Need Help - what to do?

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midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 8:22 AM (GMT -6)   
confused I really need some help - I have been suffering from some form of BPH/Prostatis maybe PCa which has just gotten worse since the beginning of this year. Had a physical in January from primary care Dr after having a few symptoms of abdominal cramps, etc. Everything seemed ok till the blood test came back w a PSA of 17.4 which he sent me to a Urologist who put me on 3 weeks of Cipro which seemed to work great and everything was fine.
 
shakehead Well two weeks after the Cipro at the end of February I got the same cramps as before & all of a sudden had trouble peeing - I was OK standing up but could not go when sitting on toilet. Went to see Uro again & PSA test had gone up to 36.8 but he told me not to worry and gave me Uroxatral 10mg a night which has helped a little bit but not much - don't have another appt till May 1st with him. 
 
Meanwhile I called, he's out of town and his nurse just told me to drink lots of water. I try but now I can hardly pee at all without straining - I finally went & got a colonic last Monday & the therapist said I had a massive yeast infection!nono
 
I called my primary care doc back and he put me on Diflucan 150mg which I took Tuesday and just got a refill for today but it has not made much difference & I still have trouble peeing . shocked
 
I don't know what to do now - I thought getting rid of the yeast might have cured it but no luck so far,  I can't go on like this much longer, unable to work too much and can't sleep without running to the bathroom every couple hours going trying to urinate .smhair
 
I don't know if this is the right forum for this but if anyone can help I would appreciate it - thanks blush

White Male 55

Post Edited (midi) : 4/10/2010 11:28:33 AM (GMT-6)


James C.
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Date Joined Aug 2007
Total Posts : 4462
   Posted 4/10/2010 8:49 AM (GMT -6)   
First welcome to the Forum, and I'm sorry for the state you are in upon arrival. Now then, some tough advice-not a doctor or prescribing or doctoring, but as a friend. Your situation is really serious and you need to move on the situation soon. A trip to the ER is a good start. Tell them the whole history, especially stressing your PSa test levels and the reaction so far of your current doctor, along with your continuing and increasing difficulty urinating. I hate to say it, but your URO seems to be giving you some very dangerous advice. Long term infections, increasing difficulty in urinating and such high PSA levels can't be batted away by another round of antibiotics and a nice bed side manner of saying not to worry. I really don't want to scare you or make it worse, but you did ask for advice. I suggest you ask the ER doctors for an emergency referral to another Urologist as soon as possilbe. The care and concern you've received so far from your doctors, in my opinion and personal experience is absoluetly awful- my opinion, mind you, I'm not a doctor. The fact that your PSA levels continue to rise and the doctor says to not worry and just prescribes another drug is wrong. Your course of diagnosis should be as follow: first a high PSA tested, then a round of antibiotics, then a retest. If the PSA is still elevated, say above 3.0, then a biopsy is recommended to eliminate or comfirm the presence of cancer. In the meantime, you should be treated for your urinary problems as a seperate issue, to relieve the pain and difficulty of urinating. Just honestly, if it were me and my doctor had treated me as such, I would have fired him and found me another one who could provide the treatment that I needed. I repeat and stress that I am not a doctor, am not providing medical advice, but only giving you my opinion, based on my experience. Others may disagree with me, as you may. But do something soon, as your condition won't get better on it's own. Good luck on your chosen course of action and be sure to keep us informed as to what you do.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN

Post Edited (James C.) : 4/10/2010 11:44:54 AM (GMT-6)


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 8:59 AM (GMT -6)   
Thanks James - I have been crying all night over what to do - my friend at the gym said he had the same problem for over a year and the Diflucan finally cleared it up for him but I think I might have something more serious than a yeast infection.

I asked my Uro for some more Cipro the last time I was there but he said it's dangerous to be on it for more than 3 weeks and that my latest urinanalysis had come back negative and that more antibiotics would not help. In fact, I heard they can cause a bad yeast infection that can infect & enlarge your prostate. So I thought maybe the Diflucan would have helped.

