Biker90's RRP Journey & Updates - Nov. 7, 2006 - July 18, 2007

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biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/18/2007 8:42 AM (GMT -7)   

 

Hello all you great people here on the forum.

 

My Cancer Summary thread got too long to be manageable so with Bluebird’s very able assistance we put this thread together as a place where I will post my updates.  Like pcdave and jetguy and others, I will edit this post with any new information I have.

 

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…

 

Jim

 

 (direct link ~ just click on the title!  Reminder to click on the REFRESH icon once there)

Biker90' Page.... Welcome New Friend :)

Biker90's Cancer Summary

Too old for treatment?

Why We Chose Our Treatment Option

 

 

11-7-2006

 Diagnosis

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.

 

 11-9-2006

 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............

 

11-10-2006 

 

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.

 

11/12/2006

 

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..........

 

11/22/2006

Decision Time

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.

11-30-2006 

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...................

12-9-2006 

Surgery

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.

Thanks again.................

  

 

12-12-2006 

Cancer Summary

 

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.

 

 

12-13-2006

 

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.

 

 

12-13-2006 

Freedom

 

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,

 

 

12-14-2006

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............

 

12-15-2006

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.........

 

12-16-2006

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.

 

12-28-2006

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.

 

 

01-03-2007

First PSA

Post-op week 4
PSA from sample taken on post-op + 22 days is 0.04. Yippee!!!!!!!!!!

 

01-12-2007

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....

 

02-15-2007

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...

 

03-07-2007

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...

 

03-15-2007

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.
 

 

3-21-2007

 

Continence:

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.

 

Potency:

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.

 

Depression:

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.

 

4-4-2007

 

4 months post-op PSA – 0.00  Yipppeee!!!

 

Continence:

          100%

 

Potency:

          0%

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.

 

Depression:

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!!!)

 

 

4-16-2007

 

Continence:

          100%

 

Potency:

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.

 

Testosterone:

          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.

 

4-17-2007

 

Continence:

         

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.

 

 

05-09-2007

Testosterone.

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 prescription 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.

6-9-2007

 

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.

 

7-18-2007

 

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?

 

 


Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
Next PSA on 10/17/07
 

Post Edited (biker90) : 7/24/2007 5:57:53 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/18/2007 11:11 AM (GMT -7)   

J Dear Biker Jim and Miss MaryLu,

Thank you for allowing us to walk with you on ~ Your Journey.

Heartfelt….      In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/18/2007 11:23 AM (GMT -7)   
Hi Lee, Buddy and Murphy,

You make our journey much easier with your knowledge, care and encouragement. We didn't want to take this trip but have found you and so many other loving, caring people. There are definitely upsides to PCa.

Thank you...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/19/2007 6:26 AM (GMT -7)   
Nice Jim, Real nice!!!
Your friend,
Pete
54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06, Erect, Dry & Lovin Life!!! I am's what I am and that's all that I am!!! 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 3/19/2007 10:57 AM (GMT -7)   
Jim and MaryLu, thanks for being our friends! hang in there Jim. you've come too far. Jeff and Kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/19/2007 1:52 PM (GMT -7)   

Jim:

This is a GREAT thread and will help many.  Continue to do well on your journey.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


mrsbiker
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 3/19/2007 9:32 PM (GMT -7)   
Hi folks, I'm Mrsbiker. I have enjoyed reading all the good advice , you people have given us. It has made our journey, so much easier.
Thank you, so much.

see you all latter.

MaryLu

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/20/2007 6:12 AM (GMT -7)   
Hi MaryLu,
You must be some Gal! Sticking by your man with all he's been through! I know that low testasterone thing is on tuff nut and he is a hell of a guy to be able to keep you close while dealing with it! A lot of people think that we, teh guys have it so tuff with this monster but I think its our partners who have the roughest ride of all! Thank you MaryLou and all wives and partners like you. We couldn't make it through this without you!!!!!!
Your friend,
Pete
54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06, Erect, Dry & Lovin Life!!! I am's what I am and that's all that I am!!! 


rj2bjj
New Member


Date Joined Mar 2007
Total Posts : 6
   Posted 3/20/2007 7:22 AM (GMT -7)   
Thanks for sharing.
Its nice to read about anothers journey, it does help.
My husbands father has also been diagnosed with PCa. (Kind of scary about what that means for our boys)
PSA: 6
DH (42) Prostate operation (nerve sparing) 2/2/2007
Follow up PSA: pending....
 
Take care
Ric and Jeninne.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/20/2007 6:59 PM (GMT -7)   
Dear Bluebird, Pete, Kat, Dutch, Ric and Jeninne, and the rest of you nice people,

It is a true pleasure to share this journey with such fine friends. Your kind words and the sharing of your stories keep me on the road to recovery.

