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One Month Post Surgery

bob33462
Posts: 78
Joined: Feb 2016

I am doing much better and no pain at all. Still incontinent, but improving there also. Slept without padded underwear the other night and the padded sheet was almost dry in the morning. I did the same thing the next night and the padded sheet was wet- go figure- :)

Went to a Urologist at Cleveland Clinic Florida today, not my surgeon at U of Miami, and he remarked that if I had not had surgery and gone with RT my positive nodes probably would have remained undetected. He had originally advised me against RT because of my voiding issues. The surgery did not correct that voiding, but my urine stream is much better.

Of course, knowing I had two nodes positive doesn't solve anything. Waiting to take blood test in two weeks and see my PSA results and decide on plan of action.

His take is, microscopic cancer cells are out there away from the prostate bed so RT to prostate bed and remaining nodes may be fruitless.

My surgeon, who has not seen PSA results yet, is leaning toward Lupron and RT. I see him again in August. Will have another PSA test before seeing him.

Bob

Will Doran
Posts: 207
Joined: Sep 2015

Bob.

Sounds like you are making progress.  Good for you.  I was a PSA of 69 with a Gleason of 3+4 - 7.  Had Robotic assisted Surgery (Dec 2013). They found , post surgery, that I had one lymph node involved with a spot that was so small that it didn't show up in my pre-surgery MRI's. My treatment continued with 8 weeks of Radiation, (5 days per week) and two years of Lupron. My PSA dropped to <0.010 in a couple weeks.  I hope yours does the same.   As of this month, May 2016, My PSA remains at<0.010 and I have been off of the Lupron for 1 1/2 months at this time.  My testosterone is starting to come back up.  They had me knocked down to a Total Testoserone Level of 17.  Normal is between 250 & 1,100.  My "T" level has come back up to 134 at this point, which is still very low.  Even with the rise in Testosterone my PSA remains at "0".  I went through the same type of things with the leakage.  I still have to be very conscious of control at certain times.  I think that will always be with me, because my doctors had to make an incision in my bladder, because of a birth defect, in that my prostate was adhered to my bladder.  I'm trying medication (Myrbetriq) at this point.  It seems to be helping at some times, however the help comes and goes.  I have never been totally soaking a pad, just a drip now and then. Sometimes when I'm doing physical things like lifting or riding my Spinner Bike for long periods 70 - 80 continious minutes, I will leak.  My doctor says I have Male Stress Incontinence (as it's listed on my medical records). My leaking problem is so much improved, when compared to shortly after the surgery.  It was pretty bad at first.  I did do a couple of months of Physical Therapy for bladder control and that did help. 

So, hang in there.  Follow your doctors recomendations and please study all the side effects and know what you will go through.  I can't say that enough. We are hoping to hear that your PSA is down to "0".  And then, that your PSA will stay there.  Our cases are all different, and as my doctors keep telling me, we can never be sure that the cancer is completely gone.  But we keep going on and hope for the best.  My doctors are very happy with my recovery, but still make sure and keep the reality of my situation out front.  They try to keep me from falling into a false sense of security.  I appreciate that very much. 

So, Best Wishes for improvement every day and know that you are in my thoughts and prayers.

Peace and God Bless

Will

rooster02
Posts: 12
Joined: Apr 2016

Bob:

Our situation is about a week apart; we are both waiting for more healing and testing before the next steps in treatment can be identified. It sounds like you are making very good progress, good for you! My leakage is not as "under control" as you described yours, each of us will respond just a little differently in each step taken in this battle. I returned to work for the first time after surgery, three days last week. I hope to make my first full week back next. Small pockets; in the past it was phrase related to junk food, not now, a whole new meaning. Glad you are making positive progress, thinking of you, wishing you good PSA results.

Rooster02

bob33462
Posts: 78
Joined: Feb 2016

Will and Rooster

Thanks and Good Luck---

Last night I actually was almost all dry and today not too wet -- :) I hope I can get over this dripping - My guys are red as hell from being damp all the time - I have used Desitin and this helps some ---

In addition to the Kegels, I started other excercises - while laying down lifting my legs 6 inches off the ground and holding them up for a good amount of time-

Bob

 

 

 

Luckyfoot
Posts: 6
Joined: Mar 2016

I had open surgery at the CTCA in Georgia. Was given the option of HDR Therapy or Surgery.  At 55, I elected to have the surgery becuase I had hoped with a PSA of 5 and Gleason of 8, the surgery would send me on my way. Not!!! The surgeon descibed my surgery as difficult and had to "go wide!" Which I eventually realized meant there was some spread to the Lymph nodes. The Urologist referred me to the onsite Oncologist who recommended Lupron every 3 months for 1 year. My PSA yesterday was 3 and had my first injection of Lupron. I FEEL GREAT TODAY, but am very afraid of what is to come in the way of side effects and outcomes.  On top of everything else, the job I have been on for 3 years suddenly downsized and I was one of the casualties. I will have health insurance through the end of July, then I am on my own.  After attempting to be optimistic since the surgery, yesterday was very difficult for me. It seemed the reality of my condition really hit home.  Still incontinent and soaking pretty good day and night. Advised to do the Kegel exercises to help. Live in the Metro Atlanta area and think I could really use a GOOD support group.  I've attended the men's group at CTCA here, but both times attendance was low. Once it was only me and the facilitator. I am open for any suggestions on support or anything else that can help get me through this since my personal support network is very small.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I was going to suggest that you start your own thread but just realized that you did that already.

K_Fran356
Posts: 1
Joined: Oct 2017

I am the wife.  My husband had RT five days ago and still no flatulence or bowel movement.  He has been on IV all of this time.  He is walking and sitting up.  Has anyone in this forum had this problem?  Would really like to know about your experience.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi Bob,

Hopefully nothing but good healing and undetectable PSA readings from hear on out.  It took me about two years to fully "heal" after my RP.  Sound like thing are going good for you.

Lukcy don't give up, keep on healing & fighting.  Sounds like your surgery was a little more extended than planed, hope they got it all. I don't know of any treatments that don't have some side effects, just work through them the best you can. Most if not all of us either surgery or radiation have some kind of side effects.

Dave 3+4

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