Posted 7/24/2007 3:53 PM (GMT -7)
Hello all you great people here on the forum. My last thread got too long to be manageable. This thread contains our journey from the beginning to the present. I will place updates here from time to time.
Here are links to other threads that contain all the detail of MaryLu’s and my journey and your heartwarming replies.
We are so indebted to all of you. You truly make an arduous journey much easier…
(direct link ~ just click on the title! Reminder to click on the REFRESH icon once there)
Biker90's RRP Journey & Updates - Nov. 7, 2006 - July 18, 2007
Biker90's Cancer Summary
Biker90' Page.... Welcome New Friend :)
Why We Chose Our Treatment Option
Too old for treatment?
Hi everyone. I was diagnosed last Friday with PSA 7 and 3+3 and another 3+3 on the other side. We (my wife and I) are in the process of deciding what procedure to have done. We meet with the oncology team in 2 weeks. I'm 72 so am glad to see some posts from other old f____s.
We are doing a lot of reading and surgery or radiation seeds seem to win out so far.
Waiting and Deciding
We are still reading and talking about it all. I wake up in the morning convinced that surgery is the way to go and by bedtime am back to radiation and vice versa. It seems that time doesn't help the decision making process but time does dull the sharp edges of the news that I have cancer. We CAN live with it............
We broke the news to all of our kids (4) and I think it was harder on them than on us. I am going to point them to this web site because of all the hope displayed here. One daughter said "Oh dad, what can I do?" I told her that from now on I would expect more expensive presents more often. ( There has to be an up-side somewhere in this situation ) We are still coming up with questions to ask the oncology team a week from Wednesday (11/22) My wife favors surgery so far and I still am on the fence. (No, not a picket fence..........) I am doing really well, thanks to you guys and gals and all the info that is available.
We have 10 days to go till we meet the oncology team and hopefully find out which treatment to do. I have prioritized my fears into: 1) death from the spread of the cancer, 2) incontenence and 3) impotence. I suppose these are the same priorities that most men have. I would like the opinions of you who have been in the fox holes before we meet with the pros. I have had several (6) prior abdominal surgeries in the last 50 or so years and am "full of adhesions" according to the last doctor that saw my insides in person. I have some emphysema but it does not bother me unless I really over do things. I'm 72 years old. Please send your thoughts if that is okay to do here..........
I have RRP schedulled for 12/7/2006. Phew......... the waiting is finally over and surgery is not a problem (I thought prior surgeries may have precluded RRP but this is not the case.) I guess that waiting was necessary to make sure we made the right decision but it did get tedious.........
Thanks everyone for all the support.
Waiting for Surgery
One week to go till surgery. I've been sneaking a peek at the various pads etc. in the drug store. What a selection. I don't know which kind to get. My wife says she will take of it when the time comes. (She had lots of experience with the kids 40 years ago.) I never thought I would regret not doing some of that stuff myself. We chose RRP because it seemed to be the best way to get the most information on my condition in the fastest possible way. Waiting for seeds to take hold and watching the PSA drop over time did not seem like a very good prospect. We chose the open procedure because we want the doc to have the best possible opportunity to see what is going on and get lymph glands out. I've had numerous abdominal surgeries in the past so know what to expect and don't look forward to the discomfort but that seemed like a small price to pay for more information faster. The doc mentioned a "wait and watch" study but we rejected that for the same reasons as seeds. If we are overlooking something please respond. There is no such thing as too much information. Thanks everyone...................
Hello to all you great people and thanks so much for your thoughts and prayers. They were what brought us through the surgery in such fine shape.
Checked in to hospital at noon on Thursday 12/7. In OR from 1pm till 3pm then in recovery till 4:30 pm.
Lymph glands were clean and Dr. saved both nerves. Yippee!!!!!
Came home at 9am on Saturday 12/9. Get staples and catheter removed next Wednesday 12/13. Path report on prostate due then.
History : My father died of prostrate cancer in 1985 at age 81. I was 51 at that time and began having annual PSA tests with my yearly physical exams. All was well until August 2006 when my PSA jumped from 5.1 to 7.1. The first biopsy in September showed some suspicious areas so a second test was done in October. The results on 11/3/06 showed a T2B cancer.
