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Chitown...for pending surgery

bdhilton
Posts: 752
Joined: Jan 2010

I saw that you ask about expectation on another post on how to prepare for pre and post surgery...

I would recommend you review the information on William Catalona's site (Dr. Catalona developed the PSA test as a screening test for prostate cancer plus is one of leading surgeon in the world for prostate cancer and “perfectd: nerve sparing surgery-he was mine and a great guy in general) http://www.drcatalona.com/

I am sure many have lots to say but in addition to what Catalona recommends I would suggest the following:

Pre surgery:
1. exercise, exercise, exercise E
2. Evaluate you diet and make necessary and lifetime changes
3. Spiritual guidance

Post surgery:
1. walk, walk, walk
2. Evaluate you diet and make necessary and lifetime changes

Best to all

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

Thanks for the link---very informative articles

Dan

chitown
Posts: 90
Joined: Mar 2010

I am set for surgery on 6/15 and had upped my exercise plan and diet plan. Dr Catalona site is very helpful.Any other details regarding pain and side effect management, however small, will be helpful.Also, does minor pain remain for a period of time or it goes away quickly

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

In the case of my Robotic Surgery...I had reminder pain for about 40 days or so...but then at 60 days I went snow sking for about 6 hours and did not feel one second of any pain from my sugery, nothing, zipo...I had one wipeout and still did not feel anything. Again that was Robotic surgery...I think my surgeons were pretty darn good at minimizing the invasiveness as I rarely even had any blood in my urine from the day of the surgery on....many on here have talked about going red after they did too much and that never ever happened....only a pink tinge in the last few drops at the end of urination following a BM is the most blood I ever experienced from the surgery - even on days immediately following the surgery that I over did it...everyone has some days like that especially if your an "A" type personality that cannot sit around. The worst pain I felt for my whole surgery was when brushing my teeth and I stuck the brush too far down my throat brushing the tongue and I gagged - that woke me up with pain in every part of the surgery...needless to say I did not brush the tongue following that episode during the first week following the surgery.

Good luck with your surgery!

chitown
Posts: 90
Joined: Mar 2010

Randy

Will brush my teeth carefully :-)

Am just preparing my mind for surgery.
Had sepsis of blood after biopsy sending me to ICU for a week and then 3 weeks of painful recovery. So now the surgery fears are amplified.Also, one side of my scrotum is still painful and not recovering.

Any details from anyone to help me visualize the sight, sounds, feeling on the first 2 weeks of recovery and then next 2-4 of normalized life is what I need.

Pain, nausea, urination, BM, gas pain, food, scrotum swelling, sleeping, weakness and advise on what works and what does'nt. Also suggestions for my wife and family to manage and cope. I have a great surgeon who I trust but worried after that.

Have read many website of doctors on their suggestions, but people who have gone through it are best source. Have been reading a lot on ED and incontinence. The surgeon suggests viagra/cialis with a pump and is on the sideline of injection.

I am very much Type A and want to do all things faster and better than average but luck, or lack of it always comes in way!Luck aside I am trying to empower myself and my family as best as possible. I strongly believe in the power of collective thinking

Thanks to all again and again.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Buy a tube of neosporin Tripple antiobotic or generic brand however make certain you get the one that HAS pain relief benzocain or whatever the pain relief chemical is....use it freely and at every time you go to the bathroom for a BM and lube the head and first inch of cath tube...this will make the tube slide easy and painfree plus avoid any infection. Another tip is buy some disposable wipes for BM's it's just easier, also get some 100mg stool softners and start taking them the first day home...I took two per day one in the morning and one at night. I'll think of more as time goes and add to thread.

Randy

bdhilton
Posts: 752
Joined: Jan 2010

I already gave you my 2 cents and info and most of your questions and if you want to review Dr. Catalona web site again it gives you a very good expectation guide for post surgery.

