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Post by Rick Redner on Feb 6, 2014 0:50:16 GMT -5
Richm I can relate to feeling really depressed not only about ED but all the changes involved in living without a prostate. Just went for a 3 year post surgery consult about ongoing ED issues. Getting a better response than ever before but still inconsistent. My healing continues which means this is a healing journey that takes years. Do you have the support for your long journey?
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mikem
New Member
Posts: 1
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Post by mikem on Feb 7, 2014 17:07:38 GMT -5
Hi Rick. I found your forum from FB. I was diagnosed after biopsy done 12/13/13 PSA 7.76 Gleason 7 (4+3) all cancer found in left lobe, none in core samples from right side. T2b i considered the options and decided on robotic surgery, which took place 1/28/14.. I left my prostate at Stanford. Today had f/u meeting with surgeon who reviewed the path report with me.. Initial biopsy showed cancer only in right lobe so I was T2b. Final cancer in both lobes with extracapsule extension, "extensively at the right specimen margin"."sections of the specimen showed bilateral Gleason 4+3 = 7 prostatic adenocarcinoma which is present extensively along the black inked (right) cauterized margin. Seminal vesicles are not directly involved, though on the right side, there is carcinoma in the extra prostatic / extra seminal vesicles fat, which. Is also present at the cauterized specimen edge. Lymphoma secular invasion is identified." Two neg lymph nodes were removed. New staging is pT3a(R1)pN0 ( whatever all that means. My surgeon told me I will need radiation treatment no matter my PSA score in 3 months.
i am so glad to be free of the catheter but have filled up two depends in the past 3 hours. If I sit cross legged and pinch myself on the way to the bathroom, and kegel as I remove my pants, I can actually get maybe 75 cc out. My only worry for today is "will I wet the bed tonight?."
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Post by Rick Redner on Feb 8, 2014 10:46:04 GMT -5
Glad you found us through Facebook. I believe one of the advantages of surgery vs radiation, is the Doctors now know exactly where they need to perform radiation. I'm sure it's been disappointing and perhaps frightening to learn cancer has spread beyond the prostate. You probably will receive both radiation and hormone treatment. I've known many men who have great results with undetectable levels of PSA for years following their treatment of cancer outside of their prostate.
Sounds like you are dealing with an pleasant level of urinary incontinence. I hated my life when I was going through 15 depends per/day. Here's the good news, within 4 months post surgery I was down from 15 diapers a day to a pad per/day.
So you may see a dramatic improvement soon. The first step is staying dry and night. It appears you haven't reached that yet. When I was leaking through my diapers at night, I put a tenna pad the front of the diaper. In the middle of the night I'd remove the pad and diaper could handle the rest of the night. I called my creation a "super diaper" That could help you at night as well. Rick
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michael
New Member
married with children
Posts: 35
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Post by michael on Feb 9, 2014 15:17:40 GMT -5
Glad you found us through Facebook. I believe one of the advantages of surgery vs radiation, is the Doctors now know exactly where they need to perform radiation. I'm sure it's been disappointing and perhaps frightening to learn cancer has spread beyond the prostate. You probably will receive both radiation and hormone treatment. I've known many men who have great results with undetectable levels of PSA for years following their treatment of cancer outside of their prostate. Sounds like you are dealing with an unpleasant level of urinary incontinence. I hated my life when I was going through 15 depends per/day. Here's the good news, within 4 months post surgery I was down from 15 diapers a day to a pad per/day. So you may see a dramatic improvement soon. The first step is staying dry and night. It appears you haven't reached that yet. When I was leaking through my diapers at night, I put a tenna pad the front of the diaper. In the middle of the night I'd remove the pad and diaper could handle the rest of the night. I called my creation a "super diaper" That could help you at night as well. Rick I wore 1 depends after my robotic surgery, yes I have leaked here and there but never had to wear a pad or diaper, I do not know what the difference is between good and worse results?
