Newly diagnosed, surgery next month - Prostate Cancer N...

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Newly diagnosed, surgery next month

grampie
grampie
35 Replies

Stage1, facing Robotic Rad Prostatomy mid-June 4 lesions (Gleason: 7,3+4)would like to compare notes with someone who has already had the surgery as far as recovery, any surprises, time to complete recovery (if ever) and anything else that may be applicable... ended up getting that damn infection within 2 days, should have gone to the emergency room instead of home but thought it was just a bug. just about went into Sepsis before it was caught , received 3 rounds of antibiotics ( a 7 day, retested positive, then 10 days and still tested positive finally got rid of the ecoli infection after 30 more days of antibiotics) it seems the infection had taken up residency in my perforated prostate) Thanks

UPDATE!!! June 27th 2019

I had the Robotic Assisted Laproscopy Prostatectomy on June 20th (2 weeks prior to that day I asked my PCP for a prescription to manage growing Anxiety - I highly recommend this,these will be discontinued when the "clean" pathology report comes thru) now on day 7 of recovery, .. And the most amazing part of the whole journey so far has been the total lack of pain associated with the actual Prostatectomy. The pain associated with the 6 little 3/4" incisions that are used to introduce the robotic pieces thru the abdominal wall can be Overwhelming, esp. when getting up, walking etc. Yes, I'm still with Cath, but it is coming out next Monday...

Suggestions:

1. Specify that the damn Cath tube be SECURELY attached to your leg and not with masking tape! can be painful & dangerous (Statlock cath stabilization Device makes a good one)

2. If having General Anesthesia make sure you know that you can be puking your guts out while coming off of GA

3. ask for a AirLife to help your Pulmonary Function right after you wake up in Recovery

4. Get up and walk as soon and as often as possible - Your abdomen is blown up like a balloon prior to surgery to assist the surgeon. They don't do ANYTHING to get the gas out after surgery is done... The cramps & spasms coupled with the JOLTING PAIN from the incisions is terrible.

5. Before surgery buy a good stool softener, you will need them when you get home

any Questions? ASK AWAY!

35 Replies
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Tall_Allen

Here's a list of potential adverse effects of surgery:

prostatecancerinfolink.net/...

2 likes
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grampie
grampie
in reply to Tall_Allen

Thank You

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Jager2014

Good luck with everything !!

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grampie
grampie
in reply to Jager2014

thanks

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BobJensen

Good luck. Be patient.

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grampie
grampie
in reply to BobJensen

Thanks...

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BobJensen
BobJensen
in reply to grampie

You are welcome. Please keep us posted.

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AlanMeyer
AlanMeyerModerator

I suggest having a look at yananow.org/query_stories.php . The website of "You Are Not Alone Now" ("yananow") has more than 700 stories written by men about their treatment, including many about surgery.

Best of luck.

Alan

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grampie
grampie
in reply to AlanMeyer

Thanks, will definitely check that out!

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JLINSCHEID

I had a robotic radical prostatectomy in July 2014. My Gleason score was 7 but I can’t remember if it was 3+4 or 4+3. Radiation therapies were not recommended due to a history of Crohn’s disease and a suppressed immune system from a liver transplant. I recovered well from the surgery. Six months late, my PSA began to rise and I was referred to an oncologist. Because my PSA was rising very slowly, she decided to just keep a close eye on things. In the mean time, my sexual life was quite good, although I continued to have some minor issues with incontinence. After a year, my PSA began a more rapid rise and I began Lipton treatments which knocked the PSA way down again. The Lipton pretty much put my sex life on hold. My oncologist took me off the Lipton for a year, but now my PSA has begun to rise again; so back on again. I still experience some stress incontinence and wear light shields for that. I find, however, that the more active I am, and the more exercise I get the less problem I have overall with incontinence. Although the Lipton treatment side effects seem to slow me down occasionally, overall the cancer, surgery, and treatment have not. In the nearly five years since my surgery, I have helped my partner move a brother into assisted living andclean out and sell his house, dealt with the deaths of my mother-in-law and mother, and sold our house and moved to another state with my partner. The only thing I might have preferred would have been to have been in a position to have follow-up radiation which my doctor said he would have recommended in my case except for my other medical conditions.

