So it’s been 96 months since my radical prostatectomy on 4 January 2011. How am I doing?
Status
My PSA resumed its upward climb last month after a brief hiatus between April and August. It certainly wasn’t unexpected, yet I was holding out hope that I could have had three consecutive PSA readings at the same level. It just wasn’t meant to be. That means that I’m one step closer to having to make a decision about what’s next.
Emotions
At this point, I’m at peace with where I’m at regarding the cancer returning. What’s actually been gnawing at me since my last post like this six months ago is something completely different—relationships.
Relationships require effort and commitment by both parties and lately, I’ve been asking myself the question, “At what point does one stop investing in a relationship when you get little or no return?” I don’t know that I have the answer to that question. I don’t want to burn bridges, but time is the most precious thing we as cancer patients have, and we want to invest our time as wisely as possible.
The sad thing is that I’m beginning to ask that question of the people who are the ones that I’ll need to turn when the cancer advances to the point where I’ll need assistance. (Remember, I’m single and the thought of facing this alone scares the piss out of me.)
Incontinence
Speaking of piss out of me, let’s talk incontinence. (Sorry, I couldn’t resist.) I have noticed a slight increase in stress incontinence episodes and, if I’m perfectly honest with myself, I would attribute that to the fact that I have gained weight again. I really think there’s a correlation there, so I’m going to work on losing some weight and see what happens.
I’m still 90+% dry, but when I sneeze, cough, or lift something of even moderate weight, the likelihood of a few drops leaking out has gone up slightly.
The other time that I have issues is immediately after emptying my bladder. (I don’t know why I haven’t talked about this before, but it’s been an issue for quite a while.) If I don’t go through a little routine at the urinal to “milk” any residual urine from my urethra after emptying my bladder, the chances are good that I may have a squirt of urine as I’m putting everything away.
Sexual Function
My ability to achieve decent erections has remained pretty constant through the last six months. I’m in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Some days I can get lucky and get in the 90% erection stage, but those days aren’t common. Of course, all of that is without any chemical assistance.
Summary
I’ve got a lot on my plate in the months ahead. I’ll continue to research imaging trials and salvage radiation in anticipation of my next PSA test in April. I’ll also evaluate my relationships, looking inward first to see how much of this may be my problem, to see where I should invest my precious time. I have no doubt that 2019 will prove to be an interesting year.
Dan's Journey through Prostate Cancer 
Hi Dan, that is a lot to contend with. I hope 2019 will work out well for you, without these issues dominating your life. Cheers, Phil
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Hi Phil,
Thanks! Happy New Year to you. Reading your latest post, it sound as though things are off to a decent start for 2019 but you still have a lot on your plate, too. Here’s hoping for the best!
Dan
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A Happy New Year to you Dan. Your latest blog was thought provoking as usual. I apply the questions you raise and are wrestling with to my own situation which is a valuable service you provide for followers of your blog like me.
Your concerns for the future also make me wonder about the amount of energy and thought we or I put into anticipating our future. Particularly the more pessimistic outcomes.
Somehow I need to make sure I don’t spoil the perfectly good days I have by worrying unduly about the possible negative outcomes that the future may or may not hold for me and which I can do very little about. On, the other hand, I don’t want to bury my head in the sand. There are options in treatment and timing of treatment that I do need to keep up to date with.
Prior to having PCa I worried about all sorts of possible negative problems in my future. Dementia in particular because my father in law and others I know ended up with it.
The future is not known to us and speculating on the many many possibilities, especially negative ones, casts a shadow on our relatively good present days. It’s a question of balance I guess.
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Hi Charles,
Thanks for your comment and for sharing your own thoughts. I understand perfectly the need to achieve a balance between not dwelling on this and our futures every waking moment versus doing the research that will allow us to have more days. All of us keep striving to achieve that balance, and some days we succeed better than others. That’s okay.
I will admit that having this increasing PSA and recurrent cancer has brought more focus to me. I can’t say that I dwell on the potential end result because, hell, none of us are getting out of here alive, whether it’s the cancer, a heart attack, or the Number 7 bus that gets us. But, for me, it has begun to have me focus on what do I need to be spending time on and what isn’t worth that investment of time any longer. It may seem to be a very analytical approach but, hey, have you read my blog?!? 🙂 I’m a very analytical guy and that’s just the way I’m wired. I’m also a quite cautious guy and don’t want to cut anything out prematurely. Again, a balancing act…
Well, that said, I wish you more positive days than negative days in 2019, Charles!