Plan : My wife and I decided on RRP. This decision was reached considering that surgery was the fastest and surest way to get the cancer gone. We decided that a few weeks of discomfort followed by the possible incontinence and impotence was worth the risk.
Surgery : RRP was performed on 12/7/06. The lymph nodes were clean and the surgeon saved nerves. I was in the hospital for two days.
Pain : The anesthesiologist put some morphine in the spinal and I had absolutely no pain for the first two days after surgery. I took hydrocordone on day 3 and day 4, then nothing from then on. The problems with morphine were a lot of itching (relieved with frequent body rubs with lotion by my dear wife) and vomiting during the first day after surgery. These problems were gone by day 4 but I had severe drug withdrawal (monkey on my back) for about 3 hours on night 4.
Emotional : The days spent waiting for the results of the second biopsy were the most anxious of the whole process. On that day the doctor said I had cancer but that my outlook for longevity was excellent. From then on, I have had no fear or anxiety about the process or outcome. (Probably a holdover from my “bulletproof” days.) But more than that, the support from the HealingWell forum and the prayers and support from my family, friends and neighbors have been invaluable. While I was being prepped for surgery, Fr. Michael from the hospital chapel administered the prayers for the sick. I felt a great surge of confidence and carried it into the operating room.
Future : The staples and catheter come out tomorrow, 12/13/06. I feel strength in my sphincter and look forward to regaining continence soon. The catheter has caused no problems at all but “carrying the bag” is not my idea of a great way to live.
Been up since 4:30 am. I got all tangled up in the tube so just got up and changed to the leg bag and realized that this was the last night with the exterior plumbing. Phew........... So I'm sitting here listening to The Carpenters old recordings on the internet. Karen Carpenter died young. She fought anorexia (sp) for years. Makes me so grateful to have something that can be cured. Soon it will be time for breakfast and then off to get liberated.................... Thanks for all the support and see ya later.
Just got back from the Dr. and the catheter and staples are gone, gone, gone! What a relief..... The path report is the best we could hope for. Cancer completely confined to prostate so it went out last week. Pathological stage stayed at T2B and the Gleason went from 3+3 to 3+4. I am so glad that we chose surgery and got it over and out of our life so soon....... First PSA will be on 1/3/2007 so will hope for "undetectable". Now to the Kegels and regaining control - this starts tomorrow. During the month between being diagnosed and the surgery, I had time to reflect on what was important in my life and, as would be expected, have rearranged things somewhat. The little things that I overlooked for 72 years suddenly have taken their proper place in my life. The smell of a winter morning, the poem one of my sons wrote for me (I still can't read it with dry eyes), hunting with my other son (he gets the deer, I just get to carry a gun in the woods), my daughter's (both of them) smile, my dear wife's (of 51 years) sweet kiss. These things now replace the thrill of going balls out and pedal to the metal in everything that I do. Cancer did this for me but I would never have realized it but for the support of this forum, my family and friends and all the staff at the hospital and Dr office that helped show me the way. Thank you all so much,
One week after surgery and one day after the catheter removed. I'm wearing my regular clothes and using a pad in my shorts. Had 3 small leaks yesterday and nothing since then. Doing Kegels as prescribed by the doc. No pain and no medication since 3 days after surgery. Drug withdrawal from the morphine is letting up and have not had the "monkey-on-my=back" in the last 2 nights - just some emotional flashbacks now and then. Please keep propping me up folks - I need all the help I can get............
Post-op day 8, post-cath day 2.
Still dry. No leaks since 8 hours after the cath came out so I am going about in "street" clothes today. I will risk it. My biggest fear in this whole ordeal was that if I survived, I would have to wear diapers the rest of my life.
Reading your posts was the biggest help in this area for me. Thanks for being here.........
