October 2007 - Elevated PSA
After having a PSA of 0.5 ng/mL for years, my PSA jumped to 3.6 ng/mL. Initially my primary care physician did not comment on the increase, because 3.6 is within the normal range of 0.0. to 4.0 ng/mL. However I reminded him of my previous readings and he suggested I meet with a urologist.
Advice - you are an important participant in your care. Understand what is going on and don't be afraid to ask questions. Had I not, then the elevated PSA would have been missed for a year… or more. Good PSA article here. [Some of the practical aspects of the PSA test are covered in PSA 101]
November 2007 to October 2008 - Monitoring my PSA
I had an exam with a local urologist who noted that other than the elevated PSA, my prostate (via DRE) and related symptoms (frequency and flow of urination) were normal.
We agreed we should retest the PSA a couple more times of the coming 6-9 months. My PSA remained relatively elevated at 2.6 and 3.0.
My urologist strongly recommended I have biopsy performed. He explained that views on "normal" PSA readings are changing and becoming more nuanced, and that for a man of may age (52 at the time), I should not be over 2.5 ng/mL. [Paul's note is not too clear here as his PSA would seem to be within the 'normal' range of the table he posts. The table itself, first published soon after the introduction of PSA testing is somewhat contentious with some leading practitioners rejecting the concept.] This was covered in a recent Harvard Men's Health Watch report (good journal for general men's health).
Proposed normal PSA range
(Harvard Men's Health 7/09)
0 - 2.5 ng/mL
0 - 3.5 ng/mL
0 - 4.5 ng/mL
0 - 6.5 ng/mL
November 7, 2008 (4:00 pm) - Prostate Biopsy
The anxiety, waiting, and thinking about this procedure were worse than the procedure itself. While I would not look forward to doing it again, it was not that bad.
The procedure was done in the urologist's office and took about 30 minutes. There was some discomfort from the ultrasound probe (was sort of like a 15 minute DRE). The biopsy itself was performed after local anesthetic is applied, and took about one to two minutes. It stung, but was not bad.
After the procedure I was a bit sore and felt a bit bloated. I urinated right after the procedure without difficultly (but with a good amount of blood in my urine). It was about four hours before I urinated again.
November 8, 2008 (3:00 pm) - Sepsis
I went home from the biopsy feeling pretty good, attending my son's senior concert that night. I was up the next morning feeling good, did some projects around the house, had lunch with my wife, etc.
By about 1:00 pm I was feeling a bit like I had a cold and lied down to nap.
By about 2:00 I was feverish and shivering, but still thinking "it's just a cold."
By 3:00 I was shaking uncontrollability, fainted, and my wife called 911. I was taken by ambulance to the local hospital.
At the local hospital I had a fever of 106.10, blood pressure of 62 over 40, liver function decline, kidney function decline, and an extremely high white blood count.
After five days in the ICU and four days in recovery, I was allowed home. I returned to work the next week. I learned later I was hours from dying. Thank God for North Shore Medical Center!
This is a VERY RARE occurrence!!! You should not avoid a biopsy because of this.
My advice however, is to really listen to doctor after the biopsy. [It is also important to listen to your doctor before the procedure and to ensure that you take the anti-biotic provided in accordance with instructions.] Be very sure you understand what to expect (when to urinate, who to call, etc) and take any signs of fever/chills very seriously. The old adage "better safe than sorry" really applies!
January 2009 - Biopsy Results
My initial biopsy report came back with 11 cores clean and one core "atypia" meaning they could not be sure if there was cancer. Normally, a second biopsy would be done, but in my case, this was not recommended.
A second opinion was provided by Dr. Jonathan Epstein of John Hopkins with the following results:
Small focus of adenocarcinoma of the prostate
Gleason grade 3+3 = 6
Only in one core
Less than 5% of the core contained cancer
Agreement that I was stage T1C [It appears from what Paul has to say here that he had what is referred to as an "insignificant" tumour as being: (1) Nonpalpable (2) Stage T1c (3) Percent free PSA 15 or greater (4) Gleason less than 7 (5) Less than three needle cores with none greater than 50% tumour. One of the options for such a diagnosis is Active Surveillance however Paul's doctors did not recommend this option due to his sepsis experience.]
