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newly diagnosed.FRUSTRATED!!!!!!

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jul 5, 2020 7:35 am

Well guys my wife ended up rushing me to the hospital, turns i did in fact have a bladder infection,start the antibiotics this morning, here i thought the burning sensation was normal  

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Jul 5, 2020 7:52 am

buddy1‍ sorry to hear that but at least you got it being looked after sooner rather than later.  Having a foreign object inside you body can cause infection and this procedure does involve a bodily waste track being cut apart and sewn back together so it is common.  Now hopefully the real recovery can take place!

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Lacey_Moderator on Jul 5, 2020 8:10 am

buddy1

Glad you got checked out! I hope the antibiotics work quick and you're feeling better ASAP. 

Did you sleep any better last night? 

Lacey

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by vic777 on Jul 5, 2020 9:35 am

Hey Buddy,

I just wanted to say that I am so with you in terms of your frustration with our system.    I am also sick of hearing people compare us and our system to the US, you know, "oh you could lose your home", oh everything cost a bundle, etc. etc.  All that I know is that I am 67 years old and have paid into OHIP during all of my working years and of course paid taxes on everything and anything the government comes up with, period.  We are not only entitled to receive health care but some how somewhere along the line someone dropped the ball on the key words involved.  i.e. HEALTH and CARE. Just keep doing what you are doing, you will find almost everyone tells you that you need to be your own advocate which I know is frustrating but it is our reality.  Involve your grown up children (well if you can get one that would care to be in that position) it really helps to have someone watching out for you despite your wanting or needing to do it all yourself-it will really help with your personal stress level. Go get 'em

Ruth

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Arnie on Jul 6, 2020 5:52 am

Sorry to hear about your problems. My surgeon arranged for a daily VON nurse visit at home to check my incision, catheter and to deal with any problems I was having. That was very helpful and relieved any anxiety that I had about something being wrong or normal. Not only was she available for visits but a VON nurse was on call 24/7. All the best.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jul 6, 2020 6:11 pm

well it has been 48 hrs since i started taking the antibiotics and still do not feel much better, my pharmacist who is a super guy told me if i do not see any improvement within 48 hrs to get back to a Doctor or hospital. i did pass a very large blood clot earlier today but my urine smells bad and is cloudy and the burning is still present, the other thing i noticed other than being so tired is my knees and ankles ache something terrible and stabbing pain coming ang going in my Penis.  i want to thank you all very much for being my sounding board, i have been having a few dark days lately and can feel  helpless at times     

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Al_XB on Jul 6, 2020 11:30 pm

Hello Buddy1,  I have been away from this board and only read the prostate posts I see on the weekly digest.  I'm on a watch and wait with PSA at 7, Gleason 4 and I post my status every 6 months. It is a slow cancer.  Thanks for ranting and posting your experiences. They may help you to vent and get feedback, but your comments also allows us to gain greater insights into what to expect. My brother-in-law is going for prostate surgery in a couple of days and you have given me some "issues" to tell him about. Your posts are much appreciated. Hang in there. It seems each trip on this journey is different. Oh.. almost forget your question. I was drinking 2-3 cups of tea in the evening and was up 2 to 4 times a night. Instead, I switched to plain water and I can go the whole night to about 6 am. Too much water or a coke will get me up at least once per night. It is probably different for each individual. 

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jul 7, 2020 12:07 pm

Al:  Yes caffeine will do that, in Dr.Walsh;s book he mentions caffeine must be dropped for a while as it acts like a dieruetic and with trying to relearn bladder control it makes it tough, i switched to de-caf although my urologist never mentioned stopping caffeine as a matter of fact i was served coffee while in the  hospital, mention to your Brother in law to watch for those Bladder Spasms as they are the most painful thing ever experienced, and the need to get anti-spasm drugs is very important as the bladder constricts and flushes all the urine out and the catheter can't take it fast enough and the rest spills back into the pelvis area of the surgery and will be drained through the drain tube, and i believe that is why i am still dealing with a bladder infection
 

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Jul 8, 2020 7:16 am

mo
rning guys: Well i had a sit down with my familly doc yesterday to follow up on the UTI that has been giving me grief this past week or so, we drew blood and will get another urinalysys done this Friday,while i was discussing my challenges during the surgery he mentioned he has a copy of the Pathology WOW, so we went through it together  
1. gleason 7/10 no surprise
2.seminal vesicle invasion : NONE IDENTIFIED
3Surgical Margins: All surgical margins free of Tumors
4PERINEURAL INVASION:PRESENT IN THE POSTERIOR  RIGHT LOBE  [THIS ONE SCARES ME]
5 LYMPH NODES one on right side and 3 on the left side are all negative for metastatic prostatic adenocarcinoma

Can anyone offer some insight in  #4 Perineural invasion? I have googled it but it sounds like a gateway for the cancer cells to have spread to nerve bundles in the surrounding area, my Family doc, didn't know and i don't get my telephone appointment with my Urologist until next Friday.
the rest sounds POSITIVE

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Jul 8, 2020 7:30 am

buddy1‍ I personally don't use google but my search engine provided this link....

https://malecare.org/perineural-invasion-on-prostate-biopsy-does-it-mean-that-i-have-advanced-prostate-cancer/

I wouldn't jump to any conclusions on your own.  If you can call you urologist and see if you can move up your appointment it might help ease your mind a bit and he/she can explain this finding better.

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Lianne_Moderato on Sep 18, 2020 3:48 pm

Hey buddy1‍ 

Just checking in to see how you are doing.
Any updates since your last post?

Lianne

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by buddy1 on Nov 22, 2020 1:17 pm

Hello all: Very sorry for dropping off this site for a while, i am doing well 5 months post-op and have have one post -op PSA blood test which came back un-detectable and . i have another one in 2 week, i was wearing liners up until last week and have no leakage since. I still have no ability to achieve an erection although my Urologist isn't to concerned,he mentioned it could take a year, he did prescribe me a daily dose of Tadalyfil/cialis but i haven't bothered with it, i am back to strength training/weight lifting with no leakage and that is a GREAT thing for me. 

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by WesT on Nov 24, 2020 1:31 pm

buddy1‍ good to hear!.  Good luck with your next test.  I get my next PSA test done on Monday and meet with my urologist in two weeks.....

Re: newly diagnosed.FRUSTRATED!!!!!!

Posted by Charles on Nov 26, 2020 2:44 am

 . . . I still have no ability to achieve an erection although my Urologist isn't to concerned,he mentioned it could take a year, he did prescribe me a daily dose of Tadalyfil/cialis but i haven't bothered with it, i am back to strength training/weight lifting with no leakage and that is a GREAT thing for me. 


You should read some stuff (and watch some videos) on "penile rehabilitation".   Check the MSKCC.org website for videos by Dr John Mulhall, and read:

. . . "Saving Your Sex Life: A Guide to Men with Prostate Cancer" (Dr. John Mulhall).

Even if it doesn't have any obvious effect, the Cialis helps your erectile nerves recover.

Your doc was being optimistic.
 
. . . (a) Your natural erections may _never_ return  -- he should have made that clear.

. . . (b) Mulhall doesn't judge "final status" until two years after surgery, not one year.

.     Charles