Post-op day 9, past-cath day 3. Still no floods, no leaks and no drips. I threw out the remaining pads and diapers this morning as a gesture of dedication to continence. Doing Kegels as prescribed by the doc. (5 reps of 5 secs on and 5 secs off, 10 times a day, on the hour from 6 am to 4pm) The time of day is mine not his. Did my daily stretching exercises (for arthritis) and my daily walk. It sure feels good to get back to a routine again. I drink lots of water because peeing feels so good. This is a side benefit of getting rid of my oversized, lumpy prostrate. I keep discovering small pleasures that I had taken for granted or overlooked entirely. My wife came down with a nasty virus that hit her lungs. Had to take her to Urgent Care last night. They gave her some breathing treatments and some medicine and she is getting a little better today. She took such good care of me, now I can take of her. 12-19-2006
Post-op day13, post-cath day7 Had a small leak when I sat up, just enough to feel it, didn't get any thing wet. I had been doing Kegels and decided to do more in order to hurry the process. (If a little is good then a lot is better, right? Wrong!) No pain. I started working on getting my limited pre-op potency back. I had ED before and was using Levitra. Doc told me to keep using it. Nothing yet. The posts on this forum are helpful in assessing options. 12-21-2006
Post-op day 14, post-cath day 8 I had the "whips and jangles" yesterday from the drugs. Also I thought I was too smart and went without the Kegels. Then I went shopping for about 4 hours. And guess what, I had a big leak in bed last night. This whole recovery deal can be so exhilarating and so humbling. But maybe I learned my lesson. I'm doing Kegels today and taking it a little easier. I've been reading other threads on this forum about potency. My first attempt at sex was a total failure. Flat tire. Nothing. Nada. I took some Levitra but it did nothing. (I used it prior to PCa because I could always get it up, but it wouldn't stay up long enough to finish.) I read on this forum that it could take 6 mos. or longer for the nerves to heal. So, all in all, yesterday was a real learning experience, humbling but very educational.
Post-op 3 weeks, post-cath 2 weeks No leaks! Doing Kegels as prescribed (rather than doing too many) works great. My second greatest fear (incontinence) seems to be under control. I'm also doing some ED exercises and can report some progress although nothing really useable yet. At least I am past the "flat tire" stage and feel very encouraged by that. I still have the low level "monkey-on-my-back" from the drugs. My past experience says that this will probably last for about 3 months more or less. This is a very small price to pay for so much benefit. RRP was truly the right way to go for me. I have no more pain and can do my stretching exercises (arthritis) and daily walks just as before. Having the cancer out of my body (hopefully) gives me great peace of mind.
Post-op week 4 PSA from sample taken on post-op + 22 days is 0.04. Yippee!!!!!!!!!!
Post-op week 5 I'm back at work teaching mathematics part-time at the local community college. I get tired easily, probably due to the surgery but really feel good about everything. My wife is lots better (she had a lung infection) and just got done painting the living room. (Yes, I helped!) There's no more pain in the incision and no problems holding my pee. I have to get up to go a couple of times at night. Right after the surgery, it seemed that my bladder was really small. Maybe it was due to the internal swelling because I have lots more capacity now. I had trouble going for about 2 years prior to PCa and that is all fixed now. I can pee like a 65 year old again! I'm still working on the erections. I get about 50% now. That is up from 0% right after the catheter was taken out. My wife is very patient with my progress in this area. We are confident that we will get back in the sack soon. 01-25-2007
Post-op week 7. Continence . I have no leaks unless I get really tired. I feel so good most of the time that I over do it occasionally. Teaching 3 lectures in the morning every day gets me tired but I recover by mid-afternoon and then do my arthritis stretching and take my mile walk on most days that are not too cold. My nose tends to freeze at about 15 degrees. I still get up to pee once or twice each night but having a steam like a fire hose makes for short trips. Still doing Kegels regularly - I thought I didn't need them anymore but found out differently. Potency . Still not much to report here. I get about 50% of a boner without any pills or pumps and am starting to feel some stirring in the morning when it was almost always up prior to surgery. My wife and I do a lot more cuddling than we have done since dating (51 years ago). Feeling close, touching and hearing each other breathe really are nice experiences. I'm sure that when we can get it on, these things will make it better than before. It was a revelation to me that the object of foreplay could be foreplay. Ahh - the wonders of age and PCa! Emotional . I still have a few ups and downs from the effects of the drugs. They are not a problem when I remember that they just happen and will go away eventually. My temper is a little bit short so I have to take a time out when I feel the heat build up. I had myself psyched for the surgery and the recovery and now am getting back to normal. 02-01-2007