Dan
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Thanks Dan for taking the time to give me a rich reply and yes, our characters will determine how we respond to the challenges PCa throws at us.Charles
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Dan, hang in there one day at a time! You are very thorough in your research, and probably are aware of this site, but I will post it to you anyway–maybe someone else will benefit (link below). It is good that you are staying on top of your psa levels, and can “catch” any possible cancer return quickly and early to “nip it in the bud”! My Dan is now 3 weeks, and 3 days, post-surgery. The biopsies came back clear for the lymph nodes, but the whole prostate was cancerous–the Dr. said it was right at the threshold of escaping the prostate. His pre-surgery psa levels were 7.99 and 7.1, and the 12-core biopsy came back all 12 positive with gleason scores of: 8 @ 3+4=7; 2 @ 4+3=7; 1 @ 3+3=6; and 1 @ 3+3=7 (don’t understand the math on that last one!). Going for the first post surgery psa on 01/21/19 and then again on 03/21/19. For some reason the Dr. has not staged the cancer–or at least has not told us–maybe not enough info. yet? waiting on follow-up psa? At any rate, we are always hopeful, and speaking of that–my sister has a friend who is living with prostate cancer and is doing very well, he is 92 yrs. old! He is doing hormone therapy, and said the only issue he has with it is the hot flashes (we women are used to that!). Still has all his faculties and humor, I’ll have to ask her to ask him how long he has been diagnosed.
Thanks so much for the updates, always keeping you in prayer. Mary
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Hi Mary,
Thanks! Sounds like Dan is lucky to have had the surgery when he did. I hope that he’s having a speedy recovery. Great news on the lymph nodes coming back negative! It may take a couple of weeks for the full pathology report to come back. When you see the doctor on the 21st, I’d ask about about positive surgical margins, seminal vesicle involvement, or extra-capsular extension.
I’ll keep taking each day as it comes, and I’ll be thinking of you and Dan. Let’s hope you have a great, healthy 2019!
Dan
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While there is life there is hope. New treatments just around the corner. My thoughts are with you and your man as you start this journey.
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Here is the link I spoke of: Prostate Cancer Foundation—https://www.pcf.org/about-prostate-cancer/diagnosis-staging-prostate-cancer/psa-rising/
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Hello Dan,
I’ve read all you post in these post-op posts, and I’m certain that you’ve helped many of the thousands who do likewise, to compare their experiences with yours or to simply understand what could be ahead on the road they too travel.
So thanks to you for this almanac of experience.
96 months is 8 years and into your ninth. That’s a positive bit of history to be acknowledged!
As for me, now just 33 months post-op, but at 70 years old, having a slight advantage of cancer-free years pre-diagnosis, I thought I’d give you a little of my view from here in the UK.
My Gleason score was high and it was deemed very aggressive so no choice but to have the -ectomy. One (or two) of the urethra/bladder stitches was not as sound as should have been so there was a small continual bleed into the abdomen for days, so I had a drain in my side for an extra week. There was also a lot of semi-coagulated blood through the catheter for more than a week, the (huge) catheter was in for a month or so. And because of a potassium overload (making possible the danger of heart problems, I was readmitted to hospital under observation.
Urine incontinence after a few months almost completely disappeared. Similar to yours, it is only a vicarious problem during the day after exertions, but I have periods of several days at a time when I wake up in the mornings a little wet. I haven’t rid myself of the pad on the bed, which us a disappointment.
The other major disappointment is orgasms. ejaculating urine has put a dampener (sorry) on sex and my wife went off the idea of sexual Intercourse – quite understandably – very early on. Even though it is a small amount and even with a condom. Erections are pretty strong, but last only a short while without the use of Sildenofil (Viagra).
PSA is undetectable coming up to three years, with 4-monthly bloods.
I tend not to ponder over it all, apart from continuing the pelvic floor exercises in the (so far vain) hope that 100% continence will eventually return.
Thanks again for the great service to others from your blog.
Here’s to a positive, better New Year 2019. 🍷🎉
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Hi Al,
Thanks for your kind words about the blog and for sharing your story. It’s been interesting to see that there are some commonalities across patients, and then there are things that are just completely unique to each.