I just updated the first post in this thread. There is some pretty heavy stuff there and I hope it doesn't give anyone a down time.

See ya all around...

Jim


Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/21/2007 11:29 AM (GMT -7)   

Jim “Our” Biker90 & Miss MaryLu “Our” Mrs. Biker

 

Definitely ~ heavy duty…. But a true feeling that comes with depression.  We are so thankful you shared this…~  it is part of the journey… and will help others to see the warning signs a little easier from reading your post.

 

Gotta make sure this stays a little closer…  so I’m adding it to this thread…..  It will always be here for those days the dark clouds “try” to overshadow our beautiful rays of “positive” sunshine…

*/////////////////////////////////////////////////////////////////

///////////////////////////*/////////////////////////////////////

///////////////////////////////////////////////////////////////

/////////////////////////////////////////////////////*//////////

* 

What a wonderful posting from mamaBiker!!!!!  Thank you!

Thinking of you & sending HUGS… too! ~    :-) Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 3/21/2007 7:25 PM (GMT -7)   
Hey Jim, we all need to know the truth. 'Nuff said? Hang in there, my friend.

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 3/22/2007 4:13 AM (GMT -7)   
Jim - no down time at all. life is life and you told it like it is (or was). you are a true man when you can tell it from the heart. God bless you and MaryLu! kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/23/2007 3:02 PM (GMT -7)   
Dear Friends,

Here is a poem that our son wrote. I hope you don't mind my posting it here.

Friendship is truly the greatest in life,
When you can come together,
No judgment, no misguidance,
Just people who have peace of mind,
I can honestly say that I have been given,
That gift of life that many have missed,
Their chance at true greatness,
For which friendship has kissed,
To many times in life we miss lead,
The people that cross our path,
The ones we find that we could count on,
Ones that in truth, we really do need,
Treat all who you meet in life,
With respect at the highest level,
For the return you receive,
Will be grace, fulfillment and freedom,
My true friends are able to see,
The gifts that I carry deep within,
They accept all my faults,
All my weakness, from them I have strength,
I give only my best to the ones I have in my life,
For that is what they give me,
Truth, compassion, laughter, no strife,
Friendship is truly the greatest thing in life,
Treasure it deeply and respect it,
With all that you possess,
Life will smile greatly,
On you it will give the biggest kiss.

We love you all,

Jim and MaryLu
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 3/23/2007 4:06 PM (GMT -7)   
And we love you.

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


1588ap
Regular Member


Date Joined Feb 2007
Total Posts : 32
   Posted 3/27/2007 5:35 PM (GMT -7)   
B9---you have helped me more than you will ever know---thank-you, I am so scared of this PCa-everyone says 'caught it early" lucky man but now I try to stay positive --feel like part of the woodwork today--
g
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
DaVinci 2/28/07
Post-op biopsy-Gleason 3+3=6 Stage 3Tb
Lupron shot 3/15/07, no PSA level yet.


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 3/27/2007 8:47 PM (GMT -7)   
Dear Jim,

Thanks for updating your post. We talked the other night about depression in the chat room. I remember an expert I know saying that a person who would never even think of hurting himself may cross the line in an instant when severely depressed. I have always remembered that, because it tells me something about the nature of depression.

I am very glad you are here. You have been a great help to us and we so appreciate your candor.

As Always,

Becky (and Burt)

Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery

Full potency, 12th day after surgery
 
 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/28/2007 5:05 AM (GMT -7)   
I love you guys too! Its been said many times before and still true. You folks have helped me more than you'll ever know! THANK YOU!!
Your good friend,
Pete
54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06, Erect, Dry & Lovin Life!!! I am's what I am and that's all that I am!!! 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 3/28/2007 6:43 AM (GMT -7)   
Thanks for being so real. You'll never know how many people feel less alone because of you. That's a very big thing.

All the best to you & MaryLu,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 3/28/2007 10:10 AM (GMT -7)   
I second the motion from Myman. Thanks Jim!
Tony

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 3/31/2007 6:09 PM (GMT -7)   
As some of you know from my postings on others' threads, I'm still in the deciding stage. I have re-read several times the journeys shared by Biker90, jetguy, and justjulie on three of the treatment options, and want to thank them -- and all of you -- for the candid and extremely helpful information. Not just about the procedures, but also about your highs and lows, uncertainties, fears -- all of your emotional journeys. I laugh and cry when I read what you've gone through -- I seem to be getting more emotional than ever these days. Anyway, I shared the three threads with my wife for the first time last night. Her reaction to this whole thing has been pretty amazing -- "OK, let's get with a program and get you well." She knows this is a "joint journey" and is ready.