Post-op plus 8 weeks. Well, you all know this but PROSTATE CANCER SUCKS. Excuse me for yelling. This is the cleaned up version of this post! My testosterone level is headed for the basement and it leaves me totally beat by the end of the day at school. (I should have taken this quarter off to recover.) By the time I get through three lectures, I can hardly make it back to my office. I had to quit the T shots last November and I hope this is the bottom. I don't know how long that takes. Maybe Swim or someone can tell me where I am at in this process. I get hot flashes about 5 or 6 times a day. They are a nuisance because all of a sudden I break out in a massive sweat. I'm still doing Kegels and haven't had a leak for quite a while but I know better than to declare myself cured. The effects of this d______ disease are going to be with me awhile. I ordered some blue pills from that pharmacy overseas and they should be here in a week or two. The Levitra that I was on before surgery doesn't get the job done - yet. I get about half a boner with no medication and hope the pills help us get back in the sack. I know, everyone says it is too soon but by darn, I'm going to try! My brain says that its been a long time since we had sex but my body says, "What's that?". I'm intellectually and emotionally horny but physically uninterested. I'm about as confused as a 12 year old! Well, that's it. Excuse my whining....
10 weeks post-op Continence : Getting better all the time. I only have small leaks that I can catch when I get tired. Squeezing before moving or coughing etc. has become almost automatic after lots of practice. I'm doing fewer Kegel reps than before and it seems to be working anyway. Still have a stream like a 65 year old and that is a good thing. Potency : Not much progress here. I use the blue pill about once a week and do some exercises to get the blood to flow each day. My T level is bottomed out so I don't have much libido. I get some new sensations in my pubic area lately so I think that the nerves are healing and coming back to life. Testosterone : Like I said, my T level is on the floor. At least it feels like it did a couple of years ago when it first dropped. I'm seeing my family doc next Thursday to get it checked and see if anything can be done about the hot flashes and tiredness. I've seen some research that seems to say its okay to take T replacement after a year or so of undetectable PSAs. Any suggestions, advice or experience from you guys would really be appreciated.
I have to drag myself out in the mornings to do my lectures. Sometimes I have to cut them short or sit down for a while because I just get totally bushed. It is hard to stay positive about things when I'm in this condition and I get periods of depression that are hard to shake. My dear wife helps me and I know it hurts her to see me like this. This is not a result of the surgery or anything to do with PCa. It is the result of low testosterone level. I had it a couple of years before being diagnosed and the T injections immediately fixed the problem. This time it is worse.
02-22-2007 11 weeks post-op Continence : No leaks and no more nighttime trips to the bathroom. I got back to my daily walking routine and I think that helped. (I only go a mile because I'm really old...) Potency : No progress, still about 50% and not near being useable. My wife wants to get more active in this part of my recovery. (That scares the h___ out of me for some reason...) I saw my family doc today because of the tiredness, sleeplessness and general down-and-out feeling I've had lately. He is checking my T level and my thyroid. And --- he put me on prozac (generic). I guess I have symptoms of depression. During the session, I came apart at the seams and cried like a baby. I have been holding it all in since being dxed. (Gotta be strong!!!) That's the first time I have cried out loud since my dad died 26 years ago. I felt embarrassed and weak for doing it. Anyway, anybody that has experience with prozac, please advise and inform me if you would...
3 month post-op Continence : Not an issue anymore. Plus one of the positive sides effects of surgery is lots fewer trips to the bathroom and no trips at night anymore. This area is better than its been for 10 or so years. My stream is powerful! (like a 65 year old again) Potency : Slow progress toward getting erect enough for intercourse. Sometimes are better than others I'm still working on it and my closer relationship with my wife is helping. WE will make it.... Low T : Prozac is kicking in so that I don't feel so depressed all the time. Routine tasks now seem like foothills instead of mountains. I have another appointment with my family doc on 3/15 to go over my T and thyroid numbers. Swim and others here on HW have been a great help in understanding what is going on and how I can deal with it. If I have to wait a year with undetectable PSAs before going back on TRT, I can do it. This last month has been the toughest of my whole life and I have been through some crap before. But I think I have hit the bottom and am slowly climbing out of the pit. Thanks you all for being there...
