YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Mike C and Terri live in Canada. He was 53 when he was diagnosed on Aug 18, 2008. His initial PSA was 4.6 ng/ml, his Gleason Score was 3+3 and he was staged T2a . His choice of treatment was Surgery. Here is his story.

(I will pattern my story after Bill T. (Texas) because I found his level of detail to be extremely helpful, and because my wife always tells people "If you ask Mike the time, he will tell you how a clock works!"). Thanks Bill, I hope my story unfolds as yours did.

My annual check-up was in March of 2008. Usual DRE (Digital Rectal Examination) and PSA checks were done and a follow up appointment in April to talk about the 0.3 change in PSA level from the previous year (3.9 to 4.2). The doctor recommended a second PSA test (I had read all the "press" on the inaccuracy of PSA tests, so I wasn't overly concerned). This next PSA test, one which I had not heard of, separates total PSA from free PSA.**1 The test revealed that my PSA level was now 4.6. The doctor scheduled me for another appointment to tell me that for my age the PSA suggested 75% no cancer, 25% cancer. He also gave me comfort that he had never seen a patient with a "normal" prostate that the PSA alone had detected cancer. However, to be safe, he scheduled me for a visit to the Prostate Cancer Clinic in July (4 month delay, but we were off to Europe for a month, and I had 2 warm water fly fishing trips planned so the delay "worked well").

I met with a Urologist on July 7. His DRE worked me over a little more aggressively than my family physician and he immediately found a lump. How could that be, when my family Doctor had found nothing? So, the dreaded Biopsy was scheduled for July 17.

I showed up for the Biopsy thinking the worst. I had flushed my system and drank the required amount of water. Then, the waiting. I had to "relieve myself" 2 times prior to the abdominal ultrasound! (For as long as I can remember, I have had to get up at least once a night to empty my bladder). Once the ultrasound was done off to the toilet again before the actual biopsy. The biopsy involved freezing and the extraction of 10 "cores". Once you got over the initial sound of the "nail gun" going off back there (the first one actually made me jump) the procedure was fine. The after effects are a different story, blood in the urine for a few weeks, and I am still experiencing blood in my ejaculate. Not painful, but distressing.

On July 31 my wife of 32 years received the call that the results were in and that I had an appointment on August 18. We were off on another fly fishing weekend, so she debated about telling me until the weekend was over, but she did let me know on the truck ride; it was a quiet ride. OK, so a 19 day delay means what? I check the internet and can't find any information on a hopeful outcome (long delay = no cancer), as hard and as long as I try, so I will have to wait. I have NEARLY convinced myself that it has got to be good news.

So, lots of very good days fly fishing later (great distraction by the way) August 18 arrives. The Doctor (a surgeon) greets me with the news of cancer. I was alert enough to have an open discussion. Lots of questions, lots of answers and he tells me about some information sessions with various specialists because my cancer is slow moving and all options for treatment are open to me. He sends me away to make a decision. So, I contact family members and begin to spread the news. I have sought out friends to hear their stories, and have made new "friends" who have been down our road. I have "decided" (I think) on surgery, but I am still in a data collection stage. I desperately want one more warm water fly fishing trip, as a "whole" person, (the Bahamas was great last year), so I hope the surgery can be delayed.

The health system in Canada can be great, but access to doctors is a major problem. I now can't get mine to return calls, so I may have to just schedule myself in without any more personal answers. I will try and update often.
And so my journey begins...........

Later: Mike says:

Could you move my story to Undecided ? Until I process the latest research, I am getting splinters from the fence I am sitting on right now.

Mike

 

UPDATED

October 2008

 

 

Sept. 17 (One month from diagnosis) Like all on the board, I have been busy researching PCa on the internet as well as directly talking to many survivors, guys who have had all the major treatments, with the exception of HIFU. I have even talked with one fellow who had surgery to find out that his pathology report came back negative for cancer, unbelievable!**2

I have re-met with my family doctor which left me feeling that my understanding of the various treatments exceeded his; certainly not what I was hoping for. Yesterday, I was able to meet with the surgeon again and asked for a second opinion on my slides.

I am now feeling more comfortable with surgery, if needed, after this second meeting. I am also having a report of top US Robotic surgeons**3 generated by The Health Resource in case I decide to opt for the da Vinci surgery which is not available locally.

