that can be fixed reasonably easy, as long as it remains inside the
Prostate and it is all removed with the surgery. Pee control and later,
erections will be something to concentrate on, when the time comes.
I won't know with any certainty until it is over and the post-surgery pathology is done
on what is removed, of course. If it hasn't remained encapsulated, then that
opens a whole new arena for me that I will have to begin dealing with.
I'll be asking lots of questions from all of you then, count on it.
My wife is supportive, and is taking it all good so far. She tries
not to worry, but I overhear her at times talking to family and
friends, and can tell she is troubled by all this, but she seems to be
adjusting to the new world we live in ok. She said she will be ok as long
as I keep it together. She says her worst time will be waiting during the surgery,
and she will relax more when it is complete and I am on the way to recovery.
We have discussed the life style changes that may be in the future for us as a couple,
and we will face them with whatever we need, as we come to them.
I hope this isn't just whistling in the dark for both of us. We'll find out soon enough,
won't we? We have a healthy reasonably (for our age) active sex life now and
hope/expect to have the same afterwards. If it must be in some altered form,
then so be it.
The evening before surgery I am calm, and hungry. I am not anxious, scared or in any way upset. I am a
little amazed at my reaction to the forthcoming event. I have been waiting and preparing for this for 4 months now and am pleased the time has finally arrived.
Surgery and the first few days Post Surgery:
As you can see, I made it though to the other side. The surgery went well, with a few surprises, but good ones. The doc said my prostate was the largest he had ever removed. He had to make a larger incision and do much more cutting of the supporting structures, plus I did get a right inguinal (sp) hernia repair, which has made it 3 times as sore. lol Good news was the urether and the bladder neck matched prefectly and was stitched easily, with what he hoped was little likehood of strictures later. Also, he said the external spincther was already closing and trying to control the flow of urine while they were still stitching it onto the bladder neck. The kegels and stairs must have done some good...Unless he is blowing smoke, I have an excellant chance at full recovery of function. My recovery will be a little longer and more painful than I/we expected, but that's ok. The removed gland showed no sign of breaking through, was smooth and still healthy looking, albit huge size. 110 grams, 2.2"x2.2"x1.75" size. He said it was the size of a small orange, rather than the normal walnut. I forgot to get the cc size of it. Ultrasound at biopsy was 76cc. If I gotta suffer, then I want the record...lol Maybe it will be in the Pathology report, which I should get Friday or Monday. The lymph nodes and seminal vessels appeared not to have anything unusual on them. He removed 4 lymph nodes. One thing I hadn't read about , maybe it's because mine was bigger, was gravity is a bad law in this case, as standing up allows things to drop down into what was an filled cavity, but now is open, raw and freshly cut. That makes for some awesome pain. He also speculated that because of it's size, it had maybe stretched the nerve bundles, because when he began the removel the bundles just fell away from the gland and he had to do little touching or moving of the nerve bundles. lol He said if I had gone to Vanderbilt, if they would had taken me because of the size, I would still have had to have the conventional incision, but would have been 300 miles away from home and still cut open. He says that if we are in pain we aren't healing as fast, so is making me take my pain medicines for pain and bladder spasms. I haven't ever been much to fight pain to be macho man, so I am pleased with the Percocet. My wife is happily taking care of me, as she finally has something that she can do in my care, rather than just waiting. She is much relieved, as I am.
