I had my prostate removed last week at MD Anderson. Recall that I was diagnosed with oligometastatic prostate cancer (3 mets or fewer beyond the prostate). In my case I have had only 1 met at diagnosis - in the T8 vertebra. Diagnosed 3 years ago at age 53. Had radiation to the T8, early chemo, and been on Lupron since diagnosis. PSA was 227 at diagnosis, Gleason 4+4=8. PSA went to undetectable for about a year, then climbing to about 2 by year end 2017. Started Zytiga in December and PSA remains undetectable.
While certainly not pleasant, after 1-week, recovery from my prostatectomy has been ok. Some pain, but certainly manageable. Planning to have my catheter removed this Friday - then fly home from Houston to Atlanta.
I’ll post what recovery feels like as I progress, in case others are wondering what this experience is like. Certainly hope this procedure can help me maintain being in remission. And perhaps getting a holiday from ADT at some point.
Best wishes to my fellow PCa warriors and our loving caregivers!
James
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JamesAtlanta
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Thank you so much for sharing, James. My husband is in a similar situation (one bone met) and we are considering the same approach ---- prostatectomy to "debulk". We'll be following your progress and praying for a speedy, complete recovery and ultimately a CURE for you.
Thanks, James, I have been offered to be in a study at MDA called M1, which I might get an RP, but I will have to have my bladder removed also. I have been wondering how bad the recovery is from an RP
The recovery is not bad. Had mine removed in 2016 at age of 53. The catheter was more bothersome to me than the surgery recovery! Excersise is key to keep the muscle strength surrounding the area it's taken from..good luck
Not bad at all thus far. I had the surgery a week ago. Some pain, but easily controlled with extra strength Tylenol and/or Tramadol. The catheter is a nuisance, but is being removed on Friday. Mostly it’s just important to get up and walk a lot.
My understanding is that the next hurdle will be my regaining my continence. Can’t speak to that yet, but I’m optimistic. I’ll let you know.
Good luck with your decision! Please let me and our other members know how we can help.
to tell the truth, my incontinence has gotten better, ever with the radiation. hope it stays what way. today they started my boost radiation. which means smaller area to zap. keep the faith
You are still young James and the only good thing about that is that you should be a able to recover quickly from robotic surgery. I had the robot in 2015 when I was 52 and was back at work 2 weeks later playing tennis after 6 weeks. I am sure that 'de-bulking' your cancer will be a real benefit for you best wishes for a speedy recovery and improved health.
had my prostate removed, Feb 6th. week later, bag was taken off me. started Lupron that day. been doing radiation now, 39 times,,13 more to go. then they want to start Ztiga.
having problems still with the bathroom stuff. But guess its normal. Aug 6th , last day of radiation. Its not been the greatest thing i ever did, sure not starting a summer league. but stay strong. and good luck Kevin
I had my robotic prostate removal done 6 1/2 years ago. The catheter came out a couple of weeks later. Starting then, it was kegel, kegel, kegel. Do those exercises religiously. It worked very well for me. After a month of them, saw my doctor who wanted to know how many pads I was using a day. I was happy to say "none". He was very surprised.
Kegel exercise is definitely helpful. I still do them even after seven years from the surgery. I do wear a thin pad for "just in case." I have a ranch so heavy lifting can present a surprise if I forget to "pucker" before l make the move. I will be 80 this month and friends much younger than I have greater incontinence issues than I. This is manageable. Good cheer and enjoy each day.
I had a RPD and two hernias repaired at the same time. No pain just discomfort. The big deal was the foley and as the nurse commented "no one ever cancels the appointment to remove it". Do your Kegel exercises and hopefully in time your incontinence will end.
As far as MR. WILLIAM is concerned you'll have to get used to calling him little willy jr.
I wish you the best of luck with your recover. I am curious about why you decided to have your prostate removed when your PSA is below the normal level of 4? Was this recommended by your Oncologist?
Yes, my oncologist recommended it. The hope is the ‘de-bulk’ the cancer to extend the time to recurrence.
My PSA at diagnosis was 227. With ADT, dropped to undetectable for a year. Then slowly rose to 1.8. Went back to undetectable within a month of starting Zytiga in December of 2017. Still undetectable today.
James, I just wanted to say hi and will you a speedy recovery. Drink some matcha green tea powder (culinary grade) daily to keep positive mood. How are you making out this week?
Thanks for asking. Doing better each day! Hope to start doing work calls next weekand easing myself back into work full time. Incontinence has not been much of an issue at all - which is a great relief. 😊
I really appreciate you asking. It’s been about 7-weeks since my prostatectomy. All good. Walking 3 miles per day. Back to work full time. Minimal incontinence issues. And my pathology report indicated no sign of cancer outside the prostate (negative margins). Really grateful for my excellent surgeon at MD Anderson (Dr. Louis Pisters). I highly recommended him! And PSA is still undetectable. With luck, if my PSA stays down, I’m hoping for an ADT holiday next year. After 3 1/2 years, can’t come soon enough!
As part of my participation with the SIMCAP trial at CINJ, I had my robotic prostatectomy on Nov 14 after having been on ADT for the past 4 months. Continuing on ADT ( Zytiga, Prednisone, Eligard, Xgeva ) post surgery.
Catheter removed on Nov 21, one day before Thanksgiving. Getting used to dealing with incontinence. Not too bad. Getting better every day, slowly but surely. Had some leaking from one of the incision sites for several days, which surgeon said is normal. Can't exercise, except walking, or lift anything heavier than a gallon of milk for 4 weeks post surgery.
Pathology report showed 2 out of 27 removed lymph nodes involved. Removed seminal vesicle also had invasion. Prostate weighed 62 grams. Clear margins. Pathologic stage classification pT3b and pN1. Gleason pattern can not be assessed due to treatment effect.
5 days after surgery PSA went from 0.13 to 0.15; was told this is not at all unusual. Having updated PSA test today, 2 weeks after surgery, and meeting with MO next Tuesday.
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