Just wanted to say thanks again. You guys are great. I don't know how I would have been able to handle the last couple of weeks without the forum. Really.

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/4/2007 3:06 PM (GMT -7)   
Hi Folks,

I apologize for not thanking all who were so kind as to post their good wishes for me in the past week or so. I have not been up to par and will make it up when I feel better.

Good news, my 4 month post-op PSA is 0.00!!!!!!!!! Yipppppeeeee!!!!!!!!

Also, after some arguing and fist pounding, I am back on T shots again. Things will be better shortly and I will update my journey and thank you all then...

Jim


Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."

Post Edited (biker90) : 4/4/2007 4:09:44 PM (GMT-6)


djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 4/4/2007 4:45 PM (GMT -7)   
Hi Jim,
Congratulations, my T-Buddy, on your zeros! Many, many more! And, good deal on your resumption of T supplementation.

I am still waiting after one week of T to feel any difference or any increased energy. Maybe you and/or Pete of Pete's Travels can help me with when I should expect some noticeable effect.

I am curious to hear about why you had to pound your fist, with a T level of 48, and what arguements your doctor had against supplementation. When I talked to my doc BEFORE my surgery and BEFORE my biopsy, when I had a T of 63, he said that was "castrate-level" and wanted me to go back on T before anything was happening. He said if I came in with a T of 500, he wouldn't castrate me before and unless he determined that I had ADVANCED PCa. Therefore, he thought I should be eugonadal, not hypogonadal, for my general health. Feeling the way I did at 63 or even 166, I can't imagine how you must feel at 48. All the best to you, Jim!

Take a look, if you haven't yet, at the medical literature about T supplementation post-prostatectomy.
There is a Dr. A Morgentaler at Harvard Medical School who has published about this. To see his work, go the website: http://www.ncbi.nlm.nih.gov/entrez/ ,which is the opening page for the National Library of Medicine's computer search engine Pub Med (haha). Type in morgentaler-a in the search window and then, when you get the list of his publications, double click on the names line, and it will open a summary of the paper. He has said things like

" ...Publications have now reported no prostate-specific antigen (PSA) recurrence with TRT in small numbers of men who had undetectable PSA values after radical prostatectomy. Although still controversial, there appears to be little reason to withhold TRT from men with favorable outcomes after definitive treatment for PCa. Monitoring with PSA and digital rectal examination at regular intervals is recommended." Morgentaler A., Testosterone therapy for men at risk for or with history of prostate cancer. Curr Treat Options Oncol. 2006 Sep;7(5):363-9.

and
"...This historical perspective reveals that there is not now-nor has there ever been-a scientific basis for the belief that T causes pCA to grow. Discarding this modern myth will allow exploration of alternative hypotheses regarding the relationship of T and pCA that may be clinically and scientifically rewarding." Morgentaler A., Testosterone and prostate cancer: an historical perspective on a modern myth. Eur Urol. 2006 Nov;50(5):935-9. Epub 2006 Jul 27.

Keep us posted on how you are feeling and I will, also.
dj
dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder. One was 40% of sample, the others less than a mm. thick.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Pads-Not needed after about 2 weeks post-cath, but gotta go a lot more often.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
1st Follow-up PSA (11/7/06): <0.008 !!!; serum T: 195 - still OFF Androgel (at present). Low T may delay return of erectile function (in presence of one damaged nerve).
2nd Follow-up PSA (3/19/07): <0.003 !!!; serum T: pending
Testosterone Level (3/19/07): 163, down from November 2006!
Uro-Endocrinology Consult (3/28/07): Prescribed Testim gel 1% once a day, and recheck PSA and T-level in a month.
 


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 4/4/2007 5:56 PM (GMT -7)   

Jim:

Let's hear it for those "0's" !!!!  and take care.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/4/2007 6:34 PM (GMT -7)   
Hi again everybody,

I updated page 1 of my journey with today's events. I had to do that before I forgot most of the stuff that went on. It was not a pleasant experience and I am resolved to not repeat it.

Thanks to all of you who have posted you good wishes here. Bluebird, Jetguy, M.Kat of course are our mainstays and the backbone of this forum and can always be counted on for a helping hand up when things are down. My low T buddies, Pete and DJ always lift my spirits and thanks to DJ for the info on T therapy. Becky, Susan and Tony always have nice things to say and I really appreciate their encouragement. Puget is in the process of selecting treatment and I am glad he found us as a source of hope and information. And Dutch, the old hand at PCa always has hope in his messages.

Thank you all. I am looking forward to better days ahead...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."

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