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Post by richardpaul on Feb 24, 2014 15:50:25 GMT -5
Hi I'm Richard prostate left in Chatham Kent England 55 married 2 children 8 and 18 company director previously fit and healthy take regular exercise includes;spinning, cycling, swimming, walking, jogging..... an active dad! PSA tested Jan 12 was 8.4 re-tested Feb at 9.2 midly enlarged prostate noted TRUS biopsy March 12 benign PSA re-tested Sept 12 13.5 a rise, tested 2 more times 12.8 and then 13 and had an MRI Nov 12 2 suspicious areas showing bilateral but organ confined carcinoma MRI pre-biopsy T2c NO MX followed by template biopsies April 13 Gleason 3+4 with 8mm tumor in 7/29 cores both sides of the gland. After considering in some detail all the options offered to me and some that were not I elected to have LRP. An unexpected benefit of my diagnosis was a critical illness pay out to my company who had insured many years before! Had procedure 18/9/2013 after a lovely active family holiday. So Laparoscopic radical prostatectomy on 18th Sept 2013 under Maidstone and Tunbridge Wells NHS but procedure carried out at Medway Maritime. They found a reasonable volume of prostate cancer, but as the MRI scan showed there was no evidence of extra-prostatic spread. I was very pleased that my surgeon was very happy with how the procedure went and he was able to carry out a bilateral nerve sparing procedure as the scans and biopsies suggested the tumour was not in the vicinity of the Neuro-vascular bundles.
I was discharged the following day and can only compliment the excellent care and treatment provided during my short stay at Medway. My wife and children visited me on the day after my op which was very uplifting for me.
I was given medication for pain relief, constipation and ED to take away. I was started immediately on Cialis 5mg daily. My catheter was removed 1 week post-surgery at Maidstone Hospital this was a fantastic relief as although I was getting accustomed to it I really want rid ASAP and was ready for the next stage.
Post op Histology – pT2c NX Mx Gleason 7 Surgical margin positive (circumferential only) this occurred where the surgeon nicked the capsule wall as part of nerve sparing procedure. I have been given stats of 95% of PC not returning for 10 years, I will take those odds.
Been dry since Christmas Eve 13 no more pads!!! ED is an issue but being patient!!
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Post by Rick Redner on Feb 25, 2014 10:44:57 GMT -5
Richard, Welcome to the forum. Glad to hear surgery went well, and you have a 95% chance of being cancer free in 10 years. Regaining urinary control and moving to a pad free life is a welcome relief.
ED takes much longer to resolve, even with double nerve sparing surgery. I hope you are doing more than waiting patiently. Are you involved with penile rehab so that you don't develop a venous leak during this healing period? Rick
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Post by Charlie on May 19, 2014 12:09:56 GMT -5
Thank you for creating this forum. I am 54 and was diagnosed and confirmed via biopsy in February this year and am scheduled for surgery in June. My PSA was 10.5 and Gleason score of 3 + 4 all on the right side. The doctor said he is going to remove the nerves on the right side and spare the left side. I will be having the traditional surgery as there is no one competent on the Di Vinci where I live.The info posted on the post op has been helpful and I will be ordering your book shortly. I am concerned with the post op complications and recovery time. I can not afford to take more than 2 weeks off work and the lifting restrictions are going to be a problem. Any thoughts or suggestions?
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Post by Rick Redner on May 22, 2014 22:33:19 GMT -5
Garry, It's been a while and I hope you've recovered urinary control. ED may still be an issue. If you get notice of this reply I hope you'll give an update on how you are doing. Rick
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Post by Rick Redner on May 22, 2014 22:44:08 GMT -5
Thank you for creating this forum. I am 54 and was diagnosed and confirmed via biopsy in February this year and am scheduled for surgery in June. My PSA was 10.5 and Gleason score of 3 + 4 all on the right side. The doctor said he is going to remove the nerves on the right side and spare the left side. I will be having the traditional surgery as there is no one competent on the Di Vinci where I live.The info posted on the post op has been helpful and I will be ordering your book shortly. I am concerned with the post op complications and recovery time. I can not afford to take more than 2 weeks off work and the lifting restrictions are going to be a problem. Any thoughts or suggestions? Charlie, I can't emphasize enough. If you lift more than your Doctor tells you that you can before you are given medical clearance, you can disconnect fragile connects made and end up losing urinary control and wearing diapers for the rest of you life. DO NOT RISK ANYTHING HEAVY AFTER SURGERY-THE PERMANENT DAMAGE YOU WILL DO TO YOURSELF ISN'T WORTH IT. Two weeks off- You are cutting it very close. At 2 weeks post surgery I was leaking urine through my pants 1-3 times a day. One month out I was still needing to change my diaper 15 times a day. While that frequency is unusual you may need to adjust to living in diapers and you'll only have 5-6 days without your catheter. I think two weeks is two soon, but that's just me.