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rocket09

I had my surgery last Sept. It was quick and not too traumatic . I was out the next day. I was incontinent and started to get better continence after 2 months . I got what I thought was the flu but after much suffering found out it was an abscess in the stomach and I was riddled with infection. Had to stay in the hospital for 5 days and on Cipro for over a month. I became incontinent during the episode but am now down to one pad a day and feeling great. When I have to much coffee or beer I am leaking quite a bit. I had the RRP because I had enlarged prostate 80mm. Had trouble peeing. I pee like a kid now. I have to use the needle to get an erection but it works and its good . Not as spontaneous as before but oh well. Hoping it all turns out in the end as so far my PSA is 0. Not happy about the total situation but I made the right choice for me and am enjoying my life. My wife has been amazing and I love her even more. I do take some supplements and eat less meat but I am not doing anything I think is radical. I hope you get through yours well. Just keep a good attitude. It will be what you make it. Take care,

Rocket

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grampie
grampie
in reply to rocket09

Thanks

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tkalaf

I had my RP last June, 2018. Was Gleason 9, PSA 9.1, scans clear so Dx was non-metastatic. Before surgery, biopsy put me at T2d. Pathology from surgery however corrected this to T3a. This was because cancer was found extra-capsular (on surface of gland).

I stayed 1 night in hospital, then brought home by family. In hospital, it was very painful to move at first, but they work to get you up and moving about. Had catheter and drain tubes to deal with at home. Trained in hospital how to care for and maintain each. Catheter was removed in ~2 weeks, drain tube a bit longer.

Once catheter was removed, had to deal with incontinence and pads. Now ~1 year later, incontinence has lessened. This is different for everyone. It depends on nerve-sparing during surgery. They had to cut ~2/3 of my nerves on the right side due to surface cancer.

I recommend not to let fear get the best of you. Let them take the beast out and then work on recovery. Take a day at a time approach, it gets better as you move on. Take care, and I wish you best of health!!

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grampie
grampie
in reply to tkalaf

Thanks for the great info, certainly makes me fel better about my impending surgery...

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Stoic2

Just a brief but hopefully encouraging answer . ( I am 76 by the way). I had the same surgery 10 years ago. Opted for the nerve sparing version by the way). Same Gleason score as you. Followed by radiation treatment several months later. Here i am 10 years of great life later (including sex life). I don't recall recovery from surgery to be anything special, just the usual (about the same as my knee replacement several years later). Nor did the radiation clean up amount to anything more than a little discomfort and inconvenience with my schedule. Good luck!

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grampie
grampie
in reply to Stoic2

Thanks for the input, I hope for the same success, post operative radiation has not been mentioned so far

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IrishDude

Hey grampie, welcome.

I had my Robotic RP on Feb 26 of this year. At this point I am ~fairly~ continent. I use about a pad a day for sneezes and such. I still wear a diaper to bed at night because I had some early accidents, but that has not happened for quite some time. Once they are all used I won't be buying any new ones. Now once I start drinking, or even worse standing an drinking, all bets are off. For some reason things really start to flow in that circumstance.

Performance wise I am on the low dose Viagra. I get occasional random 50% erections, but never when I am trying. I have come to the conclusion that erections are like fairy's, once you start looking for them they disappear.

I do use the Trimix injections and that works pretty well. There initially was some ache to get used to, but I have found that seems to be getting better. All in all I find the injections satisfactory for now, and a lot better than nothing.

So in my case I would say that it hasn't been as horrible as I feared. I have been inconvenience and humbled, however I am not constantly pissing my pants, I do have sex occasionally, and I have significantly improved prospects of being around for several more years.

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407ca

Grampie

Sounds like you were just diagnosed and decided on surgery without too much research. At least that is the impression I get.

I hate to see men decide on ANY form of treatment without second opinions and fully exploring other options. Depending on grading and other things it might be more advantagious to have other therapy. Most often men feel that if you cut it out then it is done and gone. If you research you will find this is very often NOT the case.

This is a very slow growth cancer. You are intermediate, not high risk. You owe it to yourself to learn for a month or two and only when you fully understand the consequences of your decision, to decide.

I am guessing you were diagnosed by your urologist, a surgeon. They recommend surgery as that is what they know. Radiologists can tell you about radiation. You really should at a minimum, learn about both. Your future depends on it as there is no going back.

Good luck and all the best.

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grampie
grampie
in reply to 407ca