Take care, Mike

Later: During my research, I had the opportunity to talk with guys who had experienced all of the treatments, including one individual who had his prostate removed only to find out he did not have cancer after all. I did request a second opinion on my slides, and I received a "verbal" that it was as reported. (Don't get me started with that fight!)

So, I have booked myself for the da Vinci laparoscopic surgery in Seattle on November 26th (thanks to Ken, Chris, Bob, Scott & Scott for taking the time to write and offer information and support).

I have gone down the long road of doctor and clinic visits (11 total), and as I traveled this path it became clearer and clearer that my choice, one which I was forced into making because of the news I received on August 18th, was the correct one. As a Canadian heading to the U.S. for surgery, the questions asked in every one of those visits frustrated me and made me re-assess and question my decision, but I am here, comfortable, and ready to go! For some Canadians struggling with the decision of heading south for treatment, this is a costly, but viable option.

Remember, you only have one shot at the surgery!

Wish me luck, Mike.

 

UPDATED

December 2008

 

 

We flew to Seattle on Nov 24th and met with Dr. James Porter on Nov 25th. We were impressed by his sense of calm and he exuded a comforting level of confidence (he is a prostate cancer survivor as well; and a da Vinci patient). He has performed ~ 750 of these robotic procedures. The remainder of the day was spent doing lab work and the pre-op bowel preps.

We walked to the hospital for the surgery at 5:30 am the morning of Nov. 26th, where I met the rest of the team who would be in the operation room and kissed my wife goodbye at about 7:30 am. I was wheeled into a very cold operating room, the anesthesiologist told us some corny joke about how to circumcise a whale (4 skin divers, was the punch line) and I was off "bonefishing in Belize".

I awoke at about noon, groggy but somewhat alert......my first impulse was to check to make sure that there were 5 incisions, and not just the one (Yes, they had been able to use the Robotics, no power failures, computer malfunctions, reasons to defer the surgery, etc. etc. the procedure had gone ahead as planned!). I must have drifted off again because when I awoke, I was in my hospital room. Remarkably I was absolutely pain-free, I remember asking the nurse if there was pain medication in my drip and the answer "Was no, do you need some?". I was given a private, very quiet, room in the Swedish Medical Centre.

My wife made her way up to the room soon afterwards with a Koala Bear toy attached to a metre-long fish balloon (a signal that a fishing trip to New Zealand is in order for Jan. 2010). It turns out my wife had been given hourly updates from the nurse in the O.R. and she was well aware of everything that had gone on, including the fixing of an inguinal hernia (bonus!) and the fact that I had lost only a "shot glass" of blood, which explains why there was no drain tube in my belly. I drifted in and out of sleep and she excused herself at about 5pm to return to the hotel where she went to work updating family and friends. Turns out my cancer was larger than expected and only 1 nerve bundle was spared, so we will have some challenges ahead of us.

Remarkably, we walked the 5 blocks back to the hotel the next day 24 hours after surgery (in my PJ's, carrying my catheter bag). Unbelievably I took no pain medications at all. We did get the prescription filled, but none were used, although I did take the odd Advil.

The next couple of days I did my walking up and down the hall at the hotel and on Dec 1 we finally ventured downtown Seattle for several 2-3 hour walks.

On Dec 8th we re-met with Dr. Porter for the pathology report and catheter removal. The catheter removal was absolutely a non-event I watched it coming out, and felt no sensation at all. The pathology results came back with a Gleason grade change from 3+3 to 3+4 and staging from T2a to T2c, but the big news was that the cancer was organ-contained. The tumour size was 3.5 gms, which Dr. Porter said was medium to large in size. This news was such a huge relief for us because as I had mentioned removing a nerve bundle means the cancer is close to the prostate margin. My lymph nodes were also removed and the biopsy was also negative for cancer.

So as I sit today I am 2 weeks out from surgery, and as you can tell I am absolutely sold on the da Vinci method. It is early days for the side effects, and obviously incontinence is a problem right now, but it is only day 3 from catheter removal and I am seeing improvements already.

A big thanks to Terry and all others who have taken the time to write over these past 4 months, with your help I made the right choice and life now can move forward, once again.

Take care, Mike .

Mike's e-mail address is: westslope@gmail.com

**1 What Mike is referring to here is what is known as the freePSA (fPSA) test. It is described briefly in PSA 101 [back]

**2 Dave Martinez was luckier - this happens more often than is admitted[back]

**3 John Chandler and Chuck Maack say that they maintain lists of the best surgeons - see RESOURCES - page down [back]