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Ed Julius and Chris live in Connecticut, USA. He was 58 when he was diagnosed in May, 2008. His initial PSA was 8.30 ng/ml, his Gleason Score was 8, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

First, thanks to all who have posted here and to those that sponsor this site. The information has been very helpful.

I have had routine physicals for years following a round of colon cancer 11 years ago (surgery and chemo, considered cured). The PSA had been at the level of 0.9 for years but in April of this year it came back at 10.5. I was given antibiotics and after a week another PSA test was given with a reading 10.9. So in the course of 12 months it went from 0.9 to 10.9. Negative DRE (Digital Rectal Examination) from the GP. An appointment was made with the urologist.

At this point I got onto the Internet and found this site as well as others. Based upon what I read I decided to have another PSA test taken without having a DRE immediately before as had been done with the preceding two. This one came back at 8.74. I would recommend that others have their PSA taken prior to a DRE as a change of a couple of points might influence the treatment decision in some cases. An interesting point as this action was not recommended by any of the doctors that I have seen.

The urologist performed a DRE and felt nothing. We set up an appointment for a biopsy two weeks later. The biopsy was taken with 12 cores with three of six being positive on one side with between 42% and 90% involvement and one of six on the other side with 2% involvement. Gleason score was 4+4=8. Prostate was small at 21cc.

The urologist met with my wife and myself, went over options and recommended surgery.

I now got into gear and spent a lot of time researching the various options.

I became interested in proton treatment so I called around. Loma Linda was backed up for months, the M.D. Anderson and Mass. General facilities would not treat Gleason 8. MPRI (Midwest Proton Radiotherapy Institute ) said they would consider it and I made a trip to Indiana for an interview. DRE with the doctor and one for the resident. Bottom line was that they would treat the prostate with protons but that conventional radiation at another facility would be required for the surrounding area. This somewhat diminished the appeal of this treatment for me.

In the interim the urologist arranged a meeting with Dr. Peschel, a radiologist from Yale. Another DRE for the doctor and one for the resident. He surprisingly recommended surgery based on my age primarily but also said that radiation was a reasonable choice.

At this point I was spending a lot of time on the internet to the point that I was told that I was obsessive about it. Given my unfavorable Gleason score and conflicting treatment advice I felt compelled to dig in and get the best information that I could.

One thing that I picked up on was that the treatment recommendations were based largely upon the Gleason score. The samples had been sent to a lab where some unknown person assigned a number to them. That seemed unwise to base so much on one review so I had the slides sent to John Hopkins for a review hoping for a shift in the numbers. Watch what you wish for! The Gleason score they assigned was 4+5=9 with "perineural invasion identified".

I was now firmly in high risk territory without a clear plan or at least without a plan that didn't change several times a day.

Up to this point I was making decisions on the fly and reacting to additional information as it became available. I found that Mass. General Hospital uses a team approach with an oncologist, a surgeon and a radiologist meeting with you in the same room at the same time. I met with them on June 4 and they said it they needed the results from a endorectal MRI and a bone scan before making a recommendation. They very promptly arranged both scans on June 8 and I meet with then on June 11 to discuss the results.

UPDATED

July 2008

Since the last report I went to Mass. General Hospital for a consultation. They promptly performed a bone scan and an MRI. Fortunately, both came back negative. They also reviewed the pathology slides and gave me a Gleason 4+5=9, agreeing with John Hopkins.

Their recommendations were, again, evenly split between surgery and radiation. I was torn between the two treatment options. I decided on radiation but changed my mind. I met with Dr. Wagner, a surgeon at Hartford Hospital. He has extensive experience with both conventional and robotic prostate surgery and has a good reputation. I then elected to go with the surgery which will be performed on July 25.

In the end it was a toss up between surgery and radiation with different sets of side effects to choose from. Given my age I thought that I would accept the bulk of the side effects up front with surgery with a reasonable chance of a quick recovery. I liked the idea of the quicker feedback on the PSA level that surgery provides.

UPDATED

August 2008

Underwent Da Vinci robotic surgery at 11:30 AM on July 25, 2008. Rolled into the operating room, met Dr. Wagner and team and woke up 4 hours later. Had to wait in recovery for 5 hours as they did not have adequate staff to wheel me to my room when I was ready after 2 hours.

Dr. Wagner said that things went well. Saved one nerve bundle and there were no obvious signs that the capsule had been penetrated.

Textbook recovery with a return home 24 hours after leaving the operating room. A little sore when moving around and a low level of pain when just resting. Stopped pain medication after first day home. Ate rather conservatively with modest amounts of easily digestible food. After 1 week was eating a regular diet without restriction. Walked everyday and took naps everyday.

August 1 Update All is going very well after one week. Pain level is low even when moving around. Sleeping very well at night with the afternoons being perfect for a nap in the hammock. Living with the catheter OK but will not miss it when it is removed next Tuesday morning.