As far as ED therapy both my surgeon and Urologist recommended that I use penile injections (bi or tri mix) and 5 mg Cialis daily...Both my surgeon (Dr. Catalona) and my Urologist said that the injections would bring Willie back to life faster than anything else if he could be brought back to life...After I figured out the "right" dosage on the bi-mix I had 100% pre surgery erections...I experimented with the doses (as told by my Urologist)

...So while you are waiting for the Cialis etc to work or nature to take her course you can have a woody, sex and an orgasm.... However this is what my Urologist and Surgeon recommended and based on my results 9 weeks today and reading the many post here on the subject I am a believer...best to you but again walk walk walk and you will recover faster

bdhilton
Posts: 752
Joined: Jan 2010

Also…I am a big believer in the power of prayer and positive thinking…

chitown
Posts: 90
Joined: Mar 2010

How about if there was a lists of do and dont - pre and post surgery!!
keep it coming and I will compile after my surgery on 6/11.

How about the emotional aspect and how it affects our family and advise to them

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

The single biggest thing that I think helped me avoid a lot of the after surgery issues is going on the post surgery diet BEFORE THE SURGERY.

This eliminated all of the gas, bm and other issues for me. I know of a couple of other guys who did the same thing with the same results. If your doc did not yet give you an after surgery diet and nutrition guide, ask them for one. If they don't have one let me know and I'll send you mine. My surgeon was Dr. Menon at Henry Ford in Detroit and my recovery was very uneventful.

Good luck and most of all, don't get too bogged down on all the prep stuff. Go out to dinners, enjoy the good wines and see the shows. You may not feel like it for a while after the surgery. Also I have been told (and from experience) try to empty the prostate as much as possible. LOL It won't hurt the surgery and it will calm the nerves greatly over the next 10 days.

Know that you will be in the prayers of my wife and I throughout your journey,

Sonny

60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

"The single biggest thing that I think helped me avoid a lot of the after surgery issues is going on the post surgery diet BEFORE THE SURGERY."

Any chance you could post the diet here, or maybe email me a copy (bikeshop@gmail.com).

Thanks, Dan

chitown
Posts: 90
Joined: Mar 2010

Dan -

My surgeon got trained by Mani Menon (WHW surgeon) in Valry 2000 and have done over 2000 surgeries in past 8-9 years. His advise to me 'NO PROCESSED FOOD OF ANY KIND' before surgery. That means no fast food and all chain restaurants. Same thing of home diet too. Even the salt we use in processed. So careful at home too.

Other advise I got is to follow a heart healthy diet. I have removed red meat, eat seafood every day, lots of fresh vegetable and salad. Very small portions of meats in the meal. No more than 4-6 ounces. And exercise every day.

WHW - Please post the diet here so other can benefit too.
And thanks for the words of encouragement.
Keep me and other advise on your experience

142
Posts: 169
Joined: Dec 2009

I was not given a formal general diet for before or after (except the light & later liquid diet in the couple of days leading up to surgery). I did ask at the hospital before I was discharged, and they sent the Dr. who was head of the Nutrition area (and the hospital restaurant / food service) to talk to me.
She was most concerned that I get enough fiber to promote good bowels, but not too much (constipation is absolutely avoided at all costs in the weeks following surgery), and to avoid anything that promotes gas or digestive difficulties. That includes a lot of vegetables I don't eat anyway.
I have been on a lighter stool softener (Docusate Calcium) for years because of colon issues, and continued that (with Dr. approval) through pre & post surgery (excluding only the night before surgery). I believe that it helped me get that first BM in better than average time.

If you want some general thoughts on anything and everything prostate, check the healingwell.com site and look at the top of the Prostate Cancer thread for a post "Prostate Cancer: The Really Useful List made by HW people for HW people".
It is a consolidation of a lot of general comments from members over time.

mtguy
Posts: 23
Joined: Apr 2010

I am interested in what changes I need to make as well.
Surgery not scheduled yet but thinking October.