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Post by Dan on Jul 12, 2014 13:38:46 GMT -5
Hi Rick.. glad I found the site;69 yr old and left my Prostate in Dothan Alabama on March 26th, 2014. Had radical Da Vinci prostatectomy Catheter out in a week and the next weekend back at emergency for another catheter due to blood clots. Kept it another 4 days and finally out. Had heavy leaking initially but has subsided now to either one pad a day or one depends a day. Can mostly sleep through the night without having to get up or if I do it's usually once, which is a good thing. My uro didn't or hasn't done any rehab advisory yet. I go back on the 29th of July for a followup and hope to discuss things then. I've taken 100 mg Viagra but it doesn't seem to help, not enough rigidity for intercourse. Somewhat depressed at times but have been able through faith to manage it. Haven't read your book yet but have ordered it and hope it arrives soon. Has been 4 months since surgery and maybe my expectations were too high. I think that's one reason I'm looking forward to the book and actual common sense answers to things I may not ask the Dr or forget to ask. Really glad I found this site. Dan
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Post by Rick Redner on Jul 15, 2014 16:11:49 GMT -5
Dan Welcome! I'm glad you found this site as well. We don't have an active community of people posting at this time. It seems more people visit for informational purposes. I think most men who've had double nerve sparing surgery have unrealistic expectations to some degree. Appreciate you ordering my book and I hope it will help you on your journey of coping with life and love without your prostate. Let me know. Thank you for sharing your journey. Keep the faith. Rick
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Post by Lovelylady on Nov 11, 2014 0:43:34 GMT -5
Hello, I am new here and found you through Facebook. I've posted my story under the Changes in Sexuality Post Surgery and could really use some advice about my relationship which has gone down the tubes in a big way
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Post by Lloyd Martin on Nov 30, 2014 18:01:59 GMT -5
Hello....67 year old retired high school math teacher......Gleason Score was 3+3 going into surgery....had 4 of 17 biopsies test positive with cancer on Aug 26,2014.....PSA of 3.7 on July 31, 2014, so PSA doesn't always tell the story....had never had a PSA above 4.6 in previous years.....had the robotic surgery on Nov 13, 2014 in North Little Rock, AR.....also, surgeon did some repair work on a hernia in the navel area during surgery since one of his probes was going thru that area.....everything went well....catheter was removed on the 19th....have had quite a bit of leakage since....having to use 4-5 depends every day....good news is pathology report following surgery shows no cancer outside of the gland and my Gleason score did not change.....will do a follow-up on Dec 17th along with the first PSA test following surgery.....anxious for that first PSA reading.....certainly will be proud when the leakage begins to show improvement.....patience, I have very little of.
Lloyd
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Post by Rick Redner on Dec 1, 2014 10:26:13 GMT -5
Lloyd, Welcome to the forum. At the present time most who visit here use the site for information, so we don't have an active community of people posting. Glad to hear your post op news was the best news a man can get post surgery, that is the cancer was confined within the prostate. As far as leaking goes, many men see significant improvement by the third month. You mentioned you don't have patience. I suspect this journey of living without a prostate will be challenging you to develop patience. Most men won't have an erection for 18-24 months following surgery. Glad you found us and hope you find the info here helpful. Rick
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gm
New Member
6 months post RP mostly dry 97% & manhood is at 10 to 20% satisfaction level at of march 2015
Posts: 2
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Post by gm on Jan 6, 2015 10:35:10 GMT -5
Rick & Fellow PC survivors, Diagnosed in Jun of 2014 had DaVinci Surgery at Cancer Treatment Centers (CTCA) in Arizona on October 1st. Post surgery pathology was a 65mm prostate with 5% cancer in prostate with a Gleason score of 7. Nothing in lymph nodes. I was 99% dry ( pad free) in about 5 weeks post surgery. But still need to keep up pelvic exercises. so far so good. I have a very supportive wife of close to 35 years and we have had a good intimate sexual relationship prior to PC surgery.
What's not quite right....
#1 weight gain. + 10 to 15 pounds post surgery Holidays did not help here. Just got back on no carb no sugar diet. Vegetables & lean meats. Worked before,.. Will see how that goes. Need to get back to 200 currently at 225. #2 Diminishing sex drive as time goes on. on a rating of 1 to 10, 2 to 3 This I think is due to a expectation of erection = manhood. #3 Was on Viagra for 10 years before PC. My doc put me back on to try to get '' back on the horse'' Does not seem to have a effect. #4 Doc set me up with a pump. this works ok at best and in my case painful. Not exactly a big plus adder to a romantic interlude. #5 As of this week hoping starting diet, some exercise may help with ED & depression that seems to goes with it.
I have read Rick's book as a suggestion by a case worker from CTCA. As scary as some parts are it was a big help
I am here to learn more and be a resource for my fellow PC'ers
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