Here's the details of my surgery and the first few days after surgery:
I arrived at the surgery check-in at 530am, was assigned a prep room, removed clothes, put on gown, got an enema and a belly shave from nipples to half way down my testicles. At 645am, I was moved to the recovery room area, joining 21 other patients waiting their various surgeries. There was a mixed bag of open heart surgery to surgical setting of broken bone this day. I was assigned an aneastologist and assistant, who prepped me by inserting an IV, checking my wristband numerous and asking me who I was and what procedure I was scheduled to have countless times, it seemed. My surgeon came by around 7am and said he would be ready for me shortly and assured me that we would have a good surgery day. The tech said "I'm gonna give you your 'calming shot now' and the lights went out. I entered the surgery room at 720am, was awakened in the recovery room at 1030am, and was in my room by 12:35pm. My stay in the recovery room was a little long because of a low blood pressure issue. I had a right inguinal hernia repair done along with the prostatectomy, so that added 30 to 45 minutes or so of surgical time. I asked for and received a bladder spasm suppository in the recovery room, which eliminated any discomfort I had. I recommend you discuss with your surgeon doing this, along with a prescription to take home for as needed use. The pain level from recovery room
to discharge time was maybe a 6-7 immedialtely after I got to my room, but the nurse gave me a painkiller shot in the iv, and took care of that. After the inital pain control, pain stayed in the 3-4 area the rest of the day, and was mostly gone the next day. Any pain left was from movement, and easily tolerated as it mostly stopped when I stopped moving. lol The incision was 5 inch long, centered midway between the belly buttom and pubic bone. Mine is stitched internally with dissolvable threads, the outer is glued together, makes a nice clean barely noticeable scar, I am thinking. I had a drainage tube on the left lower abdomen, which was painlessly removed the day after surgery. It left a pea sized opening which has scabbed over and is slowly sealing and filling up. The surgeon placed a On-Q lidicaine numbing pump with a tiny line running and laying down in the glued incision. It was a real value to keep the incision numbed for 48 hrs. The amount of cutting is about the same as the robotic 5 or 6 cuts they make, if you total the length of them, so I don't consider that a factor. The advantage of open, is the doctor gets a hands on technique for removal, and I think there's a better chance of truly evaluating the surrounding margins and bed by both sight and feel. Personal opinion, of course. I was on my feet and walking 5 hrs. after surgery. I began drinking as much water as I could stand, after all you are on a catheter bag, this flushed out clots, blood and left overs from surgery. Drinking all you can and walking is key to a quick recovery and fast discharge from the hospital. I walked 2 times that night, was on light soft food the rest of the day of surgery. Next morning, I was allowed a regular diet. That morning I walked, got to know my limitations with the cathater, got some home care instructioin for wound care and catheter care. I was discharged late that afternoon. I was sore for
2 days, had low range pain for 2 days after discharge. Nothing agonizing in either case. After the 3rd day I felt probably 80% back, as far as pain and soreness. I was back to full mobility, almost full stretching and pain free after 4 or 5 days. I showered the day after I got home, which was the 2nd day after surgery. At that time, all the dressings came off and the On-Q pump line came out, when the dressing did. The wound is healing fine, and is almost complete 11 days after surgery. It is no problem and no pain. Any limitations I had after surgery was created by the catheter and bag. I am on a 5# weight restriction for 4 weeks, then go to 10 lb for 2 weeks and full release after that. I managed to keep a low grade fever for 6 days, which is a couple days longer than expected during recovery. I had some amount of swelling and bloating in the abdomen, most of which was relieved first with the initial passing of bowel gas (where does that much come from in such a short amount of time) lol , and later with the first bowel movement. I don't know if the robotic would be easier, but I do know that the big issues for me after surgery was the inconvience of the catheter rather than the open surgery wound and recovery. I suspect I would have felt as good/miserable with either procedure.
Post-Surgery Day 3:
First bowel movement, not painful, but really strange sensations during it. sorta felt like I was straining to push out the
catheter, but was not straining in any way I could tell. Got back regular quickly. Got my post-op path report today.
Post-Op Pathology Report:
A. Lymph nodes, bilateral external iliac, hypogastric and obturator areas, resections:
Four fatty lymph nodes, no metastatic tumor is identified.
B. Prostate, prostatectomy
Histologic type: Acinar type of adenocarcinoma
Histologic grade: Gleason grade=3+3=score of 6
Margins: Probable microscopic involvement of the left apical margin:
Remaining margins clear.
Extraprostatic extensdion: Not identified
Seminal Vessel invasion: None
Regional lymph nodes: See A above
Distant metastasis: Cannot be assessed
Perineural invasion: Microscopic intraprostatis perineural invasion is present (see guide to sections)
Venous invasion: None identified
Lymphatic invasion: None identified
Pathologic staging: pT2c, pN0,pM0 (pathological state II, AJCC, 2002
Accompanying the report was a drawing from various views of the gland, sectioned off, with shaded areas, representing the tumor, I suppose.
Post surgery Day 6:
I am recovering from the recovery now. I have been with a low grade fever (99.2 ave. ) since I was discharged. Saturday was my worse day/night. I really got sick Sat. night and had a miserable night. I had reach a state where I chilled almost all the time, and I didn't have enough strength to take the string from a small kitten. Sunday I decided to change my approach, and dropped the pain meds, the bladder spasm pills, the stool softner and added a Cipro antibiotic to the other kind I was already on, along with ibuprufin in place of extra strength Tylenol. This made a big change in things, the ibuprufin really helped to gain control of the fever, the extra antibiotic seems to be working now. The first few days back, I felt bloated, swelled, and "hot" in my abdomen and that all seemed to go away within a day. I also wasn't sleeping well, wrestling with that bag and waking to make sure I hadn't tangled in it. Sunday I switched to the leg bag, for once properly adjusted, and slept with it last night, my first good nights sleep since before surgery. It's my 3rd day without Percocet, or any of the others, my fever is gone for 24 hrs now, but I am still hot flashing and sweating periodically. (What gives with that?) I began a more strenous walking schedule and have walked until I am really tired today. My appetite had also been off, I usually had seconds, but was unable to take half of my firsts as the fever developed. After the Cipro and ibuprufin kicked in yesterday afternoon, I sent my Dear Wife to our favorite Mexican resturant and got a taco sald, chips and salsa. I figured it had been a full week of cold turkey from mexican food, and maybe part
of it was withdrawal, so I ate the whole thing, amazing myself and all around me. The more I ate, the better my appetite became. I sorta suspected I might pay for that last night, but it didn't bother me, I slept like a baby, and woke this morning to a new day.
