My story--sweating it out time

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 11/10/2009 9:36 PM (GMT -6)   

about 12-15 years ago I started having difficulty urinating. I was dx. with BPH. The problem would come and go. I was eventually put on hytrin, which helped. I was later switched to flomax (the doctor said it works better) . That worked great. I would use it from time to time but regularly for the last 10 years, 1 pill a day and sometimes 2 pills for a few days if problems worsened. That worked GREAT. If I tried to get off the medication, I would have difficulty urinating, so I’ve been on it.

From time-to-time my stream would get weak. During some of these times it would last awhile and then I would develop infection/prostatitis-type problems. This occurs about once every 2 years or so. That would last for a few days to a month and then go away. Sometimes I was put on antibiotics (cipro or levaquin).

In July again I started noticing a decreased stream. In August I had my routine physical and the PSA had risen quite a bit. Also at this time I started again having these symptoms, which are continuing to this day despite now being on cipro for the past 40 or so days: difficulty (at times – varying degree—usually not severe) urinating, burning/stinging/pain. My rectum also feels "hot" on occasion. Basically, it is a lot of inflammation.

DRE exams have always been fine. I had one in August and Dr. O.i described my prostate as somewhat large and "boggy." I got a similar description from Dr. M, a local urologist, in September.

Meanwhile, I redid the PSA (this time including the Free PSA) last Wednesday (11/4/09) and it is higher still. The PSA numbers are listed below. Right now, I seem to be in a grey area with both the PSA and PSA Free scores. I am convinced that the worsening BPH is causing my other prostatitis symptoms, and both are causing a rising PSA. But of course the big fear is cancer.

Yesterday, I went to Univ. of Mich hospital in Ann Arbor. The urologist was very nice and she recommended we do the new PCA-3 test. This is not finalized as far as FDA approval but it is used in Europe and at specified clinical laboratories in the USA, including Umich. She did say it is very accurate and ready for prime time. I should get the results early next week.

Meanwhile, it is tough as I'm sure you all know, waiting to see if my life will continue down this path or the load will be lifted. Also, if the results are bad then the biopsy will be even more fearful because if no cancer shows up, they probably missed it (with the PSA test, that is so unreliable that a negative biopsy is somewhat more reassuring).

 

If I do have a biopsy, I'll have it done in Ann Arbor (2 hour drive from my house). The local urologist I saw has a good reputation but the SOB scheduled a biopsy before he even saw me for the first. That rubs me the wrong way. Also, he doesn't seem concerned about pain. At least in Ann Arbor, they will do the lidocaine injections which supposedly helps. They will also do the "happy juice" drip if I insist. I might insist.

 

In fact, any words of encouragement here? How bad was your biopsy?

 

So, I want to say hello. I did get to chat with Sonny as my research is leaning towards the robotics Da Vinci surgery with Dr. Menon.

 

Here are the PSA results to date. It sure looks like it could be PC (hopefully early if it is) but it could also be BPH/prostatitis.

Mel

   PSA
11/09 4.19 FREE PSA 24% 
08/09 4.01  
3/8 2.90  
04/07 2.72 FREE PSA: 31% 
11/06 3.1  
7/06 2.67  
2-05 2.2 (after DRE) 
3-04 2.15  
2-03 2.0  
11-01 2.1  
10-00 2  
10-99 1.7  
10-98 1.6  
10-97 1.5  
10-96 1.3  
6-95 1.2  
   

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/10/2009 9:51 PM (GMT -6)   
Mel,

Thanks for sharing with the group and welcome aboard. Hope your stay is short and the PCA3 turns out not to be cancer. I enjoyed our conversation very much. Call anytime.

Good luck,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/10/2009 9:55 PM (GMT -6)   
I had 3 biopsies all together. The last two were 6 weeks apart. While they were uncomfortable and nerve wracking, can't say they were too painful. I had two without pain meds and one with, the one with hurt me more from the shots they injected. You will see a wide range of answers here on that subject, including guys that had to be put under. Pain/fear are very subjective, so it depends on the person.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/10/2009 10:07 PM (GMT -6)   
Hello Compiler~ the biopsy thing is survivable even without anesthetic, my loving uro-doc whom I fired a little later on, never gave me an option and did not reveal the number of biopsies. Half way through I thought it was over, then he mentioned we have 6 more :-) Anyway I tolerated it alright, when you hear the click trigger thing of the gun then you know quick shot of pain is coming. It is probably like someone snapping a rubber band on your _ss (bare of course), not all laughs but you can suck it up. Expect possible blood in urine perhaps once or more, I had hardly any like that even, went pretty well...but not a picinic.

Heads up: get the actually copy of pathology in your hands, no talk, no hand transcriptions, pay for copies if you have too.