Low testosterone update. I saw my family doc today and finally got my T results. My T level is 48 (normal 150 - 750) and my free T level is 0.5 (normal 5 - 25). These are numbers that are on the report. The next step is to see my uro on 4/4 for the second PSA. At that time we will discuss T therapy for PCa patients where the cancer is all inside the prostate. My doc said there are some recent studies that might reverse the common thinking that tesosterone therapy is not good for PCa patients. I don't know enough about it right now and don't want to do anything to jeoprodize my recovery. However, this low T state is not what one would call a quality life. (Symptoms are depression, hot flashes, low energy, lack of strength, no sex drive and eventually more serious problems with osteoperosis etc.) Prostate cancer attacks our quality of life big time. It makes us make tough decisions not only for treating the cancer but also for treating the after effects. Some guys here are on T replacement therapy after having undetectable PSA for a period of time. If that is a possibility that my uro recommends, I will do it.
I don’t even think about continence anymore. The new plumbing is working better than the old had for lots of years. It took some time and lots of Kegels (which I still do occasionally) to get the new sensations sorted out and learn what to do with them.
No progress here. I have not achieved anything close to a useable erection yet. I can feel the nerves and tissues healing. Feels like small bites from the inside once in a while. This is going to take some time because of low testosterone that leaves me with no sex drive. Trying to force blood in my penis is just an exercise. This condition worries me even though I realize that I am early in recovery and the possibility of going back on T therapy is still in the future. I get impatient, as do we all.
This topic probably does not interest the majority of you folks because it is not a direct result of PCa but rather is the result of low testosterone. Swim helped me get to the reason I have low T in the first place. I had some physical problems when I was a little kid and had to take T shots as a child. Then several surgeries apparently fixed the problem. But now, later in life, the problem is back and has been for about 15 years. I was on T therapy before being diagnosed with cancer and had to stop it, then the depression hit.
I waited much too long to go to the doc for it. I felt down but thought it would go away. I thought that it came on all of a sudden but now realize that I was sinking for a month or so but it was slow enough that I didn’t realize what was happening. One day the thought of killing myself came into my head and just would not go away. It was an obsession. I couldn’t tell you folks about it, not my wife and not my doc when I finally saw him. He asked. I lied.
I am very lucky that nothing bad happened. It was just good timing that I got some help when I did. So my message is that if you guys or gals start getting down because of this disease or for any other reason, please, please get some help before it is too late. Looking back on the past month scares the hell out of me and I am dedicated to seeing that it never happens again.
The doc put me on 10 mg of Prozac for a week then 20 mg for two weeks and now I am on 40 mg. If any of you have experience with Prozac I would like to hear from you. I don’t know what to expect. It is making my life manageable now and I hope it continues.
Thank you all for being here for me. Reading your posts and hitting the chat room with you really helped me through the roughest times.
4 months post-op PSA – 0.00 Yipppeee!!!
I saw the ED guy today and he gave us some Levitra to try out after my T level gets back up to something like normal.
This has been the hardest two months of my life. The low testosterone level has all but done me in with no energy, no enthusiasm, depression and no hope. Thankfully, it is nearly over because I finally got my uro to let me start T therapy again.
First we talked to the uro’s PA who is the ED guy in the office. I gave him my journal of the previous two months and my T level lab reports. He immediately said he would put me on gel to get my level back up. I was elated. Then the uro came in and said there was no way I could go back on T therapy for at least 18 months of 0.00 PSAs. I told him that I simply would not live long enough to see that happen. We got in each other’s face (very unproductive and not recommended) and after a 5 minute argument dealing with quality vs quantity of life issues, he finally asked what my T level was. I showed him the report (48) and he said okay to the shots but no gel and I had to get the shots in his office. Its like I am a little kid and can’t be trusted to follow instructions after taking shots at home for over 10 years. He said he would let me get up to T level of 200 and I had to have it tested with my regular 3 month PSA tests.
