Don't ignore the SE's

I have mixed feelings about making this post, because I don't want to scare anyone away from their designated course of treatment, but on the other hand I do want people to realise that things don't always go according to plan.

I know my experience is unusual, but you need to know it can happen and has very significant consequences.

I did not come across HW until well after my diagnosis and treatment and really went into the whole process with very little knowledge, and readily accepted the plan put forward by my Uro surgeon. I had a friend who was diagnosed, refused virtually all treatment, relying on his strong religious faith and who died within 3 years of diagnosis. That very much coloured my outlook.

I was originally diagnosed as G9 and on the advice of my Uro decided on aggressive surgery with wide margins. I know now that the majority on here would have said surgery was pointless, but I didn't know that at the time.

Following surgery I was re-diagnosed as G7 (4+3) with tertiary 5's. Surgery also revealed that the capsule was breached and there was a positive margin. Based on that I also accepted the advice of my Uro that I should undergo radiation. To be fair he did advise that I should be completely continent before doing that as radiating too early might result in long term incontinence. My surgery was in August 2013 and radiation was planned for January 2014. By December I was almost dry and, still scared of cancer spread, I convinced myself that I would be fine for radiation.

At around the same time, two PSA counts went from .03 to .07 so HT was also commenced,

At the time of radiation I did still have very minor stress incontinence, i.e. would leak if I lifted something heavy or coughed badly, but was mainly dry. Completed radiation with no major problems. Minor rectal and bowel issues, but no big deal.

Then suddenly in May, while moving some heavy paving stones, I had a major leakage and have leaked ever since. I can only assume that the radiation caused some further weakness to the sphincter and just took a bit of time to take effect.

I also developed a weak stream. Memory is fickle, but I can't be certain that it was not weak following surgery, when I did have a problem when my catheter became loose and pulled down into the urethra with a partially deflated balloon. Had to be replaced. In any event following a cystoscopy, I was diagnosed with strictures, partially blocking the urethra.

With continued leaking I approached my Uro to look at the possibility of an AUS. He decided that the strictures complicated things and referred me to another Uro specialising in continence issues and particularly with strictures.

Following a further cystoscopy by him, I went into full urinary retention, and after 3 weeks with a urethral catheter, I had that replaced with a Supra Pubic Catheter (SPC), which I still have. However, the retention is not 100% and consequently I still leak heavily. Sometimes I can pee normally, at other I have to use the catheter.

The stricture man now wants a Urodynamic study to determine exactly the cause of retention and leaking. Due to a comedy of errors, that can't be done until February 2015 and I have a follow up with him a week later to decide on a course of action, however he has already told me that I will likely have to have a Urethroplasty and will then need to wait 12 months!!! before I can consider an AUS.

Ignoring the pain and discomfort I can expect from the Urethroplasty, this whole thing has become a nightmare.

I have an SPC which, while better that a urethral catheter, is still very uncomfortable and limits the amount of activity I can undertake (even walking) and my leakage which is around 300ml per day has completely decimated my social life and looks like doing so for at least another 12 to 15 months. I have had to suspend my beloved golf and daily 5km walk. Having a social drink is out of the question. While not quite housebound, I don't venture very far or for very long. Haven't been to any of the grandchildren's sporting events for a while and I really miss that. Do plan to resume that, even if it takes a bit of pre planning.

I relate all this not to frighten anyone, but to make people aware that these things can happen. I think we all tend to think it won't happen to us. I know the incidence of severe SE's is relatively low, but how many of us ever expected to get PC. Well we did, and we just might get major SE's. Please realise, it could happen to YOU!!

Chas.

PS I suppose the question is, had I known all this was going to happen, would I have changed my treatment? Hard to say. If someone very trusted could have convinced me that Brachy would have done as good a job as Surgery, then I may have reconsidered. I know someone who has just had Brachy and that failed, so where does he go now? Fact is I KNOW that everything that could be done to rid me of cancer was done, so I can be confident that I didn't under treat, and I think for me that is the main game.

Pratoman,

Without saying so, I guess I had you in mind when I posted this. I know you are inclined towards surgery and just wanted you to be aware, but I think you are in a much better position than me.

