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Ron Cooper and Pam live in California, USA. He was 62 when he was diagnosed on October 30, 2008. His initial PSA was 13.1 ng/ml, his Gleason Score was 7 and although he says he was staged T2c, this seems to be his pathological staging: his clinical staging appears to have been T1c. His choice of treatment was Surgery - open radical retro-pubic prostatectomy. Here is his story.

After 10 years of not seeing a doctor, feeling like I was in great shape for a man my age, an excruciating headache forced me to seek medical attention. The headache, as it turns out, has been one of the biggest blessings in my life.

The headache was caused by a "large lobulated cystic lesion" in my right sphenoid sinus cavity and has since been surgically removed. However, along the way to diagnosing the source of my headache, I was also given a complete physical examination - including my first PSA test at the age of 62.

My first PSA score was 15 - the subsequent re-test was 13.1 and that led to a biopsy which revealed 13 of the 14 core samples to be positive for cancer. The diagnosis, based upon the biopsy results, came on Halloween Day - Oct. 30, 2008. I was immediately referred to a Urological Surgeon at the Veteran's Hospital in West Los Angeles for a consultation.

I started reading everything I could find that pertained to the treatment of prostate cancer - acquiring as much knowledge as I possibly could in order to make the best decision regarding how I would proceed. This website was especially helpful!

I elected to have an "open radical retro-pubic prostatectomy" and, as of this writing, it would appear that I made the correct choice.

The surgery was performed 6 days ago - Dec. 3, 2008 - and I am still wearing a Foley catheter. I met with my surgeon yesterday and my JP (Jackson/Pratt) drainage tube was removed. The pathology report indicated that although a small section of Grade 5 cancer was detected (most were Grade 3), it was still contained within the prostate gland and that the lymph nodes which were harvested during the surgery were all negative for cancer. A bone scan prior to the surgery revealed no metastasis, either.

Whew! It appears that all of the cancer was removed during the surgery and now, aside from having my catheter removed in 4 days, I will await my first post-surgical PSA test in 6 weeks.

Despite the fear and doubt that preceded the surgery, I can now say that I am glad I elected to have the open surgery and, with the vision of 20/20 hindsight and the post-surgical pathology report, it would appear that any delay may have proven to be quite costly.

Had I not had the headache my cancer would have gone undetected, for there were no symptoms. Hence, I regard that horrific headache as one of the biggest blessings in my life. I will add more to my story as I progress through the recovery.

 

UPDATED

February 2009

 

 

At eight weeks post surgery I just received the results from my first PSA test - 0.03 - Yay!

Opting for the open radical procedure was a stressful decision. Hindsight being 20/20, in light of the post-op biopsy results of my prostate gland (I had a section of grade 5 cancer), I feel comfortable that I made the right choice. My margins were good and there was no metastasis. Bone scan was clear as were the lymph nodes.

These last two months have had their ups and downs. I was only in the hospital for two days - in on Wednesday and out on Friday. The abdominal pain was only severe for a few days, and then only when I was moving about. I wore a foley catheter for the first 10 days and, save for some minor irritation, that was not so bad.

The JP (Jackson - Pratt) drainage tube came out a few days before the catheter and the only real complication I experienced was a continued drainage of serous fluid toward the top and through my incision. A small seroma developed and had to be lanced at about 4 weeks post-op. That has since healed nicely.

Although I was expecting some degree of incontinence nothing could have prepared me for the reality of not being able to control myself. I remember the first day after my cath was removed - taking a shower, drying off and squirting. The harder I tried to control it the more I seemed to lose control. I felt like crying. It was psychologically devastating!

The first 4 weeks required that I wear a diaper even though I wasn't completely incontinent. It just gave me a greater sense of security. There was never a point, save for the first 3 or 4 days, where I wasn't going out and interacting with people. Even if it was just to walk to a local sandwich shop for lunch. That includes while I was wearing the catheter - I would simply use the smaller 'sports bag,' as I called it.

Now, at two months post-op, I wear a pad during the day when I'm out in public and nothing at night. My incontinence is almost virtually non-existent. I am very pleased and happy about that!

My Urologist had prescribed a vacuum pump to stimulate blood flow to my penis and to also stretch the urethra, which was severed and re-attached during the surgery. It could just be my imagination but I attribute the rapid regaining of continence to the use of this device. In addition, of course, to Kegel exercises.

