I recently went through robotic assisted Prostatectomy surgery after being diagnosed with Stage B Prostate cancer, gleason score of 8. 7 of my cores displayed gleason scores between 6 and 8. Doctor stated it appeared contained, but was a fairly agressive type of cancer, and explained the 4 different types of treatment available and sent me home with a lot of information.
After reading many of the posts in this forum, and doing as much research as possible, I opted for the surgery instead of radiation treatment as I want to be completely cancer free. I am 64 years old, in very good health, and did not experience any prior symptoms at all. Happended to cut my finger needing stitches, and during the visit to remove them my primary physician mentioned my last PSA level was 4.5 so conducted another digital exam and blood test. PSA came back 6.8 and during the exam he noticed a small ridge. I made an appoitment with my urologist.
Post surgery now 11 days and finally removed my cathetor last night (per doctors permission). I have been doing Kegel excerises faithfully even before the surgery in preparation for recovering bladder control. I know each person is different, but what can I expect as a general time line before I can switch to a pad instead of the depends. How many of you have regained full control of your continence?
Also, post surgery lab results came back stating negative for malignancy in any of the lymph nodes, supravisicular excision, or seminal visicle. It does state there is one margin that is focally involved, but my doctor stated that of 100 patients with this result, only 4 had an occurance of cancer returning.
Walking a mile everyday, and now that the cathetor is out, feeling much better. I know it will be a process in this recovery, but I wanted to get that cancer out of my body. This forum is not only very informative, but also very supportive. Thank you men for sharing your experiences with all of us.
G'day DoubleDee...sounds like you may have had a very successful outcome...magnificent...
Four years tomorrow since I had my RP and unfortunately still need pads to help along the way...the incontinence seems to fluctuate but any thought of activity definitely requires carrying backups...
Good Luck with it all...
Doubledee,
i also had my RARP recently. Surgery was performed on November 2nd and catheter was removed on November 10th. Ever since catheter removal I am leaking urine. It it 5+ weeks and I do not see much improvement if at all. I am wearing pull ups and heavy absorbency pads of Depnds brand. Standing, walking, sudden moves, bending to to tie my shoes, sneezing, laughing, coughing are aggravating my incontinece.
I started just a few days ago to weigh my pads and pull ups to see how much I am leaking. For now I am leaking daily between 185 to 203 ml/ gr.
It seems to me that is ind of a lot of leakage. I do not see myself becoming dry soon. I am not dry at night also. Many reported being dry soon after catheter was removed but not me.
I am disappointed and getting discouraged. Doing Kegels as instructed without much improvement. I am 51 and was very active whole my life. Incontinece is limiting my activity and impacting quality of life.
I totaly regretted having RP. So far, I still don't feel my penis is there at all.
And who knows how long this SE will be impacting my quality of life.
Feeling robed of something very important to me.
I hope you will be reporting something better pretty soon.
Good luck with your recovery.
MK
Hey Kombi, Have you ever considered having the artificial sphincter fitted, or if the incontinence is not too bad, the male sling. If your system not settled down after a few years, maybe time to fix the last part of the male problem??
You had your surgery a month ago and you're still incontinent.
What did you expect? A return to continence so soon?
My research indicates that few men get continent again in a few weeks, most take months and some up to 1-2 years.
I had RARP 4 months ago and over time moved from thick pads to thinner pads to less pads to one pad. Almost 4 months to the day I wore no pads and still don't. Occasionally I leak a little, hardly noticeable.
Give healing time. Do kegel exercises if you wish. I don't believe in them. I thought the physio I saw was marketing a pseudo medical service at an overly inflated price. I saw a physio2 times pre-op and not once since then.
Whatever you do, don't limit your fluid intake to minimise leakage because you'll be doing your kidneys a disservice.
Speaking of penises, has your General Practioner of PCP suggested ED meds to get your penis to behave as it did pre-op?
I don't understand what you mean by 'stage B'.
Prostate Cancer is generally measured via a Gleason Score ( eg 6-10) and a Tumor Stage ( eg T1a, T1b, T1c, T2a, T2b, T2c, T3a, T3b or T4).
When you say "B" please note there is worild of difference between T1b and T3b.
Your post indicates that post-op pathology show positive margins, is that right?
And clear lymph nodes, no extraprostatic extension and no involvement of the seminal vesicles.
Was metastastis to the bones rules out as well?
Please understand that surgery is used to control the cancer. Even if margins are negative, there is no guaranty that the cancer will not return.
I too had RARP recently and my continence is much much better 4 months after surgery. Please don't expect any quick fire return to normal.
Glad to hear you are feeling better Double Dee,i do not know if you chose the right path to go down?
I was given a decapeptyl jab,the side effects of this have been horrendous,anyone else had this?Then i am to have radiotherapy and 2 more years on the drug.They say this will cure me,but the thought of 2 years on decapeptyl is daunting,anyone going down this route get well informed of what is facing you.