Dr, W. is an excellent surgeon and if I had to start this journey over, I would not change anything through the surgery and physical recovery. Everything has gone as smooth as could possibly be expected. However, Dr. W. is of the school that insists that T will spread any remaining cancer cells through my body. He is not in the least bit interested in what low T does to a person. The PA had read some literature on T replacement after RRP and was convinced that T therapy is the way to go.
I don’t know how all this is going to play out and I wish there had been a friendlier atmosphere in the doc’s office today. I do know that I will be better soon because MaryLu gave me a 200 ml T shot as soon as we got home. (Dr. W. was right not to trust us!!!)
I am getting some response since my T level is up a little bit. Its about 50%. That’s where I was before the T level took me down.
We saw our family doctor today and told him what had happened with the urologist and my argument with him about T therapy. (He had heard about it already…) He was sympathetic but gave us a number of reasons why he could not go against what the specialist had ordered - none of which had anything to do with cancer or testosterone therapy.
He referred us to another urologist for a second opinion. That appointment is on 5/9 so we will see what his take is on T therapy. In the mean time I am taking 200 ml every three weeks at home. This is what my urologist prescribed except that he wanted me to have the shots in his office. If the second opinion comes back the same as the first i.e. no testosterone therapy to any level that is livable, I will go back to my urologist and start over trying to convince him that he needs to consider quality as well as quantity of life.
Here is a summary of my experience in regaining continence.
about 8 hours after the catheter was removed I could hold my pee and turn it on and off. I still leaked a lot and could not distinguish the various signals that my surgery and new plumbing were sending my brain. I wore pads that day and night and the following day I noticed that I could feel my pee starting and my initial reaction was “what the heck, I have a pad. Just let it fly.” I decided that this was not a good way to get control so I threw out the pads. I called it my dedication to continence.
I leaked occasionally but never went back to the pads because I knew I would not progress unless I paid the price in embarrassment as incentive to get control. I was very aware of the sensations that my brain received from the surgery area and quickly began to distinguish “bladder full” from “swelling” from “get in there and pee now!”.
It worked and within a month of catheter removal, I was dry all the time. Sudden moves, sneezes and laughter would cause a small start that I could always shut down before I got wet. In another month, I had forgotten all about continence. It was no longer and issue and I was back to my pre-surgery condition.
I was very fortunate in that I had control as soon as the catheter came out. I had no flooding and could always feel the pee start to go. Also my bladder capacity increased dramatically after two months and my stream is stronger than it has been in many years. I no longer have to get up to go at night. This is a positive side effect from having prostate cancer surgically removed.
Other than the excellent surgical result, I attribute my rapid return to continence to doing Kegel exercises before surgery and after the catheter was removed. My routine was: 5 seconds on, 5 seconds off for 5 reps on the hour for 10 times a day. At first that seemed like a lot of exercise but it really isn’t. The exercises go quickly on the hour and I never felt any tiredness or pain from doing this routine.
Good luck to all you guys that are working on your continence. Getting control and getting “back to normal” in this area of our life is a great victory.
I had my second opinion meeting with a new urologist this morning. He had actually read my journal and my medical records. He came in and told me what my history with low testosterone is. What a difference! Then he put me back on the prescript ion that I had before Pca. He will monitor my PSA every three months. I will build my T level back up over the next few weeks and get off the Prozac when I level out.
What a relief! MaryLu was in tears.
It appears that this part of my journey is over. I hope no one has to go through the side effects of low testosterone especially the deep, dark depression. If you are on testosterone therapy before being diagnosed with Pca, be sure to get your urologist’s opinion on continuing that treatment after surgery. I cannot speak for any treatment except surgery as I don’t know what the considerations would be for testosterone therapy after radiation or some of the other treatments that guys choose. At least, please check it out because being on T therapy could be a factor in your decision.
Here’s to zero PSAs for all of us, for now and forever.
6 months post-op:
No more Prozac! I got off that stuff a few days ago and am much relieved. It made me dull headed all the time I took it. Don’t get me wrong, it probably saved my life when I was in the pits from low T, so I am grateful that there are anti-depression drugs out there. Now I sleep better and feel great in the morning which was the tough time of day for me while I was on it.