Shoud I go to the Hospital and ask for a Ultrasound or MRI to see how big it really is? I am really scared about the high PSA levels but I did have it after a DRE, and sex/bike-riding two days before - does that make a difference?
White Male 55


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 4/10/2010 9:30 AM (GMT -6)   
Midi, very sorry to hear of your situation. I wholeheartedly agree with John C's comments/recommendations. You need to deal very soon with your current situation, and a trip to the ER seems in order. Also, I am baffled by your uro's instructions. You really need to see someone else. Frank
Dx with PC Dec 2008 at 56, PSA 3.4, Biopsy: T1c, Geason 7 (3+4)

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Junl 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 9:39 AM (GMT -6)   
OK - how soon should I go - and should I take the last Diflucan today to see if that helps? I am also haveing some right side hip muscle pain after sitting for too long...
White Male 55


Kmac
Regular Member


Date Joined Mar 2010
Total Posts : 58
   Posted 4/10/2010 10:00 AM (GMT -6)   
Go asap my friend.. For piece of mind and some answers as the not knowing can be mentally draining and a stress you do not need. All the best and keep us updated.

midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 10:29 AM (GMT -6)   
Thanks for all your help - will go tonite & find out once & for all...
White Male 55


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 4/10/2010 10:32 AM (GMT -6)   
Listen to James and KMac, Go now. You are not going to fix this yourself and the pain is excruiating
Several years ago I had a sinus infection that was driving me crazy. I took some Chlor-Trimeton (chlorpheniramine) and a few hours later I could not piss. It was shut off tight. I waited for an hour and finally gave up and went to emergency. Before I blew up. The pain was excruciating.

Also, my PSA was like yours. Go now. Please.

We are all on your side here. Good luck.
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23. Did I waste 6 months?
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 10:44 AM (GMT -6)   
How did they get you to flow again Jeff? I am still able to go some this morning so the pain is not too bad now - I just took my second Diflucan dose to see if that clears up the yeast infection still - will try to get some sleep now as have been up all night.

My temp is holding at 98.6 & B/P is 128/83 if that makes a difference at all - could it just be a complication from BPH?
White Male 55


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 4/10/2010 11:06 AM (GMT -6)   
You still here?!?!

Catheter. It was not pleasant.
I followed it up with surgery a few months later for a urethral stricture. That was not pleasant either. But a whole lot better than where I am now...

Where do you live?
Go to a good, large hospital if you have a choice. A university hospital, or medical center. You need help and support my friend.

Jeff

Post Edited (Worried Guy) : 4/10/2010 11:18:00 AM (GMT-6)


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 11:20 AM (GMT -6)   
I am in Tucson, AZ where we have a University Medical Center for University of Arizona...I am going in this afternoon/tonite!
White Male 55


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 4/10/2010 11:34 AM (GMT -6)   
Midi,
I'm glad you are going. I can breathe a little easier now. The earlier you go the better. You want to beat the evening rush.
Please let us know what happens. We all will learn something.
Good luck.
Jeff

and, oh, by the way... Welcome to Healing Well.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 4/10/2010 11:41 AM (GMT -6)   
midi, it seems possible that you have 2 seperate issues, the first and most urgent is difficulty urinating and possible infection, and the second the possibility of having high PSA indicators of 'possible' prostate cancer. I stress possible. While infections, BPE and other issues can elevate PSA, the fact that it continued to rise during and after your primary treatment for infection and such possibly indicates something other than an infection is present. Yes, DRE and sex and biking before a test can elevate it, but 2 days is a little on the long side, and you have so many other unknown and unresolved urinary and bladder issues now, there isn't any quick answer to give you. That's why we are saying go get treatment for the immediate things now- the infection, pain, swollen bladder, etc, but don't forget or minimize- or allow any doctor to do the same-that your PSA is really elevated and there's most likely more to the problem that just a trip to the ER and some more antibiotics can cure. I suppose I am hedging around the fact that there is a very real chance you do have prostate cancer, but until you get past this initial stage, you can't tell. With your PSA so high after so much antibiotics, then the next logival and safe step is a prostate biopsy, performed by an aware and helpful Uro who will take care of you, rather than telling you there's nothing to worry about. Sadly, there is much to worry about right now, and until you get some definite answers, by way of further exams, tests and even a biopsy, you and the docs can't really tell you what that is. Get medical attention, get another Urologist and get some answers. Sorry to be so blunt.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN

Post Edited (James C.) : 4/10/2010 11:48:48 AM (GMT-6)


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 12:08 PM (GMT -6)   
Thanks James - I guess my Uro is of the watchful waiting approach which does not seem to be working in my case too well.

I am going today to the ER to be checked out - maybe they can do an ultrasound and/or MRI to see what's really going on inside - like I mentioned my Primary care Doc thought it was a yeast infection caused by the antibiotics that's why he put me on Diflucan - do you think I need another round of Cipro? If so, how do I keep from getting another yeast infection - probiotics?

I wish I had another Uro to go to but I have actually seen two different Drs there in the same office, one gave me the Cipro and the other one the Uroxatral (kinda like Flomax).

There is a famous prostate clinic here but they don't take insurance:

http://prostate-usa.com/
White Male 55


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/10/2010 12:44 PM (GMT -6)   
Midi- does that mean you play piano/synthesizer as in "midi" input/output connection??
Hey liked James words to you and others herein, knowing is important asap.