The nerves that are responsible for erections were not spared during my surgery. I was told in advance that they would not be - spared, that is. I have no problem with that. I was, after all, trying to save my life and not my ego. The vacuum system that was prescribed allows me to pump up and then clamp-off (for lack of a better term) via an elastic band. By doing this I can maintain a full erection for up to 30 minutes before having to remove the band. It proves to be quite adequate for penetration, although I will admit that there is a considerable loss of sensitivity. Then, there is also the psychological aspect regarding the retrograde ejaculation - The orgasm is still a wonderful feeling, just different.

All in all I am very pleased with the progress I am making, especially this soon after such an invasive procedure. I am healing quite nicely and making adjustments daily. With today's PSA results I am encouraged that I will enjoy quite a few more days north of the grass. And, while the diagnosis of prostate cancer can be quite frightening - not to mention the confusion as to what might be the best treatment, I am very grateful that I chose the open surgery and attended to it as soon as it was diagnosed.

Onward and Upward!

 

UPDATED

June 2009

 

 

At 6 months post-op my PSA remains low and I am fully continent. I have been dealing with a number of other non related physical difficulties in the past few months and the prostate cancer, or thoughts thereof, have really taken a back seat--which I guess is a blessing?

I had my MUSE trial yesterday where I was instructed on how to use the urethral suppository. MUSE (alprostadil) is a medicated pellet that is placed in the urinary opening using a disposable plastic applicator and is used to treat erectile dysfunction.

The trial involved a rather low dose and was designed primarily to be instructive--also to see how well the medication is tolerated. There was some burning in the urethra--not too bad--as well as some aching. I was told that the burning usually occurs during the first few administrations and generally subsides with continued use. For the aching I was given some lidocaine jelly to apply to the applicator in future usage. I was told that would eliminate the aching--we'll see?

Hopefully the dose (500mcg) I was prescribed will achieve a better result than the one yesterday during the low-dose trial?

So, that's basically where I am today with my prostate cancer--continuing to monitor PSA's and working to find a viable treatment to overcome the loss of erectile function...which, I should hasten to add, is really of little concern in the broader scheme of things. Like I said, I am dealing with other non related issues upon which I place a far greater priority. I feel blessed that my prostate cancer was detected and dealt with--that I have fully regained continence--and now I will attempt to hurdle the new obstacles that have been placed before me.

Onward and upward!

 

UPDATED

September 2009

 

 

At 9 months post-op my PSA remains low -- currently .02 as of last week. It has gone as high as .05 since my surgery, so this latest result is a tremendous relief for me.

I am pleased to say that I am 99.9% continent with only an occasional drop of slippage, usually late in the evening when I am tired.

My urologist and I continue to explore a pharmacological way to overcome my post surgical erectile dysfunction.

Previously, I had mentioned the 500mcg. of Alprostadil (MUSE), a urethral suppository. That dose was insufficient to produce an erection suitable for intercourse. I am now trying the same medication in the 1000mcg. strength. I have only used it once (last night) and it did seemed to work somewhat better -- however it was still not completely satisfactory.

Having just met with my urological team last week, I was told the next step would be the Alprostadil injectable -- an injection administered into the side of the penis.

However, since I am in the Veterans Administration healthcare system, I will have to continue using the current dose of the urethral suppository for the next 3 months in order to satisfy their pharmaceutical protocol prior to being prescribed the injectable version of this medication.

No worries -- I can wait.

Other than the concerns that I have described above, thoughts of my PC seems to be fading rapidly as other physical afflictions move to the forefront. I am scheduled for my second lumbar epidural on October 2 -- which is to, hopefully, alleviate the pain in my lower back.

I have osteoarthritis (degenerative joint disease) that has caused a deterioration of the disks in my lower back (L4, L5, S1). I had the first injection (epidural) on May 1st of this year and I only realized 5 days of moderate relief. I am keeping my fingers crossed that this next injection will achieve a greater, longer lasting result which will serve to temporarily forestall the inevitable spinal fusion that has my orthopedic surgeon salivating over the prospect of doing.

The above condition is not related to my Prostate Cancer but rather to the ongoing journey of life. It serves as a good reminder that I should not worry too much about my problems today, as there will always be another problem -- oftentimes bigger -- that will be lurking around that next corner.

I have learned to define these problems and immediately get into the solution. That is what I did with my PC, this is what I am doing with my back problem.

The journey continues -- Onward and Upward!

Ron's e-mail address is: sweetdaddyroses@gmail.com