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This member is a YANA Mentor This is his Country or State Flag

Bill Elliot and Phyllis live in Arizona, USA. He was 63 when he was diagnosed in June, 2004. His initial PSA was 4.60 ng/ml, his Gleason Score was 6, and he was staged T2c. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

I am a dentist and once diagnosed I went to do my own research on the net. My wife is a medical surgical nurse of 40 years and warned me radical prostate surgery is not easy. After reading all the options I opted for laparoscopic removal. I was referred to a doctor in southern Florida with a lot of experience. He does laparoscopic but does not use the robot.

I had my surgery Aug 24, 2004. I had no pain. I was in the hospital one night. My wife, the nurse, painlessly removed the catheter when we got home on the 8th day. I was pretty wet for the first 6 weeks, but managed to go to Japan to teach a course in 5 days total round trip. Saw a lot of Japanese bathrooms.

Now at 6 months I still need one pad a day, 98% dry at night. Since I am very active at the dental chair, (I am a gum and implant surgeon) I am sure this is a contributing factor in my incontinence.

I have not yet had an erection though the nerves were spared. I have tried Viagra 100mg 3 times to no avail yet which is frustrating. I am told it could take a year. The good news is I just had my second post op PSA which came back at <0.1ng/ml which is excellent.

If I had the chance again I would do LRRP but maybe be sure it is done with the robot. I have a feeling the vision is better and thus encourage earlier return to continence and potency.

UPDATED

July 2005

I am now 10 months out from surgery. I have had three PSA readings of <0.10 ng/ml which is excellent. It took me 10 months to dry up but I am very active. I have not had an erection yet, however I am very happy that I do not have any signs of recurrent cancer and feel great.

I would still do surgical treatment again for the peace of mind knowing the cancer is out for now. I understand at my age it may take up to 2 years to gain sexual potency, but I am working with different drugs and routines to try and regain it.

For those of you just starting prostate cancer is a beatable disease, just pick what is right for you.

UPDATED

August 2006

I am now 23 plus months post laparoscopic surgery. At about 23 months Viagra finally worked giving me an erection usable for penetration. It was a long 22 months in which I had tried and used shots (sometimes successfully) and a cheap machine unsuccessfully. The point is gentleman, patience is the best healer. Our doctors universally underestimate how long it takes to recover potency following these procedures. I am a professional in another type of surgery and I have followed over 15 men I have advised who had everything from RP to Robotic and most of them had a long battle to regain potency even with devices and drugs. However don't give up because eventually you will regain most of your urinary control and your potency. I will not wait and see if in a few months I can get rid of Viagra too.

I am always available for advice and consult.

UPDATED

August 2006

The last year (3 years Aug 24) has been following the PSA which has remained at <0.1 thankfully.

I have had various results with combating ED problems. At times the drugs Viagra and Levitra have worked, but not consistently. I am contemplating going back to trying the injections which I had used before.

Other than that I feel healthy and still working. I would be happy to help others through the treatment and followup process.

UPDATED

January 2008

To start the New Year I will report that after 3.5 years I have predictably gained my potency back with Levitra. I would like to encourage all of you who are fighting this problem to remember that if you were 60 plus when you had the surgery erections just don't pop back up. It takes time and patience from you and your partner. I think 2 years and over is not abnormal for recovery. In the meantime you can try shots and vacuum devices to fill in the void.

Don't get discouraged and remember we are all and have gone through the same problems.

Good luck to all.

UPDATED

March 2009

Everything is ok. I did go from less than <0.1 PSA to 0.20 but my original surgeon and a local urologist said not to sweat it for now.

Also at 4.5 years Levitra has now predictably kicked in when I use it. Problem at age almost 68, I forgot what I was trying to use it for.

I still leak when tired when active which I still do a lot of dental surgery and work out. The bladder problems maybe more underestimated before we have this surgery than we ever knew.

UPDATED

July 2010

Since my last update my PSA has gone from <0.1 slowly to 0.3. Consultation with my surgeon and my local urologist have me re checking the PSA every 6 months. If and when it reaches 0.4 it has been suggested I have localized radiation to prevent any recurrence from reaching the bone.