The experience of the past 4 months took away my enthusiasm for teaching. Also I have more memory problems than before PCa. I found that I just could not do justice to my part time teaching job anymore so I retired. I wasn’t doing a very good job and the school and students deserve better than I was able to provide. What the heck, I’m 72 and already retired once about 20 years ago. Its time to kick back anyway. My only plan for retirement is to stick around long enough to drive MaryLu nuts.
Speaking of which, there’s not much to report in the ED department. I still take Viagra for recovery and Levitra for fun although we still can’t do the real thing. We have found some creative (for us) ways to have sex. A couple of old fogies fumbling around in the dark! (For those of you with vivid imaginations.)
My testosterone level is up to where I am comfortable and pretty much my old self again. Thanks again to all of you that we so much help when I didn’t know what was wrong or where to turn. I will have a PSA test on 7-18-07. I sweat it a little bit because of the “T is to PCa as gasoline is to fire” theory. If T does cause it to come back, I will deal with it. I will never go back to the dark pit I was in – no matter what cancer may do to me.
I’m looking forward to prairie dog hunting in a couple of weeks. Its an annual trip that my hunting partner and I take to Montana every summer. During last year’s trip I had just gotten the news that my PSA had gone up to 7.1 and I was worried about what was going to happen. Now, just a year later, I am looking forward a great recovery and a lot more years of hunting.
7 month PSA, testosterone and ED update:
Great news again! PSA = 0.00
What a relief after resuming testosterone therapy and hearing all the scare stories from my first uro about how cancer would come back if I ever went back on T. So far so good, and I know that there is risk but I am willing to assume that risk in order to have a liveable life. The last two months have been the best I have had since diagnosis and I’m looking forward to many more as I complete the healing process in the next few months.
Testosterone level = 613 and this is why I feel so much better. As I have said before, I will never go back to that dark pit I was in when my T level was 48.
ED = 100% and this is the bad part of this report (but there is hope). I think that the 3 months I lost with low T set me back in the ED department. Now, my sex drive is back and we have done some pretty wild (for us old fogies) experimenting – fun but can’t replace the real thing. So the doc put me on tri-mix. I have to go back soon to be taught how to use it and to regulate the dose. We have a busy couple of weeks coming up with our annual family week at the lake so I won’t have anything to report for a while.
Looking back from 7 months post-op, the only bad part of this experience was the period of low testosterone. I am well pleased with the results of the open surgery, had very little pain, almost no incontinence and healed up very quickly. But the best part is looking at that 0.00 PSA and believing more and more with each test that the cancer is GONE!!!!!!!!
Thank you all for your support. What would we ever do without each other?
Shots work! I had a penile injection lesson this afternoon from my urologist. I was pretty nervous going in but the shot itself was no big deal. He gave me .10ml (1/10 th ml) of Tri-Mix from my prescript ion. I left about 10 minutes later with about 75% of an erection, drove home and after a half hour had a full erection. First one in about 9 months and the best one I’ve had in 10 years. There was a little soreness probably because those channels and passage ways had not been used for 9 months. It stayed up for an hour and then took about a half hour to be down to where it was comfortable in clothes again. And yes, ML and I did take advantage of it. Rather clinical and not too romantic but REAL sex none the less. First time in 9 months. Its amazing what that can do for the male psyche. I feel put back together again!!
For the past 3 months I have taken 50 - 100 mg of Viagra daily along with 1500 mg of L-Arginine. I have noticed slow and inconsistent improvement in erections but nothing useable. Making love under those conditions is very frustrating. We played with toys and spent a lot of time reassuring each other that it was going to be okay. Now we know its OKAY!!!
10 month PSA, testosterone and ED update
Good news!! PSA is 0.00. Another big sigh of relief and another 3 months worry free. Today the doc said "we are on our way". Almost made me cry.
My testosterone level is holding nicely with 2 ml shots every 2 weeks. It is enough to hold my energy level up where its comfortable, provide adequate sex drive and not enough to cause agression. So far, the risk of testosterone shots causing a recurrance of the cancer has been more than worth it. Maybe I'm just lucky but I would rather think that the skill of my surgeon in getting all the cancer out of me is the cause of my success. Also, if I had chosen any treatment other than surgery, I would not have been able to take testosterone shots and would have been left with all the bad effects of hypogonadism including the life threatening depression. I've been there and intend never to go back.
