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Kenneth D. Miller Male Tomball,tx, United States: Share

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ED and incontinence post-treatment

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Kenneth D. Miller left a comment for Angela Jenkins Aug 16

Angela Jenkins left a comment for Kenneth D. Miller Aug 16

Kenneth D. Miller left a comment for Angela Jenkins Aug 16

Angela Jenkins left a comment for Kenneth D. Miller Aug 16

Angela Jenkins left a comment for Kenneth D. Miller Jun 15

PaulC left a comment for Kenneth D. Miller Jun 15

Arnon Krongrad, MD left a comment for Kenneth D. Miller Jun 15

Kenneth D. Miller left a comment for Angela Jenkins Jun 15

Profile Information

Have you been diagnosed with prostate cancer?: yes

What brings you to the New Prostate Cancer InfoLink social network?: link provided by person on rp@prostatepointers.org

Would you help us grow the network? Would you tell others about it?: yes

About Me:: I am 61. Discovered prostate problem through diligent PSA monitoring. Went from about 4-6-8 over a year. Biopsy 6 of 12 all3+3. Prognosis very good for total cure with removal. Had RP on 4/14. Recovery quick initially, then 2 bouts of staph infection. OK now. Pathology disappointing. No SV/LN tumor-good, but two small extracapsular occurrences. He didn't get it all. Now searching to study what comes next and side effects.

Update on About Me:
I had two positive margins not two extracapsular. I did have a very small extracapsular occurrence with a small tumor.

Just now over the second bout of staph. Came out all clear this Friday after 2 weeks on sulfa drug. So I was able to finally draw the blood for my first post op PSA. Results to follow on Monday June 9 with first Post op doc meeting on June 11. Will update following the meeting for next step.

I believe the doctor will not opt for immediate IMRT. I met him in the hall at the time of the urine sample for checking the infection. I told him I was preparing for radiation. He put his arm around my shoulder and said "no we are not going to worry about that now". He said he is not in favor of adjuvant therapy for a case like mine (though I don't have the PSA yet) with low grade and two small margins. He said he believes that "salvage therapy works just as well". So he is in favor of watching the PSA and seeing what happens. His opinion was that I had less than a 25% chance of cancer recurrence given my stats. So these odds are good and the potential effect of the therapy is potentially bad enough that it would be worth the wait if I had a 75% chance of staying clear.

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At 12:41pm on August 16th, 2008, Angela Jenkins said…: Sorry to hear about your mother. I'm sure you are sick of hospitals. I am very glad to hear of your PSA results. Since surgery was only 4 months ago, be sure to manage realistic expectations. Why don't you update your profile above so new members will know how you're doing? Jimmy is now 9 months post surgery. Time makes all the difference in the world. His incontinence is 99.9%. The ED, we're starting to make some progress in that department :-) Remaining positive and keeping a great perspective on life helps tremendously. I'll check back with you soon.

At 9:28am on August 16th, 2008, Angela Jenkins said…: Ken - how are you doing? You should probably be going for your next PSA in September (we go every 3 months for the first 2 years). Let me know what your score is. Check out the groups and discussions - we've got new ones starting every day. Stay in touch.

At 6:15pm on June 15th, 2008, Angela Jenkins said…: Keep us updated. PSA testing time is always a little anxious even in the best of prognosis. You are indeed very fortunate to have caught it early. We'll stay in touch.

At 4:53pm on June 15th, 2008, PaulC said…: Congratulations, Ken, on the wonderful news.

It sounds like the continence recovery is on a good track. Even if it's not 100%, you'll gradually learn about those "special" situations where extra care is needed (for me, it's getting up out of a chair with an unemptied bowel).

The total ED at 8 weeks is frustrating but fairly typical for us who have the slow trajectory. My advice is to experiment a lot; find the pill that you tolerate the best, develop a varied "workout routine" :-) that includes exercise at least several times a week, and mentally prepare yourself for the likelihood that your progress will have its ups and downs. (ahem)

At 1:51pm on June 15th, 2008, Arnon Krongrad, MD said…: Excellent. Thanks for the update. Tell Brian I said Hi.

At 12:25pm on June 15th, 2008, Angela Jenkins said…: Kenneth - What great news. So you're about 8 weeks out. The continence sounds like you're doing well. ED - be patient. It may take a while. Let us know about your next PSA. I assume you're going every quarter now. Thanks for keep me updated.

At 11:19pm on June 14th, 2008, Kenneth D. Miller said…: June 14 UPDATE!! A WONDERFUL REPORT FOR ME
Post op PSA was .003!! Even with 2 positive margins. He said he had examined the pathology slides and the margins wer very small and it appears that they did not leave detectable cancer. Doctor Miles had a very good prognosis. He said that with a PSA this low, there was a very remote chance of any recurrence. In fact, he said he has never had a patient with a recurrence that has a non-detectable result at this stage. He set me up with an appointment 6 months from now! I am so happy and relieved. Now I don't need to worry about the effects of IMRT, because I won't have to do it ever, hopefully.

I wish everybody else the best results too.

Now I just have to work through the remaining recovery efforts. Continence about 90%. Improving slowly day by day. ED total at this point, but in progress with all the therapies pills, shots, VED. What a regimen to go through. But, much more tolerable now that I know I can go forward without a setback from further cancer treatment.

At 4:30pm on May 28th, 2008, Kenneth D. Miller said…: Hi Steve--all the exchange and a bunch of reading myself is certainly leading me to that conclusion too. I don't think I will have a hard time just going ahead right away with what they tell me to do. I think that Miles will probably have me see an oncologist first thing for consultation. I will move on with that if it is recommended. And, I will take the aggressive approach I believe rather than take a chance with wait an see to find out if I am one of the lucky 40-50% that would not have recurrence. Let's see how my PSA does and what the docs say about it all.

Thanks for the feedback on Leah. She was very encouraging and helpful.

On a more "as the world turns" perspective, I did finally change my diaper. I feel much better now and will last the day. I thought you would appreciate knowing (LOLOL)
Keep in touch

At 3:29pm on May 28th, 2008, Steven Hess said…: Sticking around with a good QOL is the name of the game. I know you heard from Leah and she is very astute and very well informed and a world-class advocate not only for her husband but for all of us walking wounded. Without any qualifications to comment, common sense suggests earlier treatment beats late treatment every time

At 9:31am on May 28th, 2008, Steven Hess said…: Ken
You have it right. I am so sick of soaked "pull ups" and don't even get me started on my longing for Bill Clinton-defined (traditional) sex which shows no signs of happening any time soon at 7 weeks post-op. But I am a realist and it's all better than being dead.
There is no getting around the fact that this is a life-altering event for all of us and I sure would prefer to be on the Porsche social networking site than here, but we will all persevere, do what we have to do and get through this.
I noticed we had our RP the same week, more or less (I was 4/8).
How are you making out on the endless "drip"? You are 9 years my "junior" (lucky you) but I seemed to have just turned the corner the last week with a very noticeable improvement. Ain't that a pisser :)
Steve