I still have to fight the catheter until 1030am Friday morning, but it is finally tolerable, and I am sticking with the leg bag.
The hot flashes continue, without any fever though. All in all I am a very different man than I was Sunday morning.
Post surgery Day 8: Continued improvement, am really picking up strength and walking a mile a day. The hot flashes have almost ceased, I am painfree and on a strong upward curve for healing.
Post surgery Day 10:
I just got the catheter out from my open surgery done on the 24th. Removal was a non-issue, and no leaking afterwards. The Doc went over the path report and said there wasn't anything in it to cause any worry. I will get my first PSA in 6 weeks, then go to a 3 month schedule for the first year, at least. He again mentioned my surgery and the stitching and connecting of the bladder neck and ureter, along with the nerve sparing was textbook case, so a lot of anxiety has eased for me. Another milestone passed. 10 days past surgery and the catheter is out. Just a wierd tickling, slight pulling sensation during removal. First thing out was a few drops of light blood tinged urine. We waited for a couple minutes, (picture 3 adults sitting staring at one poor pitiful penis, talk about performance anxiety lol) no drops, no leaks. On went the pad, the too tight underwear and some normal non-sleepwear clothes. Ah, the feeling to be dressed regularly again. A short ride home, less than 15 minutes, and still no leak. I was standing there and tried to make the pee function that I knew, and felt a little 'maybe leak', so decided to go ahead and try. I pee'd maybe 3 ounces, it stung a little-similar to how a slight bladder infection feels- and I was able to close it off just fine. I did have a little dribble at the end to completely empty, but was able to close it back down easily. We decided to go grocery shopping, so I noticed the time and went 1 hr. and 20 minutes before I felt any sense of an urge to pee. In the bathroom, again no leaks or drips, a good stream,a little stinging, and a little amount of dribbling to complete the bladder emptying. Home for lunch, had a 20 oz. water, and it's been 2 1/2 hrs, and am just now getting the urge to pee again.
I see this is gonna be a learning experience, adjusting to the new signals and sensations, but so far , so good. I'll feel better about it if it holds for a full week, though. I noticed immediately after the removal that I automatically tightened up, an unconscious effort. I would describe it as similar to when you suck in your gut, but lower and more rearward. It does feel a little strange to have the 'sucked in gut' feeling all the time, but that's something I can live with... I gotta figure out just what some of these new feeling mean in relation to my continence.
On another note, Doc said the 'probable microscopic margin' description was the best example of hedging and covering all bases that he had seen in a long time. lol He said he would let the PSA' determine whether we need to be concerned, to just enjoy things now that I was recovering so well.
I've got up to 1 mile a day walking, although it still tires me out, so I walk, then come home to the vibrating and heat recliner for a half hr. or so, it does feel good to be active again. I hope to add a mile next week until I get back to normal, by then I will be able to get back to the gym and a normal routine, hopefully.
Week 8: First post-op doctors appointment, PSA level is 0.01. Received full release to resume normal activity, he suggested using a pump and to begin in earnest to regain sexual function. Next appointment in 6 weeks.
Continence day 1:
Catheter out at 1030am. A good dry day. Began having a few stress leaks late evening.
Long night, was wakened every hour by urgent urge to go, kidneys didn't slow down like normal when sleeping. Around 3am, it finally dropped back to the urge every hour and half or so. Each time the volume was maybe 1 1/2 to 2 oz. I suspect I have a slight bladder infection or really bad irritation from the catheter tube, as it still stings. I only leaked a little twice while sleeping, no enough to make a mess in the pad, but I definitely got the signal that I had waited too long. It felt sorta like a little shock from the base of the penis out to the head.
Continence Day 2:
Good day, some small amount of stress leak, nothing to worry about. Better night, went on average 1 1/2 to 2 hrs, without the sudden stinging urge or the burning while peeing. Stayed dry, no leaks, etc all night.