I have also become predictably responsive to Levitra 10mg. Sometimes I can use as little 5mg. Another trick I have found is to take 1/2 of a 10 the evening before we intend to rendevous and then take 10mg 1/2 before the event. Works for us if not perfect.

UPDATED

May 2011

My PSA at about three years went from <0.1 to 0.10 which I double checked. Then about 14 months later it went to 0.20, then about a year later to 0.30 at which time my urologist said at 0.40 I need radiation.

I will be doing this in August or September. My friend, who is a radiation oncologist in Florida (I am in Arizona) said I need True Beam Varian technology which deliver Rapid ARC 90 sec doses. There is only one set up with a radiation oncologist who specializes in prostate and testicular cancer, so this is what I will do. My urologist says if it goes to 0.5 effectiveness drops.

UPDATED

May 2012

I had a residual lesion diagnosed in April 2011 as my PSA crept up to 0.4.

In August and September 2011 I underwent 38 sessions of Varian True Beam radiation 5 days a week. The fun part was holding 32 oz of water every day until after the radiation treatment. I did fine during the treatment but in the middle I started getting some rectal bleeding which persists now if I eat toast, chips, etc. I was responsive to Levitra 80% of the time before the radiation but now the Trimix doesn't work right either. However my PSA dropped back to <0.1 so have to be thankful for something.

Hoping it will stay that way.

Bill

PS. I had the pleasure of meeting one of mentorees in Ashville, NC on a recent trip. Last year we ran into another one who was on business to Beijing while we were touring China. We had met once before, but it was a nice coincidence. I have now met 4 out of the 10 people I mentored through the years.

UPDATED

July 2013

I had radiation for recurrence 2 years ago and am now back at <0.1. The radiation did make the oral drugs ineffective so I now use a Trimix which we just raised the strength. It is about 80% successful. I wear 2 pads/24 hours otherwise all is well.

UPDATED

September 2014

10 years following laproscopic prostatectomy and 3 years following Varian radiation (38 sessions) PSA now <0.1.

Wear 2 pads/24 hrs day for slight drip

Use Trimix shots for ed, following the radiation Levitra stopped working. This is not uncommon.

UPDATED

November 2015

Since radiation treatment 4 years ago (52 sessions) I have been 0.

Did make ED worse so use shots for recreation now.

UPDATED

January 2018

Had the laparoscopic surgery 2005. PSA went up again and 5 yrs ago and had 50 sessions of radiation. Now blood in urine and urologist has suggested I jump into the hyperbaric chamber. I am a professional so know know all about that as am a dental surgeon.

Anyone else who has had this problem and other solutions other than the hyperbaric O2 let me know.

Thanks

UPDATED

February 2019

I had 52 sessions of radiation 5 yrs after my lap prostatectomy for recurrent cancer. However last year I started bleeding through urethra. My urologist did a scoping and told me I had radiation cystitis. I looked it up on a medical database as I am a professional. Turns out that about 10% of people who have radiation end up with radiation cystitis. I was then treated with 70 sessions 2 hrs each of hyperbaric oxygen. Most people only need 40. It cleared it up, but I did have one bleed 6 weeks ago and has not returned.

Some day I will write a book called "Prostate Cancer Treatment: Nothing Can Go Wrong, Nothing Can Go Wrong!

UPDATED

April 2019

I had 52 sessions of radiation at 5 yrs post prostatectomy (laparoscopic). 5 years later, last year, I developed blood in urine. It was diagnosed as hemorrhagic cystitis by cystoscope. I then had 70 sessions of hyperbaric oxygen treatment (02 chamber like used by divers to prevent bends). However I started bleeding again 3 weeks ago. My urologist told me to drink lots of water and do not strain during bowel movements, etc. Only other option which I am not doing as having a flush in hospital through a tube.

UPDATED

June 2020

I had 52 sessions of radiation at 4 5 years. This induced hemorraghic cystitis (bleeding bladder). Then I had 70 sessions of hyrperbaric oxygend 2 years ago. Since then I am fine.

I had a kidney carcinoma removed by urologogist robotically and am fine now, I think.

Bill's e-mail address is: braneburt AT comcast.net (replace "AT" with "@")


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