YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Ralph Mole and Julie live in Arkansas, U.S.A. He was 57 when he was diagnosed on March 10, 2008. His initial PSA was 3.5 ng/ml, his Gleason Score was 6 and he was staged T1c. His choice of treatment was robot laparoscopic surgery. Here is his story.

Last February I went in to our family doctor for my annual physical and prostate screening, just as I have been doing since my father was diagnosed with prostate cancer about 15 years ago. Three days later the doctor called and informed me that my PSA was mildly elevated (3.5, up from 2.7 last year) and that he wanted me to see the urologist.

Fortunately, he scheduled my appointment with the Urologist that did not care for my father. Right or wrong, I do not trust the doctor who did surgery on my father, surgical complications nearly killed him. I live in a small town, and there are only two Urologists close to our home.

Three days later my appointment at the Urologist comes up. After another DRE during which he feels nothing, he schedules a biopsy for ten days later.

At this point, I am more worried about the biopsy than cancer, after all cancer is something other people get, not me.

Then, on the morning of March 10, I receive a cell phone call while I was driving home from work. The doctor wants to inform me personally of the biopsy results. Six out of twelve biopsy results positive for cancer. Later, I found out that it was actually four out of twelve. Luckily, I am not the type to be paralyzed by panic, and I continued driving, scheduled an appointment to discuss treatment options and then called my wife to give her the news. An hour or so later, I quit feeling like I had been kicked in the belly by a very large and mean mule.

Over the next week while waiting for the consultation, my wife Julie and I did some extensive web research on prostate cancer and we went into the doctors feeling well armed with information, much of it conflicting.

Once again, my fathers experience with prostate cancer made several decisions inevitable. He had chosen to wait and watch. Two years later he had an open prostatectomy which as I mentioned earlier, went badly. Four years later the cancer recurred and he was gone within two years. No watchful waiting here.

The doctor went over the biopsy results, scheduled an MRI and recommended surgery. He also mentioned that as a surgeon, surgery was his preferred treatment but that I should see a Radiation Oncologist and a Da Vinci qualified surgeon.

The Radiation Oncologist would have made a great "hard sell" used car salesman and that option was discarded due to a lack of trust. Also, surgery seemed to be the safest option in terms of long term survival, although that is where much of the conflicting information was centered.

The Da Vinci surgeon was 80 miles away in North Little Rock and there was a long three week wait to see him. When the day finally came, I knew that he had done the first Da Vinci surgery in Arkansas and had done nearly a thousand since. I still do not know if any of his patients survived but he radiated confidence and we scheduled the surgery for May 15. He also mentioned that the cancer was centered on the left side and he felt that the nerves on that side should be taken as well, resulting in a 70% chance of erectile function returning. OOPS, that translates to a 30% chance it will not. Julie later commented on how well I took that news. Apparently she did not feel that mule kick again.

That brings this story up to the present day. Julie and I are getting ready for surgery, finding the things that will make the recovery easier.

It seems that once the decisions are made it gets a lot easier. We still research the web, Julie researching recovery while I research sexual function. No surprises there.

I will update this post as soon as I can, after surgery.

 

UPDATED

June 2008

 

 

This is my story following Da Vinci radical prostatectomy.

I kept a journal for the first two weeks after surgery, and I will include it here in the hope that it will provide some usable information. I hope that you will realize that my story is not the same as everybody elses. Each of us will face our own issues and have different outcomes and experiences. So far, I must consider my story as an unqualified success.

Surgery day -1

I have completed work and will be off for the next six weeks. My Urologist had said that I could return to work after two weeks if I could avoid any lifting for at least six weeks. I can not do that in my job, so six weeks it is.

I am on a liquid diet today and I hate it.

Somebody in one of the prostate cancer groups asked what they should do on the day before surgery. The overwhelming response was .... SEX. My wife and I tried our best to follow that advice today.

Surgery day

We woke early and made the 100 mile drive to the hospital.

Arrived 1 hour early, and was immediately prepped for surgery.

Came out from under anethesia at about 5:00PM

At 8:00PM I succeeded in browbeating the nurses into disconnecting enough monitors and tubes for me to be able to walk around the ward. I continued taking 100 yard walks every 2 to 3 hours until noon the following day.

I had a small post op bowel movement that first night. There was very little pain from the surgery that first night but my digestive tract was causing some pain.

Day 1

Today I should get out of the hospital. All I need to do is fart.

My Urologist will not be in today, so I am waiting for his partner.

At 1:00PM the nurses ask if I am ready to leave. I still have not seen the Urologist and I still have not farted but I answer "YES".

There is some confusion about where Julie is supposed to pick me up and she spends 45 minutes searching for me. I pile into the car and we are off on a 2 hour drive home, without benefit of pain medication.

The freeway between Little Rock and home would make a substandard covered wagon trail and every bump in the road takes it's toll.

At 4:00PM we make it home, just in time for a second bowel movement. Still no farts.

I suspect I was in a bit of shock at this point. I was freezing and the temperature in the house was approaching 90 degrees.

I stay on the couch, covered in a masssive quilt while Julie makes another 2 hour round trip to get my medicine.

By the time Julie gets back at 6:00PM the chills are gone, the pain has eased up and the rest of the day went quite well.