Hi Garry,
Yes mate, You would need a VERY good reason to use it. My sister asked me to do some research into decapeptyl...Bloody terrible stuff. Many forums have terrible stories about decapeptyl. It seems once you have it in your system, you may never recover all your hormone systems as you knew them. It takes several weeks for the drug to really kick in as you lose the various hormones, and no going back. As my 55 year old sister had a terrible time with chemo(heart attacks, all her teeth fell out, damaged heart valve as well as electrical issues, toe nails may never come back, permanent pins and needles in her feet and hands...all in all she would not live through decapeptyl. They just found more cancer in her other breast. She said no more, let it take its course.
Barney,
I am not on any ED meds now and I never used them before RP because I never had problems with me erections.
I am seeing my urologist next week for my first 6 weeks PSA test and I hope he will suggest something. I as mentioned it before my urologist and his practice does not have any ED protocol as I was told before surgery when asked him about it.
My whole genital area is still numb and I do not have any feelings in my penis when I or my wife touch it.
i am wondering if it is to early to start penile rehab when I still have problem with incontinece? Hope someone might share his experience.
Now is to late. I made mistake and have to deal with consequences.
Once again, in my opinion, RP was not worth of problems caused going thru surgery. I totaly REGRETTED doing it.
I made biggest mistake of my life.
Hi geoff.
,thanks for your reply,yes thehorror stories are indeed true,i am finding out to my cost.I was not told whar the jab was nor what it would do to me?
I am left wondering about any further jabs of this potion or if possible to just go with the radiotherapy?I know the docs will not be pleased but to have to feel like this is impossible to bear but i shall be asking questions, Ihave read that you may never get back to how you were that is very frightening.
Yes i have read about other peoples experience on this stuff and it makes awful reading women as well as men, women use it for endo.
Thanks geoff Garry.
After reading your experience and others similar, l've cancel my appointment with my surgeon for robotic prostatectomy and decided to treat my protate cancer gleason 3+4=7 by travelling to Germany for teansurethral hyperthermia. Thank you for sharing and trust you will get a recovery in the not to distant future
geoff90305...no I've not consider any further fixing...I think they have already 'fixed' too much as it is...after 4 years of being fixed I'm happy just to carry on as is...
The Stage B was what the urologist initially told me. Looking at my final pathology report, tumor was listed as T3a and Gleason score was 3 + 4= 7
Doctor ordered a bone scan prior to surgery along with a CT scan and all came back clear.
Proportion of prostate involved by tumor = 20%
Under Addiitonal Pathologic Findings: High-Grade prostatic intraepithelial neoplasia
While I have made my decision, so any discussion about other treatments are not on the table for me at this time, it is encouraging to hear that after 4 months to a year, many men have limited leakage and have found urinary control for the most part.
Thanks for the hope that in several months I can get to a light pad with little leakage if any. Very promising. Curious as to why you say the Kegel excersises are not worth doing.
Thanks for sharing...backups are definitely in the plan.
Ok I now better understand.
With T3a is likely that you may need additional (also called adjuvant) therapy in case it is believed the cancer has spread.
If I were you I would monitor the PSA post op. If it is nowhere near zero and climbs then I would strongly consider such surgery, even if the new scans come back clear.
Please understand that a scan does not pick up every cancer on the skeleton, but only cancer that has spread in a big way. A small spread to the bone will not appear on the scans.
I hear you regret the surgery.
May I ask how old are you and what did the biopsy indicate that led the urologist to suggest surgery?
regarding ED, I suggest you find a PCP or a GP that focuses on men's health issues. By this I don't mean the urologist. A PCP or GP will address your situation and should prescribe Cialis or similar.
As to the numbness you mention, do you have any pain in or near the bladder when you are mobile or when you are at rest?
Before agreeing to travel for the German treatment, have you researched the long term results of such treatment.
You mention that surgery has associate problems. Please don't underestimate the problems with radiation and hormone therapy.
I am 51. Had TURP on June 1st and was incidentally diagnosed with Gleason 6. TRUS biopsy done on August 11th, standard 12 cores taken. 1 of 12 came positive but with higher Gleason score 7 (4+3) 8%.
Nuclear medicine bone scan negative. Had very low PSA: 0.7
Consulted 2 urologist surgeons and RO and all 3 suggested surgery as best option for me. My wife who is an RN and works at different urology clinic asked her docs and all suggested surgery also.
I personally wanted to go RT route.
I am in very good health and very active.
I still have some lingering pain in my right side of abdomen, right testicle and between penis and right groin. Post surgery time I was walking almost every day at least 2 miles with my dog. My social life is almost non existent now, work from home and not going anywhere except to the neighborhood park with my dog.
While wearing pull ups and pads I do not feel confident to go out of my house. Very depressing time for me in this holiday season.
MK