ED recovery is progressing nicely. I take 50 mg Viagra and a couple of hours later inject .05 ml Trimix. It works every time and lasts about an hour with no pain. Its not like I was 16 again but is lots better than before surgery. And I had always heard that a guy's sex life ends with prostate surgery.
One Year Post-OP
One year ago today I had a radical retropubic prostatectomy. What a year! It was a real roller coaster of emotions.
On the day I was diagnosed I got a shot of adrenalin that carried me through the surgery and a month or so beyond. Rather than being down about having cancer, I was charged up about attacking it and getting rid of it. In one respect, it was relief because my dad had died of PCa 20 years prior. My PSA tests for the previous 20 years had shown a slow but steady increase and when it hit 7.1 my family doc sent me to a urologist. Sure enough, I had it.
I recovered from the surgery with no problems and went back to teaching school 3 weeks after the operation. I was dry the day after the catheter came out thanks to an excellent surgeon and my doing Kegels for the previous 10 years to help with ED. You never know how things are going to fit together.
A couple of months later my testosterone level hit bottom and I got very depressed. Hot flashes, low energy, no sex drive and all the other symptoms of low T. The next 3 months were the worst time of my life emotionally. My family doctor put me on Prozac that made me into a zombie. I would come home from teaching school, grab MaryLu and cry for a while. It was a terrible way to live. Finally, with the help and advice of Swim and others here on the forum, I found a urologist that let me go back on testosterone replacement therapy like I had been for 10 years or so before cancer. Within a week I was back. I will never go back there.
Since then I have been progressing well every day. ED problems are slowly being solved. I take Viagra, L=Arginine and Trimix. Right now I can get a worthy erection without the Trimix but it is inconsistent. I am very hopeful to get back to where I was before surgery.
So much for history. Here’s what I have learned:
1) We have to take charge of our own treatment. Doctors are not gods and can be wrong. “One size fits all” treatments are probably not in our best interests. We have to research, get second opinions, ask lots of questions (I kept a journal with my questions and would write down the answers during the appointments) and talk to others in the same situation.
2) Cancer changes our lives. Not just mine but my wife’s too. It has caused us to be much more open and willing to discuss things like death, fear and sex. It has brought us much closer than ever before in our 52 years of marriage. We have had more sex in the last 3 months than any time since we were in our 20s.
3) Friends in the same situation are our strength. I can’t count how many times the people on this forum have given me the strength and courage to take one more step. Someone always says just the right thing at the right time to keep me going. And this is not just the vast amount of knowledge but rather it is the compassion, care and love that come through your words.
Thank you all so much for your loving help that has gotten me this far. I plan to cling to you for you are my lifeline. Let’s get well together.
13 Months Post-OP
PSA is 0.00 and I go on 6 months testing. I feel like I just got my first pair of long pants – its another milestone in this journey.
The week prior to the PSA results was difficult because I made it so. I forgot to stay focused on today and let myself play the “what if” games. The result was misery for me and I made sure to make it miserable for MaryLu. Poor lady. She has much more patience than I do.
I went back on testosterone replacement therapy 5 months after surgery against the advice of my original urologist/surgeon. He was adamantly against taking testosterone after having prostate cancer. That part of my journey is documented earlier in this post. His view is that testosterone would activate any cancer cells that he might have missed during surgery. My view was that I could not endure the effects of low testosterone. I found a new urologist that said it was okay and have been doing the shots for 9 months with no adverse effects. However, the fear of recurring cancer does enter my mind around PSA testing time.
My ED progress has hit a plateau with no improvement for the last 2 months. I hope this is not the end of progress. I take Viagra, L-Arginine and Trimix in small doses and can get a very satisfactory erection every time. If I have to stay on this routine for the rest of my life, it will be okay because I am still on the good side of the sod. My urologist told me going into this adventure that I might possibly be as good as but no better than I was before surgery. I guess he was right about that part.
Finally, I have proved to myself once again the importance of attitude in this fight. I am determined to stay focused on the positive things, help other people as much as I can and keep my head in the present.