CONCLUSION: Pain meds are a good thing if faced with a long ride home

DAY 2

Today starts out quite well, no need for pain meds. I start walking on the treadmill and I start eating a bit. Over the course of the day I eat 3 slices of bread and jam.

At about 5:00PM I start feeling a bit of bladder spasms which feels like I need to urinate even though I have a catheter in and it is draining well.

At about 9:00PM the fun really starts. I still have not passed any gas and the pressure is building. I triple my treadmill waking distance to .6 miles every 2 hours. Still no farts.

Julie is concerned that I am overdoing the treadmill. I am getting concerned that I am going to explode.

AT 11:00PM I take a Fleets enema against Julie's advice. Still no farts.

At midnight I call the nurse who recommends NOT taking the enema....OOPS

By 1:00AM all of the neighbors are wakened by booming farts and loud cheers. No problem, there are no neighbors.

CONCLUSION: walk, walk then walk some more.

DAY 3

Today the catheter starts getting a bit irritating.

I start eating a bit of real food, scrambled eggs and toast for breakfast and a chicken fillet and mashed pototos for dinner. This causes no discomfort. It also causes no bowel movement.

DAY 4

The bladder spasms are worse this morning and the medicine does not work. The cath bag is filling rapidly (700ml/hour)

Julie and I go to our local urologist about the spasms, his nurse does a sonagram, finds the bladder is empty and sends us off with instructions to call the urologist that did the surgery. We do a bit of shopping while we are in town and by the time we get home the symptoms are gone.

We also get a bit of bad news, the catheter was supposed to come out on Wednesday, but the Urologist will not be available until Friday.

DAY 5

Normal bowel function resumes this morning. It was neither quick nor easy. After nearly 3 hours it was done. I felt exhausted but otherwise quite good.

I also found out that I could have the catheter removed at our family doctor's office in the morning...... Yessssss

DAY 6

We received word from the Urologist office in Little Rock that the pathology results were back. No cancer showing in the lymph nodes and good negative margins.

He puts me on Cialis starting today. 1 pill every other day. He also tells me to take it easy today and to restart Keegal excercises in 3 days.

At 1:00PM the catheter is removed. The proceedure is painless though accompanied by a very strange sensation.

I had a slight urine leakage between having the catheter out and my first normal urination at 12:00. There was a slight red tinge on the pad and a much lighter red tinge in the toilet. Urine stream was quite weak as the Urologist had forewarned.

By 10:00PM I stopped wearing the pads and found no signs of leakage overnight.

DAY 7

Still no incontinence problems.

I am still having problems with bowel movements and the doctor's office suggests Milk of Magnesia.

CONCLUSIONS FROM WEEK 1:

Unless you can walk around the house naked from the waist down, consider getting some nightshirts before the surgery

The small catheter bag may be a pain to keep empty but it is more convenient if you occasionally need to get something done without warning.

Try to have some spare catheter tube retainers on hand, the bag was comfortable at first but it gradually became stretched tight. Moving the retainer an inch and a half would have relieved the irritation a lot.

DAY 10

Two things of interest happened today:

First, I had more bleeding than normal from my penis during a bowel movement, enough to cause Julie and I some concern. We went to the local emergency room at 1:00AM and were told that I had a urinary tract infection. We went home with the antibiotic and orders to call the Urologist In N. Little rock after the long weekend.

The second thing was much better. While we were lying in bed unable to sleep, Julie decided to try out the Cialis and I acheived a usable erection...... COOL I thought that I had lost a bit of length but Julie said there was more than enough there to begin with. Julie is absolutely my very favorite liar. No sex though, doctor's orders.

DAY 12

The long weekend is over, we call N. Little Rock and were told that the earlier bleeding was normal and probably a loosened scab from the surgery. It was NOT an infection.

DAY 17

I have been having normal bowel movements and no bleeding since day 12.
I have had two more erections
I have experienced slight incontinence on two occasions, so I wear pads if I am going out for any length of time.

CONCLUSIONS:

Your partner is as important to your mental recovery as your surgeon is to your physical recovery.

Incontinence pads are designed to stick to the head of your penis, not your underwear.

Drinking water constantly helps the feeling that you always have to urinate, at least when you feel that you have to go, you really have to go. Drinking tea is not quite as good as drinking water, drinking coffee is unthinkable. That bottle of Crown Royal in the cubboard looks inviting but I am going to leave it alone for a while.

Use you head when working after surgery, moving a ten pound brick was against doctor's orders but caused no problem. Using a half pound scrub brush on a two-floor extension caused some pain for a while.

Dogs and catheters do not mix. Plan on how you are going to restrain Fido's enthusiasm before you leave for surgery. Even the best behaved dog is going to be curious and I do not have the best behaved dogs.

It is now 5 weeks since surgery.

My wife and I have successfully had sex twice. The orgasms were great although dry.

Incontinence is nearly a non-issue

Bleeding and bowel functions are non-issues.

 

UPDATED

September 2009

 

PSA still less than .1

Dribbling is no longer a problem

Sexual function better than expected though not as good as I would wish.

Hey, I'm still alive so all is good.

Ralph's e-mail address is: ralphandjulie@rjmsilver.com