With a GL 6, your surgeon can be far more conservative than mine and chances are you won't need Adj RT. If you should eventually need SRT it would be well down the line and the continence issue shouldn't be a problem.

I wish you luck with whatever you decide. I am sure you will fare well.

Chas

You put a lot of Aloha in that post Chask. It takes time and thought to construct a piece like that. Yours is not an anomaly, it happens a lot. I just which some one had warned us all when the paradigm shift to a totally money centered society would begin. Ya know, a heads up to adjust our game.

Chask, well written and I feel you are being very objective. Reading it made me think of the fine line between side effects and complications. My feeling is that your story has both, complications resulting from SRT (strictures) and side effects from surgery (weakened external sphincter). Like I said a fine line and open to interpretation.
When we make our treatment plan I guess it's based on the perfect scenario, surgeon has a good day, no surprises etc. then things happen and we second guess ourselves, when in fact it's water under the bridge. In my case I TRY and say "well that didn't work, what's next"), followed by some self pity of course.
Another point is what Pratoman mentioned, "what if you had done......"
The time for "what if" questions are pre treatment, "what if I do this" versus post treatment "what if I had done that". Life is full of those questions and we really never get the answers.
Chas, I think you have your head on straight, not second guessing and wish you the best in the future. Again, nice thought provoking post!
Cheers, Doug

For those of you currently making your treatment decisions, please bear in mind that while Chask (and to a lesser-extent I) can tell you what it is like when the surgery and radiation go sideways in terms of side effects, we are only individual data points, as are the guys who are continent when the catheter comes out and never experience any erectile dysfunction after surgery. You need to know the odds for the treatment options you are considering but you should pay the most attention to the stories of guys in the middle of the distribution since they are the most likely to tell you what to expect. You should have contingency plans to deal with results like Chask's (or mine) but you should remember that nine out of ten guys do better in terms of side effects. Most guys do dry up eventually.

Prato - Will be very interested in hearing your thoughts after your RO meeting.

Yooper - Your comments on adjuvant radiation, either post surgical or radiation, puts things in perspective. I wasn't aware there are "viable" radiation options if you had something other than surgery so your comments were very helpful. Albeit more confusing now on which path to follow but what else is new.

I also have an RO meeting later this week to hear the non-surgical side of the story.

Chas, again an excellent thread as it has provided lots of good conversation and input. Your historical narrative will also be of great value for others.

Graytech, to the point of options if BT fails - as I did my own research towards my choice of treatment - I also considered the "what if it fails" and to that end continued my studies towards what options were available. Although highly unlikely that my initial treatment will fail, my own "Plan B" would involve Dattoli in Sarasota, Florida. Here are some thoughts along those lines:

"Patients experiencing recurrence following single modality radiation are often eligible for additional treatment using a different form of radiation. For instance, the man who had EBRT alone may find benefit from a small dose of DART followed immediately by seed implant (depending on the location of the active cancer cells).

Men who had seeding (brachytherapy) alone might benefit from additional seeds of a different isotope. If he had Iodine-125 seeds, he might now have Palladium-103 seeds (referred to as a "crossover isotope"), or vice versa, and DART to the surrounding periprostatic tissue and relevant lymph nodes. Again, the important determining factor is pinpointing the location of the active cancer cells.

Men with positive lymph nodes may have radiation to the lymph nodes alone using the targeting sophistication of DART.

It is possible for these men to have surgery following failed radiation, but in our opinion that would be useless as the spread of cancer is typically not only in the gland but also outside it so that removing the gland would not solve the problem."

Chas / Graytech / Prato I continue to wish you all well!

I have seen a number of studies showing similar cure rates between Brachy and RP. AND YET THE MSKCC Nomograms show a different story, at least with the numbers I've inout. This is something that I def am going to ask the RO about next week

Chask said...
Paul, I don't see any hijacking. My intention was to highlight awareness of SE's and consideration of alternatives.

Have to admit I have also found this thread to be cathartic. Up until now I have felt more of a taker than a giver of the HW forum. Just happy if my experience can help others make a more informed decision.

Chas - yes, this thread is "giving" - thanks for your part in "Paying Forward!"

Great post! Thanks I am going to make sure that my little brother Ichabod sees this thread as he was diagnosed with G6 last week and meets with URO tomorrow!