I am not exactly a pro-surgery guy, but it has its place, as for Dr. Menon I am atleast a witness that he is honest....honest enough to refuse patients whom are not reasonable candidates for successful surgery (i.e. will fail easily with psa tests), like myself. He did not want my money, which almost every other doc I met with did..my stats were very bad...I have alot of respect for him and his reputation. I met the first DaVinci patient in USA there also, he was coming in for checkup about 4-weeks or so after his op. (2002)

Dx-2002 bpsa 46.6 12/12-biop. 75-95%, gleasons found 7,8,9's (x2), ct & bone scans showed clear(meaningless), total urinary blockage too
(do I seem like a reasonable patient for surgery??? try partin tables etc.-lol)

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/10/2009 10:10 PM (GMT -6)   
Mel, All of us are different, in my case my biopsie was not very painful. I had the lidocaine shot.. That hurt more than the biopsie samples. Best of luck my borther. Do keep us informed.

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


OKboy
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 11/10/2009 10:21 PM (GMT -6)   
Mel: had 12 core biopsy with lidocaine injections. Had one Lortab and one Valium an hour before procedure. Barely felt the lidocaine injections and the 12 cores weren't painful at all. I had really dreaded the procedure and it wasn't as bad as the thorough DRE that preceded the biopsy. Afterwards I was glad that I had been awake for the biopsy. Everyone is different - do what makes you the most comfortable. Good luck.
DOB=March 1959
PSAs (*s done @ uro's lab; others @ family doc): 10/05=1.2; *10/06=1.22; *12/07=1.68; 08/08=1.5; *12/08=1.93; 04/09=2.9; 04/09retest=3.4; %fPSA=15%; *05/13=3.17; *08/09=3.45; 5 DRES=neg.;
06/09 Biopsy=12 benign cores, 3 cores show prostatitis.


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 11/10/2009 10:42 PM (GMT -6)   
Hi Mel,

Like you I had trouble urinating. Thinking back I guess my symptoms began more than 10 years ago. More recently before I had my surgery I would go to the men's room and not be able to relieve myself at all. My wife nagged me and made a doctor's appointment for me. The rest is in my signature.

The biopsy was painless and went smoothly. The hardest part of the biopsy was having to give myself an enema. The surgery was pretty much uneventful as well. At this point I am just so happy to be rid of the walnut (grapefruit in my situation).

I was wide awake for the biopsy but I was given an injection to suppress the pain. I don't know what the injection was but it wasn't painful either.

Wishing you good luck,
Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Four PSA tests undetectable, latest Oct 30


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/10/2009 11:06 PM (GMT -6)   
The biopsy experience varies widely. Mine was uncomfortable but easily tolerable. The nurse was great and we chatted about our kids in college. afterwards I took the train home with no problem. You will have blood in urine and semen, perhaps for two weeks -- very scary, but normal.

At your PSA you are still low, so a negative biopsy would be telling you not to worry for a while. Yes, there are false negatives, but there is no point in worrying -- the right message is don't assume what can't be found.

You are in good hands at A squared.

We hope you are negative and that your visit here is brief.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 11/10/2009 11:13 PM (GMT -6)   
Other than the pre-procedure anxiety I felt (wondering what the result would be), my biopsy was - the procedure - almost uneventful.  I did feel some slight sticking-needle type pain during the sample-taking and I think the instrument dispensed some local pain killer.  The biopsy revealed the presence of cancer and confirmed the suspicion of my primary care physician who told me, before the biopsy, my PSA test result indicated - statistically - a 56% chance of being positive.  I've no doubt my primary care's persistence and the biopsy (and the resulting surgery) have lengthened my life, and probably saved it from the spread of the cancer from my prostate to other locations in my body.  During the biopsy, however, I was exposed to bacteria which sent me into the early stages of septic shock and I was hospitalized in intensive care for 3-days until the infection was brought under control.  The sepsis was a far worse experience for me than the da Vinci removal of my prostate.
 
Get the best advice you can - from the best primary care and urological specialists - and listen carefully to the advice before making your decisions.  Some of us are fortunate to live close to fantastic medical facilities and medical professionals - and the opportunities for treatment/resolution in Ann Arbor are probably as good as about any other medical center community.
 
Best wishes for favorable testing results and if you do need surgery for a successful treatment and speedy recovery. 


Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 11/11/2009 12:10 AM (GMT -6)   
Compiler,

Ya know, ya have a good robotic surgeon at the U worthy of consideration as well. Dr Wood (how rude eh?) has been doing prostatectomies for a long time now. He did Paul's more than 4 years ago and had several hundred under his belt then. Good luck and be well.

Swim
 Hilarem datorum diligit Deus


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/11/2009 5:33 PM (GMT -6)   
compiler,

No one - and I mean no one - gets more nervous and fearful about medical things like biopsies than I do.

But I have to say that the biopsy turned out to be no big deal - one Valium 45 minutes before was more than enough. Just know ahead of time that the gun makes a loud noise - not scary really, just loud. I would have probably jumped off the table if I hadn't known that ahead of time!


Zen9
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