Although I was preparing myself for the worst, actually getting this news was pretty depressing. After a few days of thinking, my attitude to changed to more "I am in control of this. I will work actively to treat it. If I can survive sepsis, I will survive this"
February to March 2009 - Researching Treatment
This was an odd experience. There are many different treatment options, and I was encouraged to research them all and basically make up my own mind on a treatment approach. Normally, I am waiting for the doctor to recommend treatment.
I'll spare you all the details and jump right to some advice and learning's.
My urologist recommended a great book - get it - read it - refer to it. It's "A Guide to Surviving Prostate Cancer" by Dr. Patrick Walsh. It's under $15 at Amazon.com. Dr Walsh is a great believer in open prostatectomy, so I felt he was a bit biased in this direction. Also some of the statistics are a little old (2007). But still it's a GREAT book. [Another excellent book, perhaps less biased than the Walsh book is A Primer on Prostate Cancer - The Empowered Patient's Guide]
Dr Walsh gives some very good advice on selecting a treatment, and even more importantly, selecting a doctor. See the questions I used at the end of this posting. [There is another, longer set of questions at Interviews With Your Doctors on the Yana site]
There are lots of good websites to check out. Even if you are not in the Boston area, check out the Mass General, Dana-Farber, and Lahey Clinic sites.
You'll want to meet with different doctors who specialize in cancer treatment and/or prostate cancer treatment. In my case I met with a medical oncologist, radiation oncologist, and surgeon at Dana-Farber/Brigham's and Women's Hospital in Boston. I also met a surgeon at Lahey Clinic. They were all great - listening, educating, and generally being very supportive. They eventually guided me toward surgery.
Be prepared for this to be more work than you anticipate. Its always on your mind, you need to set up appointments, phone calls, etc.
After meeting with two doctors and a discussion with a third, I decided on a robotic prostatectomy. From all I read and heard, it's a good choice for men with early stage and contained prostate cancer.
I selected Dr James Hu of Dana-Farber/Brigham's and Women's Hospital, based on his reputation, extensive experience, the hospitals reputation, and his general demeanor.
In my case, I did not tell anyone at work until I had decided on a treatment approach and timing. Once I went public, I was pretty open about my situation, which reduces (at least in my opinion) the office drama. My company was very supportive.
June 2009 - Robotic Prostatectomy
Overall, the procedure went very well. The operation was done by Dr Hu at the Faulkner facility of DF/BW. The staff was supportive and attentive.
You can probably read all this on hospital web sites, [The Choosing A Treatment section of the Yana site has under the Surgery sections a series of links with suggestions of what items might be required, hints on handling a catheter etc, based on the individual experiences of men who have been throuhg this treatment] but here is my experience:
Weeks before operation: get weight in order, exercise regularly
Day before operation: must do bowel prep and cannot eat.
Day of operation preparation: on a bed, in a Johnny, with my wife, vitals checked, given intravenous fluids
Operation: wheeled into a large very brightly lit operating room with tons of equipment. Room was all white except for the operating table which was red. That's all I remember.
Post operation: about three hours until I wake up in my room and a bit groggy.
o Feels like I've done hundreds of sit ups
o Really, really thirsty
o Catheter now in place (no news to me as I had when I had the sepsis)
o Overall, feeling tired, but okay.
I stayed one night at the hospital. Got instructions on catheter care, what to eat, not to lift things, etc and went home.
June 2009 - Post Operation with Catheter
A catheter sounds awful, but in fact it's not too bad. A bit annoying a times but nothing terrible. Pay attention to your doctors "catheter care" instructions, they really do help. [It may also be helpful to read Me And My Catheter]
My son was a bit jealous that I could sit and watch the ball game, have a beer or two and NOT need to get up to pee!
I was pretty active, walking a few miles a day (with a leg bag). Showering was fine and in fact refreshing. I could do some light work at the computer, pay bills, etc.
I did have some blood in my urine, mostly after walking for a while. By about the seventh day, this was over.
The worst part of this time was the bloated/need to poop feeling. On the third day post-op I passed gas - for the first time. On the fourth day post-op I finally had a bowel movement, and felt a lot better with less bloating.
During this time, I found I was quite tired by about 9:00 pm and slept most nights for 11-12 hours.
