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Posted 4/3/2012 8:15 PM (GMT 0)

I have failed my husband by not managing to persuade him to speak to several surgeons before RARP in January which went pear-shaped. He had anastomotic leak and is 100% incontinent 3 weeks after catheter removal. (changing pads every 30 - 60 mins). Catheter was in for 56 days.

Now he possibly needs adjuvant radiotherapy, should we speak to more than one specialist and are there questions we should ask? It seems to me like quite a lot can go wrong! I feel like we got the wrong surgeon - can we avoid getting the wrong radiotherapist?

Any advice gratefully received.

Posted 4/3/2012 9:45 PM (GMT 0)
I had a similar situation, and still don't know whether to blame my surgeon or not. Stuff happens, and very little goes perfectly in the real world. In the immortal words of General Buck Turgeson: "You can't condemn the whole program because of one little slipup!" (Dr. Strangelove) I did have a very good recovery as to continence, so should he get credit for that? I don't know. Is his skill responsible for getting all the prostate but saving as many nerves as possible? I don't know. I still like him, I still see him, but I sure would have preferred not to have had a catheter for 5 extra weeks, and I have no idea whether it was his "fault" or not. As for seeing another specialist, you absolutely should, if only for your peace of mind. And for questions to ask, scour this site well for that information. I did notice the downgrade from G8 to G6, that's fabulous! Best of luck to you.
Posted 4/3/2012 10:59 PM (GMT 0)
It is important for a radiologist to have at least 250 procedures for prostate cancer.
Good luck,
JT
Posted 4/4/2012 12:23 AM (GMT 0)
Despite your husband's problems, and I feel for him, not sure you can be quick to blame the surgeon. Any RP is complex, and problems can develop. I had a lot of surgical issues with mine, and was on my orignal catheter for 63 days. Fortunately for me, I didn't have any serious incontinence issues, but unfortunately, I fought 2 years of constant stricture issues.

Usually, they advise me after surgery, to get as continent as possible before doing radiation, because radiation can stall off improvements in continence issues. I don't know all his issues or specs, but it might pay to hold off on the radiation until there is some marked improvement in his incontinence issues. This is something that should be talked over with his doctor(s).

David in SC
Posted 4/4/2012 12:24 AM (GMT 0)
P.S. You have not "failed" your husband, don't put that guilt on your shoulders. Things happen, even with the best of surgeons
Posted 4/4/2012 2:46 AM (GMT 0)
Getting as continent as possible before starting RT was very high on my uro/surgeon's criteria.

I was using 1 or 2 depends pants and 8+ extra heavy pads a day for three months, then things got a little better without explanation. At 5 months out I was able to stop using the pants, but even up to the start of RT, never got below 1 pad a day.

You should ask for multiple RT opinions. My insurance wanted at least two, and was willing to pay the costs when I asked about it.

Great surgeons can have bad days, and marginal surgeons can have great days. I was basically incontinent, but a guy who was a couple of weeks after me (same doc, same hospital) was stone dry from day one. I talked to 5 surgeons before making a choice, but much of the choice was governed by my insurance coverage and travel issues. You didn't fail anyone.

Posted 4/4/2012 6:42 AM (GMT 0)
Jane
Firstly - there is no reason to blame yourself for the situation your husband is in.

Secondly you mention Adjuvant RT, but I see no mention of what your husband's current PSA is. Has he had a post surgery PSA test done? Post surgery RT depends largely on the PSA level not the pathology mentioning positive margins with a T2 etc. But if RT needed then good idea to get a good RT doc who knows about dealing with prostates and not just RT in general.

Clearly a bladder neck tear is not a helpful complication, and I'd say it'd be hard to work out how to apportion blame if there is any blame for that happening. (Same as my surgeon is not to blame for me having ugly, wide, red, itchy keloid scars)
As for recovery/continence I think he is still so close to having two surgeries in the area to be sure how things will be later. He may not end up completyely dry, but I am sure it will get better.
Also having a catheter in for a long time can mean things inside take a bit longer to settle down. It's almost like the bladder need physical therapy to deal with a muscle not having been used for a while the same as with a broken bone after the cast comes off.

Best wishes to you both
Alf
Posted 4/5/2012 10:49 PM (GMT 0)
Thanks for replies. I will most definitely shop around for best radiologist if and when needed. 8 week PSA was 0.269 which is good (down from just over 6 pre RARP). But it needs to be <0.15 on Tuesday. Fingers crossed.

I am praying the continence improves and guess I am just being impatient. I am not a good waiter! I am a do-er!

So want to be prepared for radiotherapy and even reconstructive surgery if necessary.

But I do take all your points and will wait for improvement. It's hard when you have a husband who doesn't want to talk about it! And even harder when you are the patient I'm sure!

Thanks so much. It means a lot to get answers from people going through this.
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