One of the reasons that I’ve kept sharing my story for so long is because I, myself, always wanted to know the answers to the question of what it would be like 5, 8, 10, or more years down the road after treatment. I still want to know that, especially regarding salvage radiation therapy. I can find plenty of information about the side effects during the treatment, but far less information about any issues 3-5 years down the road. (There’s some information out there, but not much.)
Aside from the incontinence issue, it sounds as though you’ve made great progress otherwise. Hopefully you can get to the point where no pads are needed at all.
Thanks again for sharing and have a great 2019!
Dan
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I may be totally out of line here, but here’s my reaction to your “friends” issues. If people really care about you, they’re willing to invest time in you. If there are issues with that now, they’ll only get worse for the people who only want to be peripherally involved as you get sicker. You seem to have very good judgement. Trust it. Don’t put anymore effort into people who don’t fully reciprocate. You will find people to help you as the disease progresses, just let it happen.
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Thanks, Jim! Not out of line at all. It’s pretty much exactly where my head is at in the whole thought process. BTW, I truly appreciate YOUR support through all of this. It’s been incredibly helpful.
I hope that you’re doing well and continuing to make progress in becoming more mobile again.
Dan
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I’m going to post an update for all before long. Lots has happened
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Hi Dan
Sorry to hear your PSA is climbing.
Did you have zero readings after treatment or was there always some residual PSA?
I’m now 6 months (only) post operation. PSA zero. I cant bear to think of it reappearing.
Paul
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Hi Paul,
Thanks. I had undetectable PSA readings for just shy of five years after my surgery when it reappeared. Needless to say, I was cruising along thinking, “I got this licked!” then, BAM! it’s back out of the blue.
I hope that your recovery is going well and that you don’t see a PSA ever again.
All the best,
Dan
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Hello Dan,
I’ve just recently found your blog and am very thankful to you for sharing such detail from your experience. I still have quite a bit of reading to do, so you may have covered my question and I just haven’t seen it yet.
I was diagnosed in Dec., similar numbers as you but with 4/12 samples positive. Currently my 2nd opinion is underway, cells sent to Johns Hopkins, and I expect their report in a few more days then I’ll meet again w/ my Dr to discuss.
The question for you or anyone else with experience is physical activity after treatment.
Dec 1st I earned my Black Belt in Krav Maga (Israeli self defense system – mixed martial arts – if you aren’t familiar). Dec. 10th I had my biopsy. I fully understand the bladder control aspects, but I’m concerned about bladder/urethra connection. Do you feel that you’ve healed to the point of doing more physical activity? In my case sparing and exercise at the level of CrossFit. We don’t spare at 100% and typically don’t get hit too hard, but the potential to get kicked, kneed or hit in the stomach is certainly there.
I’m struggling with the thought that I’m going to have to give up Krav. Do you feel that your body (at the surgical areas) could take heavier exercise?
Again, thank you so much for your excellent blog and generous amount of information, you’ve been extremely helpful as I plan my approach.
Keith
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Hi Keith,
Thanks for your comment and kind words. Sorry that you’ve joined this club.
What have your doctors said about resumption of such physical activity after surgery? I know that from my own experience, I was kind of babying my groin area for a good three months after surgery.
Personally, for me, my bigger concern would be the incontinence. The more physically active I am, the more likely I am to have episodes of stress incontinence. And that probability goes up the later in the day and the more tired my body is (we have some functions at work where I can be on my feet at a major event for 6-8 hours and I can pretty much count on having some leakage by the end of the day as we’re putting equipment away.)
I wish I could be of more help to you, but I just don’t feel qualified to speak to the healing time needed to where it wouldn’t be a concern for you.
Wishing you all the best,
Dan
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Hi Keith, sorry to welcome you to the club. I am 10 years down the track and still have some very minor incontinence on rare occasions. I wore pads for a few months after surgery but have not needed them for many years. Still, there is the occasional “spot of shame”! I believe your martial arts will help to keep you fit and strong and that can only be a good thing. Don’t be ashamed to ask people to go easy on you for a while. Best of luck for your journey, it is both a journey and a lucky dip. Les
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Hey Dan, thanks for the reply.
I’ve had the initial, post biopsy meeting w/ my Dr. where he introduced the various treatment options. I’ll be meeting again in a couple weeks with more questions. I’m still trying to decide surgery vs radiation, but surgery seems the logical option.
I’m trying to come to terms w/ lifestyle change and the information you’ve given about your experience with incontinence has been extremely helpful.
What’s coming with come.
Thanks!!
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