I was eating soft foods, as recommended. Keep up with your stool softeners and fluids!
My abdomen continued to be stiff but improved slowly during this time. I only needed ibuprofen (600 mg) a few times for pain in the first two days.
Malecare.com has some good reader generated information about clothing, exercise, etc during this time.
Keep a daily diary of what you drink, what you eat, how you feel, pills you take, etc. It helped me communicate with the doctor and ensure I was following their instructions.
Overall, I felt pretty good during this time.
June and July 2009 -Catheter Removal, Pathology Report, PSA Report, and First Five Weeks Post-op
Finally, the catheter could come out! You'll read about the voiding procedure, but I wanted to point out that it's not painful. The momentary mild sting of sliding out the catheter is WELL worth the fact that it's out! Things all seemed to be working, and I got my "diaper".
After voiding Dr Hu suggested I go have a coffee with my wife to make sure I could urinate okay.
I got the pathology report at this time as well. It showed that all cancer cells were contained in the prostate gland itself; the tumor was small (0.5 cm), low grade (Gleason grade 6: 3+3) with no invasion of surrounding areas, and margins free of tumor. I was feeling pretty good!
An hour after a Starbucks Tall Dark Roast, I felt the urge… fearing the worst I went to the men's room. To my surprise, urinating was pretty much as it had been before the operation.
Thanks to Dr Hu (and perhaps also my anatomy); I am one of the fortunate 5-10% that is not wearing any pads within about 5 days of catheter removal. I continue with Kegel exercises as proscribed by Dr Walsh (only while urinating). Once a week or so, there is drop or two of leakage when sneezing/coughing (this is five weeks post-op).
I have not had the same success with erections. Dr Hu has not recommended any specific penile rehabilitation, [See Use It Or Lose It for some suggestions in this regard] suggesting I give myself some time. Recently (operation plus five weeks) I have had a few soft nocturnal erections.
I started to work again four weeks post-op without any difficulties.
I started jogging and exercising again this week (operation plus 6 weeks).
My PSA reading taken at exactly four weeks after the operation was 0.1 ng/Ml. Good news - lets hope it continues.
Six weeks after the operation, I still have some very mild discomfort around the incisions, but it's almost gone. I also had some tenderness in groin at the base of my penis for a few days, but this has subsided.
As of now, I am feeling pretty good and remain very optimistic about beating this and getting back to my "normal" life.
I wish the best for anyone beginning or in the midst of this journey!
Just had my four month post-op checkup and all seems to be going fine.
- PSA was at 0.0
- Incontinence - none really, but very occasional and very minor leakage if I do not keep up with Kegels
- Erections - continued slow progress (but ahead of the curve according to my doctor) with occasional semi-hard nocturnal erections. Doctor perscribed 10mg Cialis which has made a difference (meaning normal intercourse a couple of times).
Overall, feeling well. As always feel free to write with questions.
PSA as of January 2011 still at 0.0
No incontinence at all
Very minor ED - erection is fine without Cialis, although a bit firmer with it.
Overall, feeling well Paul
Actually not too much to update (good I guess). [That's often the best kind of update!]
Still complete continence. PSA still at 0.0. Virtually no ED (no need any longer for Cialis).
Overall feeling pretty lucky and pretty good. Keep up the good work Terry!.
Questions: The questions below are those suggested by Paul. The site has a fuller set of suggested questions:
General sense of treatment options that are good fit for me? Any issues the sepsis history?
How many of the procedures are performed here per year (ideally over 60)
How many of the procedures have you performed over your career (ideally over 300)
How many on patients around my age
What percentage of your patients have positive margins (e.g. cancer cells at edge of removed prostate)
And what would "good" be?
Outcomes on your patients like me (early fifties, healthy, early cancer…)?
At one and at two years - still wearing a pad and sufficient erections
How do you track their long term progress (caution if "only if they call me") o How often do your patients require follow up radiation? " Special preparation for surgery?
Timing of the procedure - can it wait till summer? What's the earliest?
Approach to penile rehabilitation (for help with erections) Use of Viagra? See Use It Or Lose It
No news, which I guess is good news. Same PSA of late 2013 and no change in side effects (which basically non-existent).