YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Dino Brown and Lainie live in Massachusetts, USA. He was 62 when he was diagnosed on February 28, 2008. His initial PSA was 4.3 ng/ml, his Gleason Score was 6 and although he says his staging is unknown it seems from what he says that he would have been staged T1c. His choice of treatment was RP Laparoscopic. Here is his story.

I had symptoms of BPH (Benign Prostate Hyperplasia) for about 40 years following a motorcycle accident that focused blunt force trauma to my groin. DRE (Digital Rectal Examination) never revealed any other symptoms.

I began PSA testing in 1998. I always had an elevated level 3.8-4.0. I feared a biopsy, needles up my butt was not my idea of fun and constantly put off having the test. (Note: I'd do the biopsy daily if I could avoid the MRI.) When my PSA moved up to 4.3, I resisted further investigation for about 6 months while I had my Urologist investigate the possibility of an infection. Finally, I bit the bullet and had the test.

Seven of the twelve core samples turned up cancerous (February 28,'08). I had already scheduled a good-bye tour of distant friends so I didn't get the "talk" until mid-March. My prostate was about twice the normal size making me a weak candidate for beam therapy and a non-candidate for seed therapy. So, I opted for laparoscopic radical prostatectomy to preserve the nerves and improve my long term prospects for urinary control. My heart failed about three years ago and pumps at about 50%. They almost lost me the night after surgery. My heart was too burdened to fight the drugs and just started to quit. I was so mellow that I didn't have the sense to suggest they re-check it in the morning. So, some running around later, and no chrome spike to the heart, I rallied and here I am.

The eight weeks before surgery, I worked hard and lost 30 pounds. Surgery was aided by this and I was done in 3.5 hours. I learned that the cancer had breached the prostate wall but that the margins were clear. That means the horse had left the barn but had not appeared in any surrounding fields. Horses do that I guess. The pathology showed that my prostate was riddled with cancer, the Gleason was upped to 7 but I never learned the Staging. What difference, you make it or you don't. I would have preferred the latter and advised the surgeons not to administer ANY heroic efforts. That's just me. I've never been real upbeat.

So, I live with the catheter for 10 days, mow the lawn and build a tree house for my youngest (11) filling my big bag, which I strap over my pant leg with the cuff rolled up, with blood and urine. That travel bag isn't worth much. No harm done but do take it easy. That's not to hard to do since the lawn won't need mowing for another 5 days anyway. Basically, I conduct life as usual and pass out every now and then. It works for me.

So they had me a Maxi pad and 4 100mg Viagra and send me on my way. Having been very sexually active, I have no idea what I'm supposed to do with Viagra or what it is supposed to do with me. I've tried it; I get a headache. Nonetheless, from day one I achieve 50% erection. Even with the catheter in. That is how it has remained. From day one, I have had continual incontinence and that is how it has remained. I feel no urgency, no flow, no evacuation. I don't feel anything but the warm wet in my crotch. I don't feel my stomach working and still need laxatives for BMs. I never felt any pain from the surgery and have taken none of the medication. I can achieve orgasm but even I'm not interested when there is pee all over the place.

Something of note: I worked hard to overcome dyslexia over my lifetime and was successful at about 50 years old. After the surgery, I couldn't read, couldn't spell, couldn't keyboard, and couldn't do long division math in my head - heck simple adding was hard. I'm getting over that. I think it was a side effect of the drugs or overdoing it. Now in my 7th week, I make fewer mistakes. I see a marked improvement.

Right now, and for the last 7 weeks, I almost wish I hadn't done it. I think I'd prefer death in 5 years than the absence of life for the next 35 years. I am not to get discouraged, they say. But, I feel, one way or the other I will not be wetting my pants after one year.

 

UPDATED

July 2008

 

 

The following is an unsolicited update to my doctors sent this morning. They were foolish enough to give me their e-mail addresses so I update them every 4 weeks whether they want it or not. My initial update, sent yesterday on 9/20/08, suggested that there was little change from the bleak picture I painted initially as far as my incontinence goes. I sought their encouragement or an indication that it was time to begin fashioning the noose. Over night, things changed rapidly:

Good morning, Dedicated Medical Professionals. The almighty delights in making a fool of me. She laughs so, I enjoy it myself. Like the abused child, I prefer the bad relationship to no relationship at all. In my heart, I believe she loves me. As soon as I messaged you yesterday, things started to change. Three times, while sitting at my computer catching up on a week's worth of e-mail (I was camping, 'memba), I got up slowly, made my way to the bathroom and was able to pee. No great sensation but the longest run of guessing right I've had. The real change came in the night. As usual, I couldn't sleep until the kidneys kinda settled down at about 2:00 AM, after having two good sized bowls of cereal (Honey Nut Cheerios with a little Grape Nuts for fiber - ah, the sugar). Each hour thereafter until 6:30 AM, I was awakened with an urge to pee. I made my way to the bathroom and did, in fact, pee, even felt relief. My diaper was dry enough so I was able to use the same one until the 6:30 event when I had to change it. It wasn't real wet but I was getting tired of it. This miracle was repeated at 8:00 AM and 9:30 AM when I finally decided that additional sleep was not in the cards. I'm still in the 6:30 diaper and feel dry but have probably leaked a little (by my standard). [Side note: I woke up at 9:30 feeling so sick that I didn't think I could get out of bed. After laying there a while I got board and, knowing that I feel better when I get up, did so and felt immediately better. What's up with that? Happens every day since the surgery. Coincidence???]