LNWMT@yahoo.com

Thanks!

griff 1
Posts: 114
Joined: Jun 2010

yes please all send your advise and comments, there are some wonderful people on this and it is great info and knowing we are all together against this beast. thanks griff ps it was hard telling my kids. twins boys that are 12 and my boss who is 10 (daughter)

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I guess I missed this. Are you having robotic or general surgery? If you follow a sensible diet, you'll be OK. Eat some meat, vegetables, all that good stuff. Don't let the nerves get you reaching for comfort foods like pie, ice cream, Cheetos, etc. Depending on your current physical condition, I would at least walk, jog if you can -- anything in the cardiovascular department would be good. You want your heart and lungs operating efficiently. Obviously, you'll have to undergo several tests prior to surgery, and if they think you'd experience a problem, they'll let you know. As for how to involve your wife, family, etc., my decision was to be open with it and tell everybody I knew. This not only avoids "whispers", but you'll be surprised how you will get help, advice, and information from unexpected sources. This is uncomfortable for everybody. Once people find out you have cancer, they don't know what to say. You can help them feel more comfortable around you if you talk about it openly and honestly. I announced mine at a faculty meeting and told everybody if they want to talk to me about it or ask me questions, it's OK. I also handled the situation with humor (or as much as I could). You MUST communicate your feelings, emotions, concerns, etc. with your wife. You don't have cancer -- you both have it now. She's your most important asset. In terms of "normal", there will be a "new normal". The new normal is a little different for all of us, but I think everybody would agree, there will be adjustments.

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

"You don't have cancer -- you both have it now"

Skid Row Tom, thanks for your post - you kind of summed up what has been going on in our household and your quote above helps me better understand my wife's behavior. I really couldn't understand why she was having a much harder time than I was since I got the diagnosis in April (with surgery scheduled June 1st). Whenever I bring up some aspect of my problem ( usually just logistical things like hospital info, appointments etc), about 80% of the time she will tear up and cry. I don't mind it, but it is me comforting her most of time. Something I didn't expect.

Dan

RichH
Posts: 1
Joined: May 2010

Your wife is the one certain to have a long term problem. She'll be the one alive 10 and 20 years from now. You probably will be, too, but if not, you won't know it. She'll be sharing any disabilities you might develop. You make one trip back and forth to the hospital, and she will probably make more.

She is afraid she might miss you. Hug her, and help her make HER plans, not just yours.

RichH

chitown
Posts: 90
Joined: Mar 2010

First of all thanks Tom and Dan for sharing your though best wishes and good luck.
Neither me of my wife have had thus far any meaningful reaction to the word cancer. Its just a health problem to deal with and technology and medicine are there to deal with. Am happy to have find a surgeon who has don over 2000 surgery. I am in good shape and very athletics and have pumped up my physical exercise a lot past few months. My wife has made a detailed spreadsheet for all options of post operative care and have several members of extended family staying with to help us post surgery. I have told my boss only of the surgery only to find out his he dealing with the same with his father and he has enlarged prostate himself. For rest it me time of for some medical procedure and time off

Have many friends and family who are oncologists and other doctors.
Believe me CANCER is a big word that has grown out of proportion.
I have done what i can to get ready and now only have positive thought.
I close my eye every day to visualize every aspect of surgery and recovery, and share those thoughts with my wife..then I am in peace

So far this has worked for me. 2 weeks of work then back on the saddle. 6 more weeks then back to swimming, biking, hiking and rest. No more thoughts than that

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

Chitown,

I had my robotic da Vinci a few days ago and although its been only a few days, the pain and discomfort are at the low end of what I was expecting.

Once I am in the position I want to be in (sitting, standing or laying down) there is virtually no pain. It is moving from one position to another that the soreness is evident. I was given a presciption for a narcotic for pain relief (oxy something, I believe) but haven't needed it--just been taking tylenol.

Walking has been no problem since day 2 but the catheter makes it annoying and slightly uncomfortable. I was given both the big urine bag for the catheter and the small strap on bag for the leg--I find the big bag more convenient and more comfortable and will wear it until the catheter is removed. My problem with the little strap on bag is once it gets full the weight of it causes it start slipping a little bit. Whichever bag you go with, keep the tube clean and lubed as another poster described-it greatly increases comfort.

I view the operation itself as just one of the milestones in the journey and glad it is over. My next milestone is getting the catheter removed early next week.