August 2 Pathology Report Mixed bag here. Dr. Wagner called today with results. Negative margins, no lymph node involvement, positive seminal vesicles, no capsular penetration, 25% involvement and Gleason changed from 4+5 to 5+4. He recommends no additional treatment at this time,

Trying to decide whether to be a half-full or half-empty type of person. I would have been in much better shape statistically without positive seminal vesicles but it could also have been much worse. The best that I can tell this all resolves into roughly a 1 in 2 chance of being cured which is about where the Partin Tables put me before surgery. Looks like I will be following PSA scores with a great deal of interest for the next few years.

I will be looking into doing whatever makes sense to improve my odds. That includes changes in diet, exercise, clinical trials or whatever.

UPDATED

November 2008

Overall a great recovery from surgery. I highly recommend Dr. Wagner and his staff at the Hartford Hospital.

I have had two PSA tests since surgery and both have come back undetectable so that is good. Urinary control has been very good since soon after the surgery. On the ED front it looks like my one nerve bundle is not getting the job done with or without Viagra.

Biggest change in my status is that in my last report I said that there was no capsular penetration based on a verbal report. Upon receiving the written report I found that there actually had been capsular penetration on both sides. This drove my chances of being cured from about 1 in 2 to about 1 in 4. Not liking these odds I looked into what could be done to improve my chances.

Some studies have shown that 6 months of ADT plus radiation treatment can drive the odds back up into the 1 in 2 range. I am going to go this route plus I am going to have some chemo after the radiation. The use of chemo after the other treatments is in the clinical trial stage and the advantages are unknown at this point. Given my high Gleason Score I figured that I would give it my best shot up front and hope for the best.

UPDATED

February 2009

I had my last dose of radiation on Feb. 4. There were a total of 40 treatments with 25 to the pelvis for the lymph nodes and 15 to the prostate bed. Overall it was not too bad. Some fatigue later in the treatment, irritated skin on my backside and a real sense of urgency on bowel movements (as in you have 30 seconds to get where you are going). The worst part was that the treatment irritated some hemorrhoids which did cause some absolutely eye popping pain on a couple of occasions. I followed directions with a high protein, low fiber diet and that really helped.

Two weeks after treatment and things are back to normal and I am feeling great. I had my last 3 month Eligard injection last week and I now have 2 weeks to go until I start chemo with Taxotere (Docetaxol).

My oncologist agreed to help me emulate an ongoing clinical trial RTOG 0621 Adjuvant 3DCRT/IMRT In Combination With Androgen Suppression and Docetaxel For High Risk Prostate Cancer Patients Post-Prostatectomy: A Phase II Trial. This consists of 6 doses of Taxotere spaced 3 weeks apart. I would be interested in hearing about the experiences of others with this chemo and any helpful hints you may have that might help.

Thanks.

UPDATED

July 2010

As I am approaching the second anniversary of my first treatment I thought that this was a good time to update my story.

Shortly after my last update I underwent chemo with 6 doses of Taxotere at 3 week intervals. I had the typical side effects of fatigue, hair loss and some neuropathy in my feet. The worst part to me was the steroids given the day before, of and after the treatment. These got me so jacked up that I went three days without sleeping. I discussed this with the doctor and he decided that I would only received them the day of the Taxotere treatment. This was much better and I would recommend this approach to others if their doctor agrees with it.

I have had several PSA tests since the last treatment and after two years they have all come back ZERO! I know that I am not out of the woods yet but this is very encouraging. I have bounced back and am feeling very well.

The long term side effects of all of these treatments are a slight bit of neuropathy in my toes, a little roll of fat around the middle and ED. I have tried Viagra with no effect but have not tried any of the other options.

UPDATED

December 2011

PSA is still zero and I am hoping that it will stay there in spite of a high Gleason score!

UPDATED

March 2013

Closing in on five years after initial diagnosis, Gleason 9 and aggressive treatment. PSA level remains undetectable. Wondering if it is safe to exhale yet.

UPDATED

May 2014

It has now been a full six years since my diagnosis. PSA is still tracking as non-detectable, for which I am grateful. Started with a poor prognosis and went after it very aggressively and I am satisfied with the approach taken and the results to date.

UPDATED

July 2015

It has now been more than seven years since my diagnosis. I took a very aggressive approach towards the treatment, electing for for hormone, radiation and chemo treatments shortly after surgery as opposed to waiting for a recurrence. I did this because of the statistically poor outcomes for individuals with Gleason scores of 8 to 10 (I had a 9).

My thought was to hit the disease as hard as possible immediately after surgery while the number of cancer cells remaining in my body was relatively small and undetectable. The usual course at the time was to reserve some of the treatments as a backup for when there was a measurable PSA above some number.

My PSA has been zero since the surgery and for this I am thankful. I will never know if I was over-treated and would have had a zero PSA level if I had skipped the additional treatments and their side effects. I am, however, very pleased with the outcome and would elect for an aggressive treatment again if faced with the same Gleason and PSA scores. I would also look into any advances in treatments that had been made since my diagnosis.

UPDATED

May 2016

Happy to report that PSA is still zero.

Ed's e-mail address is: ejulius@snet.net


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