Now, about that ED ... just kidding. My libido has been hard hit by the medication I take to sleep which has been a life long problem. Coupled with the "side effects" of the surgery, I'm not hopeful. My dear wife will have to take a lover. Not to far I hope, as I need her. I took 50 mg of Viagra last night and tried my best. I achieved about a 50% erection, climaxed (not what it used to be but still a good time) and even ejaculated ... lots of pee!! One gentleman at the camp site, who was fully recovered - seems like there are a lot of prostate-less men around - commented that he enjoyed his climaxes more now and it wasn't as messy. Well, I'm not there yet but I'm somewhere.

At the risk of being the almighty's straight man yet again, perhaps I won't be needing to fashion that noose after all. I just know the fun she is going to have with that one but, what can I say, I'm encouraged.

Stay well. Thank you for your help and patience. I'm looking forward to reviewing the PSA tests with you after my Newfoundland trip.

(One can't help thinking, that is when she'll have her next big laugh. It's the perfect set up. How can she pass it up?!?)

 

UPDATED

August 2008

 

 

August 11, 2008:

Hoping not to jinx things, I appear to be getting better. My long ago healed incisions are starting to itch. Every now and them, my stomach hurts, I woke up hungry yesterday, and I don't need the laxatives anymore. I'm guessing there was some trauma to my abdominal nervous system and it's been resting for 10 weeks.

I even have some feelings of urgency and have been able to pee "normally" a number of times. I'm still in the diapers and more often than not, I don't feel a thing and get wet. But, progress is being made, I believe. The bad news is that new statistics suggest that I will, probably (50%), have a recurrence of the cancer within 5-8 years if not sooner. It all depends on how long the cancer was active and I believe, given the degree of infestation (total), it was there for a long time (because I was afraid to get the biopsy which turned out to be a breeze. God has had a good time with me. At the risk of being presumptuous, I think I've brought her more amusement than anyone for a long, long time.)

I've just had blood drawn for my first follow up PSA. That will be telling and since I'm not feeling sick all the time, I'm optimistic. I hoping the sick feelings were caused by dehydration and malnutrition that may be passed now that things are working more normally. Time will tell.

I'm off on my annual motorcycle tour which will be a challenge given the continuing dependence on diapers, the long hours in the saddle and my tendency to tire easily. If I can't bull through, I'll stop and the boys can stop with me or I'll catch them later. It is what it is.

 

UPDATED

September 2008

 

 

This is Memorial Day, Monday. Last Friday, I returned from the annual motorcycle tour of Newfoundland, the island gets smaller every year but the friendships grow stronger.

Despite the rather dismal start to my presumed recovery, one never knows, as I enter my 14th week after surgery, I believe I'm gaining some control over incontinence. Points of encouragement:

1 - I used fewer diapers on my two week trip than expected.

2 - I was able to hold my urine while gassing up, getting off the bike, paying and working my way to the men's room where I would deposit some pee that in the past would have just dribbled into my diaper. I'm far from diaper free. I'm still a 24/7 wearer but they are less wet over a longer amount of time.

3 - I am quite good at holding my urine while sleeping although I have to get up about every 1-1.5 hours to pee. Apparently, the odd pain I feel in my gut is what passes for urgency now. learning that allowed me to make the 100 mile car ride from Portland, Maine today without much trouble (except the pain) and get to the bathroom for a long and satisfying urination.

4 - I can usually get about 50% of my urine in the bowl if I am only sitting around and talking or working on the computer. As expected, moving around and doing stuff, even as simple as standing up, still causes significant wetting.

Erectile function is little improved over the last 13 weeks. The doctors are thrilled that an older gentleman can achieve 50% erection at this point but I'd prefer 110%. I experience orgasms but they appear to be declining in intensity. It is a great deal of effort to reach orgasm (I take anti-anxiety medication which contributes to this) and the reward is less enjoyable each time. I'm beginning to loose interest but I'm not yet devastated over that. Maybe I never will be.

I learned on the road that my first follow up PSA test was <0.01 or 'undetectable'. I'm not heavily invested in my future but it is one less thing to put in the mix at decision times.

Any follow up treatment will be given much more consideration than this initial treatment - when the prostatectomy doesn't get it, things start to get ugly.