I am hoping for the best for the remainder of my recovery but know that doesn't always happen and will deal with any setbacks.

Good luck to everybody with upcoming treatments.

Dan

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I didn't even consider using the small cath bag...why bother...and you have to do all the cleaning...I just kept the big bag from surgery for the 13 days I had it....I just got a baggy pair of jeans...wore a pair of swiming trunks and hooked the bag on the pocket of the swiming trunks and away I went to movies, dinner, what ever I wanted to do....I looked at the cath as a totally temporary issue that would be gone in time. I loved my pain meds...tramadol or something like that...I can see how people get addicted to them...It was the best medicine I have ever taken period....I went and refilled to the max to save for the days I work too hard on the projects I always seem to undertake...like the man cave #2...a 20X24 foot building (Randy's workshop)with a screend in porch on top (for my sweetie). I will use the pain medicine as needed....I used to be a total believer of never taking a pain pill, asprin or anything of any kind...after this surgery and the virtual NO PAIN from Hostpital to now I believe in taking the meds.

Randy in Indy

142
Posts: 169
Joined: Dec 2009

Dan,
Welcome to the other side.

My post-op nurses scared me out of changing the bags, although the doctor said just be careful to keep it a very clean process. The nurse reminded me that when I had infection issues and had to come back to the ER, she would have to deal with me - the doc gets to go home or play golf.
So I just continued using the big/night bag - hung it on a bag strap over my shoulder so that it was about knee height when I needed to be moving around. I bought some cheap exercise pants, and cut a hole in the seam on the side the tube went to - just pushed the empty bag through when I changed.

Keep us posted, and ask questions about anything you need.

Ah, one warning - at some point, if it has not yet, your scrotum will swell up bigger than you can possibly imagine - I came apart at the seams and called the ER, because no one had warned me about it. It happens, and it will go away after several days. I could not find willie - the cath tube just vanished into swelling. Really messes with your mental state.

griff 1
Posts: 114
Joined: Jun 2010

dan, it sounds like you did alright. i go the 23rd of this month for robotic surgery so i am glad to hear what you have to say. i had a ruptured appendex in febuary and my dr. is concerned about the up coming surgery with the past appendex surgery he says everything inside is all stuck together and it will be harder. i guess all i can do is be postive. they are going to look at my bladder next week, my father died of bladder cancer, so i guess they want to make sure no surprises when they go in. anyway good luck. griff

steven.sims@cbexchange.com's picture
steven.sims@cbe...
Posts: 2
Joined: Nov 2009

Chitown

Had my radical on June 15 2004 so I am coming up on six years. Its not that bad. I didnt restrict my diet but at the time noone told me to. The tips on lubing the cathether is a good one as this was the most uncomfortable part of the recovery. You do feel tired and a bit weak but things start to improve immediately and fast. Do not worry I am type A as well and dont do well being down. Just let time pass and take a few breaths. It will soon be just a memory and you will go on with your life with new and wonderful perspectives!\\

I am also in the Chicago area and feel free to contact me anytime!

Steven

chitown
Posts: 90
Joined: Mar 2010

Steven - Lived many many year in Chicago..now in Atlanta.
Glad you are active on this board 6 years after surgery.

I am focussed on the next few weeks and months but can also benefit from your longer perspective and advise

chitown
Posts: 90
Joined: Mar 2010

Dan - Very happy to hear good news your surgery and recovery. One big checklist done for back to normal life!My surgery is scheduled 6/15 and hoping for things to go well.
Keep me updated on your recovery and any lessons learned.

Best wishes

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

Thanks for the words of encouragement everybody!

Dan

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Your picture looks like you are in your 30's and way to young to have this beast...Hope you are recovering nicely. Sounds like you did well prior to and now after. Any issues or questions?

Randy in Indy

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

I'm 54 and that picture was taken about 4 months ago. I will take the compliment though.

I had the catheter removed this morning. What a relief! Yes, it was painful to remove, but not as painful as expected and literally just took 2 seconds. Peeing is definitely a bit painful right as I am about to finish up...but not that bad. The pain of peeing is overshadowed by the fact that I pee like I am 18 again instead of the really weak stream I have had the last few years. I am dribbling and leaking a bit too when I get up from a chair or pass gas

I get the post op biopsy results this evening from the doctor.