Continence Day 3:
So far, so good. about 2 hrs between bathroom trips, moderate volume of pee passed. No urge or stress leaking.
Continence Day 4:
had a good night, averaged getting up every 2 hrs. No leaking, one minor drip.
Continence Week 8: Fully continent for 5 weeks or so now. Pad only used at night, just in case. I now consider continence to be a non-issue and won't report further unless things change.
Began 25mg. Viagra each night, the night of catheter removal.
Day 2 after catheter removal:
Penis is shortened maybe an inch, a little meat in a lot of wrinkles during the day. However after showers and this morning it had lengthened some, maybe an inch, and filled in, almost a respectable flaccid organ.
Each morning after my shower, it is longer and larger. Nowhere even beginning to be swelled up, but in this state it looks to be near normal as to before surgery appearance.
Doc and I discussed this issue and Doc said he prescribes Viagra 25mg, and at the 6 weeks checkup, if I had no response, then he would prescribe a pump. I told him I was willing to try the pump if he wished , but that if left to me, I would go straight to the injections both for function and therepy. He didn't seem adverse to the idea and asked me if I had done a lot of research about it. I told him I had, and felt this might be a better thing for me. We shall see......
Week 8: Still no advance on the ed problem. I switched from taking 25 mg. Viagra daily to 50mg. every other night. I have been supplementing it with a nightly dose of 2000mg of L-Arginine to help with adsorbtion of the Viagra. I began using the Vacurect pump twice daily to promote blood flow. It seems to be working as I have a larger and fuller organ now. I am able to pump up a full erection with the pump. I have some added length and fullness of the morning and after showers. Keeping the blood in the penis requires a very small diameter ring on the pump, which results in stretching of the skin and feels uncomfortable. One thing I have noticed is I will sometimes become the same way after a bowel movement, also. I am having one problem that I hope corrects itself soon. I will involuntarily squirt some pee out when stimulation becomes very pleasureable and I 'get into the moment' and don't pay attention. This doesn't happen when using the too small ring, though.
November 16, 2007- Updated info added to the Continence and ED sections.
First PSA- 0.01
ED- Jan. 1, 2008 - first use of penile injection:
I am 3 1/2 mts. post surgery, have gone thru the Viagra and the pump routine, and last night did my first self-administered Caverject Impulse injection. It was comical in some ways. I had had no response from the Viagra and very unsatisfying results from the pump, so we hadn't had but one semi-successful session of lovemaking since surgery. It had been successful for her, in a sorta kind of way, as we had to fight a leaking down penis the whole time. Unsatisfying for me, as I didn't get a whole lot of pleasure and no climax from it. So we approached the first injection with hope and anticipation. My Doc recommended I start with a 2.5mcg dose of alprostadil in a Caverject Impulse system, given that I had absolutely no vienous return valve control, allowing any blood drawn in from the pump to run right back out.
January, 2008: I tried Caverject Impulse several times, in varying strengths, and had to abandon it due to pain and aching during and after use. It gave good enough results to allow intercourse in the higher does, but the accompanying pain and ache wasn't worth it.
February, 2008: I got a prescription to Bimix 30mg/1mg and tried it. First few times, had success with a fairly high 50ml dose, then it seemed to lose it's effectiveness, also had problems getting the injection in the right spot in the cavity to do much good. Lots more failures than successes.
April, 2008: Switched to Trimix, 30mg/1mg/2.5mg at varying levels from .5ml to .25ml, very little success with it either. I have alternated between the 2, along with the daily Viagra and l-Arginine, with pump and still no success.
May-October, 2008: ED failure and ED therapy continues with the pills, pump and prick plan, to no avail. A natural erection, either awake or nocturnal is still a dream for me.
October, 2008: At the end of a year after surgery with nerve sparing and a good report of confidence from the surgeon that I should recover function quickly, it remains absent. The best I can report is that if I use enough stimulation and squeezing of the blood into the penis-sorta the reverse of milking a cow technique- then I get maybe 40% until orgasm. One odd thing that has started the last few months is I am now able to to control loss of urine during orgasm, and afterwards, I am getting the Cowper's Gland fluid in a fairly good amount. This only occurs after orgasms and happens like it is taking the place of the ejaculation, it flows out at the same time as one would. I thought this gland was removed during surgery, but evidently some are and some aren't. That it waited 9 months to make an appearance is a mystery. Aren't I the lucky one...lol Veinous valve control of the penis continues being a problem, as I am unable to maintain any kind of blood retention by the valves.
Sept. 2010: ED continues, no improvement from the Oct., 08 report. Using Trimix and Bimix injections successfully.
PSA tests continue to be .04.