Later: I had my first official follow up with my surgeon. He was reassuring and his NP, Jodi, diagnosed a yeast infection I had diagnosed and treated unsuccessfully as diaper rash. Monistat 7, the feminine yeast infection cream, was effective after the first application - no more burning and maddening itching. Regardless, I will not continue my follow up appointments as it appears to be no convincing cost-benefit argument. I'll track my PSA with my GP and if I spot a rise, I will contact the appropriate medical personnel. I have a high insurance co-pay for visits to a specialist so I'm not recommending that everyone follow my example.

I had the presence of mind, finally, to obtain my pathology report. Here's the details of my situation:Prostate gland and seminal vesicles, radical prostatectomy:

A. Prostatic adenocarcinoma, Gleason score 7 (3+4).

B. High grade prostatic intraepithelial neoplasia.

C. Begnigh prostatic hyperplasia

D. Unremarkable seminal vesicles

Note: The carcinoma involves both lobes of the prostate gland. Approximately 10% of the prostate gland is involved by tumor. Extraprostatic extension of tumor is present ... Perineural invasion is present. The seminal vesicles are free of tumor. The margins are free of carcinoma.

The pathologic stage is: Primary tumor (pT): pT3a: Extraprostatic extension.

The prostate gland with attached seminal vesicles and portions of vas deferentia weighed 60 grams.

The prostate gland measured 5.5 x 4.4 x 5 cm (about 2.25 x 1.85 x 2 inches) - [It appears that over time a nut can turn into a fruit; a walnut into a Clementine. - db].

 

UPDATED

October 2008

 

 

After 21 weeks I feel I've been deluding myself. Circumstances have lent credibility to progress but when circumstances return to normal - I'm back at my usual tasks - incontinence is a persistent inconvenience. I am still experiencing continual incontinence. When I sleep there is still some degree of control and I don't always dribble all over the bathroom after I shower. That is progress but the progress has not continued. I appear to have reached a recovery plateau.

I still do not feel hunger very often nor do I get thirsty. However, this is not the blessing one might suppose. Without fluid, I am less wet, but subject to bleeding ulcers and damaged kidneys. Nothing that a little extra fluid can't fix and I am back to drinking as much as I can remember to. The ulcers are healing and my urine is clear again. So, do try to get comfortable by not drinking too much. Drink all you want and just keep changing those diapers.

These are no longer early days. I'm coming up on 6 months. I would suggest that either the good Dr. Wagner at Beth Israel in Boston, erred in some way, or the disease was not as described. I firmly believe that people are pretty much the same. Only the afflictions vary. I doubt my composition is so alien that what was presented as a perfect prostatectomy should take this rare and unusual course. Of course, a perfect prostatectomy probably only means that the prostate is definitely gone!

Check with the nearest hospital support group**1 to get the inside scoop on your doctor's success/failure rate. To late I learned that my local support group had one other man who had been to Dr. Wagner. He was suffering the same continual incontinence that I do. Coincidence? Maybe.

 

UPDATED

December 2008

 

 

The below is my 6 month update to my surgeon followed by his reply:

Good Doctors,

It is 6 months now since the day my diseased prostate was excised. I am still plagued by near continual incontinence. But, my coping skills are much improved and I've learned to tuck my penis between my legs when I sit so as to cut the flow of urine. There is little to no sensation of urgency, flow, or evacuation and as I grow accustomed to life in wet diapers, I tend to overlook the sense of wetness often with embarrassing results. I am best when prone, when I do experience a small sense of urgency that awakens me. My sphincter is strong enough to keep me from wetting the floor or the toilet seat but the urine already past the sphincter does leak out into the diaper when I arise. I can usually make it through the night with a single diaper soiled only by the slight leakage mentioned from a few trips to the bathroom. I continue half-heartedly and sporadically with the Kegel exercises.

What are reasonable expectations? It is very disheartening to Kegel over months with little or no associated improvement. Are Kegelling's benefits realized over months? Years? Certainly, not decades!

What do you think we are looking at here? A slow recovery or a stalled recovery? Is it time to consider alternative options?

Erectile function is improving with the aid of Viagra; to what degree is difficult to say. I doubt I can yet achieve penetration but it is now recognizable that I suffer from Parronies suggesting increased rigidity. I'm still at about "half mast" but with additional length and firmness.

FYI: I received a Pacemaker/ICD implant on 10/30/08 and a re-implant on 10/31/08.

Reply: yes this would be considered a slow recovery, not all is lost, just slow. try to re-invest your time in Keigel excercises which i recommend through at least year 1. alternative options (male sling or artificial sphincter) only considered after one year your erectile recovery is also encouraging and as you know that can take 2 years even with Viagra etc. .

Dino's e-mail address is: durinsbane@verizon.net

**1 Two Yana members claim to keep details of the best surgeons - go to RESOURCES and page down [back]