Thanks for the reply, I really appreciate it. No, I didn't rush into my decision, but rather did extensive research on all possible courses of treatment. My initial decision was Brachy (radiation seeds) I wanted no part of ebeam or robotic surgery. However, as my research on multiple websites: NIH, Mayo, WebMD, Dubin, and many others progressed I went to the middle of the road with NO decision made. Last month I scheduled two meetings: the first was with the surgeon (who had also performed the Biopsy) and who will be doing the Robotic Surgery, and the second was with the head of the Oncology/Radiation therapy. Each meeting lasted 2 hours+ at no time did either doctor push their Departmental Agenda, but rather spent the time going through the entire progress. Having done my research I had a multitude of questions for each. Over the course of April I met with approx. a dozen PC survivors, 5 had gone with the Surgery and had absolutely no qualms about recommending it to others, of course each had their little concerns (however, each and every concern had been addressed before the surgery took place. The other seven PC survivors had either ebeam or Brachy, the Brachy individuals were overall positive except for one whose Prostate Cancer had returned. Of the EBeam patients, one was absolutely adamant that he should have had surgery, he has gone through hell for the past TEN long YEARS. This case made me think long and hard about radiation (ebeam & Brachy), How could prostate Cancer come back if the Prostate was killed by the radiation. ERGO: I did more research, and more and finally found the information that the prostate is NOT killed during radiation. it lives on, although in a much altered state: gnarly, shriveled, but viable. This was the basis for my decision, it was not lightly made, I had tons of information, I spoke with many survivors. Both the Surgeon and the Oncologist have years of experience performing either the Robotic Surgery (200-250+ operations) or EBeam / Brachy. I sincerely hope that all future patients take the time to research and investigate like I have

1 like
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407ca
407ca
in reply to grampie

Grampie

Great that you did research. So many do not and that is something that I try to bring up as I feel it so important. I am pleased that my impression that you had not research was incorrect. I have nothing against surgery as for some it is the right choice and that is something we all have to decide. I hope it all works out better than your highest hopes. Take care and only the best of luck to you.

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grampie
grampie
in reply to 407ca

Thank You, I hadn't planned on going into such detail, but when i got going I just felt like recounting the entire process in the hope that someone in the same predicament would take it to heart and actually do his research...

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407ca
407ca
in reply to grampie

No, going into detail helps. Good on you for doing so. I find it refreshing to encounter those who research and learn. It is my hope that everyone does this no matter what choices they make. Choices based on knowledge are all important. I really wish you all the best and am encouraged that men look into things more.

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Jeff85705

I had RARP February 2017. A biopsy showed Gleason 3+4, PSA 10. My urologist recommended surgery (of course), but referred me to a clinical oncologist and a radiation oncologist for their opinion(s). After seeing them and researching, I chose nerve-sparing RARP. Surgery was uneventful but long (5 hours) and the immediate result for me (age 68 at the time) was peripheral neuropathy, numbness in the bottoms of my feet (coincidental says everyone). Hospital for 2 sleepless days. Wore the Foley catheter for about 11 days at home. Took cipro, then had a cystogram in advance of Foley removal. Incontinence required only 1 pad a day at most. ED was absolutely complete for a year, followed by some response using Viagra (60-100mg). Since then I have had undetectable PSA (<0.10). I am satisfied I made the right decision and have zero regrets. I got rid of the prostate, the surgeon got excellent microscopic visuals of the area around the prostate, and pathology was able to dissect the gland. As a result, my Gleason was now measured more accurately as 4+3. I recommend the surgery despite the incontinence and ED. All treatments affect both, but in different ways, and radiation has its own side effects besides. Just have a surgeon who has done tons of RARPs with good results. I failed to do that research, but I was lucky to already have a successful urologist. Good luck.

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aceace12
aceace12
in reply to Jeff85705

how many cores tested this ??

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Jeff85705
Jeff85705
in reply to aceace12

I think around 19 but I don't remember for sure.

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tajohnston

Hi

I had Robotic assisted laparoscopic prostatectomy on Jan 14 2019. I just had my third PSA blood work and the PSA came back as undetectable. I have everything functioning normally and have not needed pads or Depends since early February. I am very impressed by the outcome because prior to the operation I was very nervous. If you need to have this done I believe this is one of the best ways.

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grampie
grampie
in reply to tajohnston

Fantastic!!! I really do hope that my surgery goes as well as yours, thanks for the info! How about any ED?

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tajohnston
tajohnston
in reply to grampie

Everything is normal no ED issues. the main issue with sex is the orgasm is different. Ok but not as intense.

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grampie
grampie
in reply to tajohnston

Any need for Viagra?

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tajohnston
tajohnston
in reply to grampie

no Viagra everything natural, normal I is see my wife and get hard

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tajohnston

I kept notes from start to finish if I can find it on my laptop I will forward it to you

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grampie
grampie
in reply to tajohnston

thanks, much appreciated!

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tajohnston
tajohnston
in reply to grampie

Do you have an email I can send to

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tajohnston

One thing I suggest is that before your surgery you work at training your pelvic floor muscles. It make recovery much easier(incontinence issues). My daughter had a friend of hers recommend a physiotherapist that specializes in pelvic floor issues. She really helped me learn the easy way to train your pelvic floor muscles. I believe that when you have the incontinence issue under control other things like ED are not on your mind and things just happen normally.

Also since April 1st I have been sleeping naked from 11 pm to 7 am and no leaks or need to get up in the night.

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aceace12

how many cores showed gleason 7 and what percentage of biopsy showed cancer ?

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