If you like internet reading while you wait check out:

www.marinurology.com
www.wmfurology.com 

Has info on prostatitis and urinary issues including PCa, etc.

I had total blockage and went to emergency room....smartest thing I did was drive straight there when I knew I could not pee...the pain inside was unreal. Flomax worked for that flow problem I had.


Youth is wasted on the Young-(W.C. Fields)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 4/10/2010 2:27 PM (GMT -6)   
I think James is on the right track here.
This sounds like you have something that needs dealing with TODAY in additional to having something prostate related that can be investigated in the normal way.

Hope you get some relief very soon.

Alf
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 3:30 PM (GMT -6)   
Thanks again - on my way soon - getting some much-needed rest first - yes - play piano/keyboards!
White Male 55


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 5:49 PM (GMT -6)   
Ok an update after some much needed rest - called the ER @ St Joesphs Hospital here and she said the wait is not too bad today but could not give out medical advice over the phone but said come in if you need to, they can do a MRI or Ultrasound if needed.

I then called my Primary Care Dr & he advised if I'm still able to urinate (which I can but slowly) to see how the Diflucan works and come see him on Tuesday - he mentioned that if I'm able to urniate and empty most of my bladder without pain (which I can do today for some reason) I should be OK - but if it totally blocks up and I have a distended bladder feeling with pain then go to the ER where they can use a catheter. He also said drink lots of fluids to flush everything out.

So I guess I am going to wait tonight & see how it goes - I feel OK now - its just at night when I try to sleep does it seem more difficult - the Diflucan is in my body now for the next 48 hours so I told him I would hm on Monday to see what to do next - does that sound like an OK plan for now to you guys?
White Male 55


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/10/2010 6:06 PM (GMT -6)   
Midi yeap take 5 and then see what your doc happens to say, it would be helpful perhaps if you read up on those urology websites, prior just to comprehend the basics. Don't hit a new octave if you have to do any strange tests, watch out for sharps and flats, some of the 7th's, 9th's, 11th's are all good to Jazz it all up, do I sound off key? How about a 1/3 harmony? If you can sing to high C....then call collect and let's get Guiness in the 3-way calling.

Hey do you play any particular type of music, I am big fan of Keith Emerson even though old stuff, well done for taking original classics, then turned into rock and started a whole new appreciation of classics to new young folks..at the Isle of Wright 1970-71 Festival..it was their debut...hardly anybody knew them, the next day global recognition. The inventor of Moog synthesizer Robert Moog had just got one into Keiths hands, it was all brand new back then. What he did with it is legendary and a mega show on keyboards that probably has never been equalled in the rock world. If you see their performances on Youtube or such, be amazed. Wanted to share that history. (LOL)
Youth is wasted on the Young-(W.C. Fields)


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 6:22 PM (GMT -6)   
Yeah man - i think I kinda got into a panic over a worst case scenario - did check those websites some - seem to be doing better so far today.

Thanks for the ELP history - they were one of my big influences - actually went to several of their concerts where he really knew how to play the Moog - also love the Moody Blues!

Thanks for your musical support - really enjoyed it!
White Male 55


spottydog10
Regular Member


Date Joined Dec 2009
Total Posts : 345
   Posted 4/10/2010 7:02 PM (GMT -6)   
Hi Midi,
Glad you feel a bit better, hope you get sorted next week.
As to the music, I'm  just taking a break from mixing a track on cubase.
Cheers
Mike
Age 51
PSA 5.5  june 09
biopsy july 09 gleason 3+3 = 6   5% and 50% in 2 of 12 cores
robotic prostatectomy nov 7 prostate weight 45gm
path report due 8 jan 10
post op psa 22/12/09, 0.04
no incontinence after 7 days
total ed

 


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 7:07 PM (GMT -6)   
Cubase? Is that Mac? I am using Sonar 8.5 for Windows.

Thanks for the advice - looks like you have been thru the same thing I'm just starting to - are you feeling OK after all you've been doing?
White Male 55


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7203
   Posted 4/10/2010 7:26 PM (GMT -6)   

Good luck, Midi. Hope it resolves. I know you are desperately trying to avoid a trip to the ER and a catheter. But, I've had BPH and being unable to urinate is one of the most miserable feelings.

 

Mel


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 4/10/2010 8:41 PM (GMT -6)   
mide, Do keep us posted.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


midi
Regular Member


Date Joined Apr 2010
Total Posts : 122
   Posted 4/10/2010 9:13 PM (GMT -6)   
Thanks - you guys have been great - doing OK for now - just went for a nice Sunset walk - beautiful weather here in the Arizona desert this time of year. Praying that the Diflucan clears it up & its just an infection!
White Male 55

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