Dan

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Hang in there Dan. Keep pushing the fluids and walking. Keep up the kegels.
Let us know the biopsy results!

Larry (age 55)

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I never had any pain even when the cath was removed...more of a creepy feeling than anything else...just like when they pulled out the surgery drain hose....creepy..but over in an instant. I only had a slight pain at the end of urination last three drops following a bm in the early first week or two.

Waiting to hear your results.

Randy

BRONX52
Posts: 156
Joined: Apr 2010

GOOD LUCK AND HAVE A SPEEDY RECOVERY. THE LEAKING WHEN GETTING UP FROM A CHAIR AND PASSING GAS IS NORMAL. I THINK THE MAJORITY OF US HAVE EXPERIENCED THE SAME TO ONE DEGREE OR ANOTHER. LIKE LEWINO SAID, KEEP UP WITH THE EXERCISES. IT WORKED FOR ME---ALOHA--DAN

chitown
Posts: 90
Joined: Mar 2010

hearing you story makes me feel better...keep us updated and best of luck in continued recovery

griff 1
Posts: 114
Joined: Jun 2010

are you having robotic? good luck i hate waiting. you end up thinking too much about all this crap. my surgeon has done around a thousand so that is a good feeling and he,s caring i like that, the guy is 6 ft 10 and i nick named him banana fingers. i told him that and we had a good laugh. gotta have humor man. good kuck on the 15th. griff

chitown
Posts: 90
Joined: Mar 2010

yes.robotic surgery next tuesday 6/15..plan of catheter off a week later and 2 weeks after that start MUSE 3 times a week (for period of 3 months)and then tablets. my surgeon has done over 2000 surgery since 2002 so feel good about it.

i have had 2 sports injury surgeries and realize every surgery is unique..so keeping finger crossed.

thanks for yours and all of the brotherhood's well wishes

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You have done all the preparation...you know what is going to happen....it's time to relax and do some fun things with the family and loved ones prior to the 15th. I went on a scuba diving trip prior to mine with the wife...I told my surgeon...I need to get another dive trip in prior to surgery because if might be a while before I go again..did it in Nov before Dec surgery. Already planning one to Panama City for the 4th of July...then perhaps another in Sept...then one I already have booked for a week on a live-aboard Catamaran in the Exuma Cays for a week in Feb 2011. Oh and prior to 6/15 you need to work in a bunch of love making with the partner...as you will not feel like doing that for about 3 or 4 weeks from surgery....hurry you only have 5 more days!!

Randy in Indy

chitown
Posts: 90
Joined: Mar 2010

Thanks Randy - done all of that and keeping the partner to a fatigue point!!
Still a darned week left and going crazy on the wait. The anxiety is getting hard.
Interesting I went scuba diving to central America week a ago too, plus lot of hiking. Work is becoming a drag and hard to keep focus. Have worked out the body to a 4 pack, if not six pack, gut and to a super lean frame

So dont know not to do for a week more :-)

DanKCMO's picture
DanKCMO
Posts: 42
Joined: Apr 2010

Chitown,
It sounds like you have gotten yourself into good shape and are used to working out regularly, which should benefit your recovery a lot. Guys like you who work out have bodies that are used to rebuilding and repairing when recovering from exercise.

Hopefully, getting into the best shape beforehand, picking the best surgeon for your surgery and becoming knowledgeable about the disease and treatment will help keep the anxiety to a minimum.

Good luck!

Dan

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I predict you will do fine, and recover rather quickly...and become the sites new "poster child" time for me to retire that position. I just filled out my survey from the missed appointment with the doctor last week and find for both incontinence and sexual function I am scoring very high in both areas (a low score on incontinence and High score on sexual function) I'm sure my surgeon is very happy...just like me!

Keep busy...and I know what you mean about work...it becomes a low priority and back seat from now for about 4 more weeks.

Randy In Indy

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