(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. [What Mike is referring to here is what is known as the freePSA (fPSA) test. It is described briefly in PSA 101] 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.
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! [This happens more often than is admitted - see David Miller]
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 [John Chandler and Chuck Maack say that they maintain lists of the best surgeons - see RESOURCES - page down] generated by The Health Resource in case I decide to opt for the da Vinci surgery which is not available locally.
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.
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
I am now 7 weeks out from surgery (Nov 26, 2008) and life has returned to the pre-cancer normal. Incontinence disappeared at about 3 weeks, in fact I had read somewhere that using pads and diapers could become somewhat of a crutch if you weren't careful. With that, I went "cold turkey" and things are absolutely fine. ED is progressing faster than I had thought, and I did lose a nerve bundle. So, all things considered I am extremely pleased with how my world has unfolded.
I met with my GP last week to get my first post-surgery PSA test and informed him of my "sneaking across the border" to have the surgery (remember I am Canadian and my surgery was in Seattle). He was dumbfounded by my progress, since all of his patients have gone the regular surgery route and all have had a much tougher go of it. He vowed to me that he would educate himself on the da Vinci method. I am going to hold him to that at our next visit.
The best news since the pathology report came back clean, was that my PSA was < 0.02, or undetectable. I feel that I have dodged a second bullet in "life's Russian Roulette", and retirement now figures more prominently in my daily thoughts.
Although not necessary (I could get my GP to do it), my wife and I have booked a trip to Seattle to meet with Dr. Porter for his po st-op follow-up. We think this will be a chance to close this chapter of the story, not the book, just the story.
I have emailed many of the members here requesting information prior to the surgery as well as many of the new members to offer support. Once again thanks to all who have taken the time to update their stories in an ongoing basis, your time is much appreciated. Also a huge thanks to our significant others who have helped us along this often confusing path and our road to recovery; your help and love made our burden that much lighter.
Best to all on YANA, and to all dealing with PCa, may the future bring us all less worry and more smiles.
I received my 3 month PSA test results today............
ED issues are continuing to improve, and I am hopeful that I will return to full function.
I am taking at least a 2 month sabbatical from work to do some of the things that are more important in my life these days. Strangely, my having to deal with Prostate cancer has awoken me from my "midlife slumber" and re-focused us on the things we should have been concentrating on. There is absolutely no reason to wait for another wake up call. I'm sure everyone on YANA knows what I mean by this!
Once again to all dealing with PC take comfort that there is an end to the confusion and life, for most, does go on.
I am now 6 months out from surgery, and my latest PSA is, thankfully, still undetectable.
ED issues are still improving, and I am on the Cialis, 5mg, daily plan. The March visit with Dr. Porter was uneventful, other than a late Seattle snowstorm! His comment to me was "Mike, with your 2 undetectable PSA tests and the clean pathology you can stop looking over your shoulder." Comforting words from a very experienced surgeon.
So, life goes on and New Zealand and Australia awaits us in 2010. As a mentor, I have enjoyed helping those that have come behind us in this confusing path and feel that if I can offer a glimmer of hope to a few guys then my struggle with Prostate Cancer has been worthwhile.
Thanks again to all on YANA for continuing to update your stories and Terry for your efforts. I still "surf" in daily to see if I can help out.
At 9 months post-robotic surgery my latest PSA test continues to be < .02 or, undetectable.
My doctor has now told me to wait 6 months for my next PSA test.
ED is still showing signs of improvement, and incontinence has never been an issue for me.
I am feeling great and am looking forward to the next year off from work.
After a one year hiatus (the damn surgery got in the way!) we are off to the Bahamas, bonefishing, again this year. Then we have booked our trip "downunder" to bother some Brown trout. My goal for 2010 is to have a fly rod in my hand for over 100 days!
All the best to the veterans on YANA and best of luck to the newcomers..........you have come to the end of your search for answers, the information you seek is here in the survivors stories.
I am now 15 months our from robotic surgery and life goes on. PSA is still undetectable, thankfully.
We had the opportunity to meet and thank Terry Herbert and his beautiful wife Anthea in Melbourne, Australia back in January. We enjoyed Terry's wit and wisdom over dinner; he is a unique individual as all on YANA can likely attest to. [Why thank you, Mike (blushes) - but we were meant to split the bill, you know!]
All for now and all the best to the veterans and the newcomers,
My latest PSA continues to be undetectable, and having to rely on ED meds has become a thing of the past; basically at about 15 months post-robotic surgery I am back to "normal" and life goes on.
We have just finished another 2.5 months of travels (Europe) and, of course, after fishing season I will concentrate on finding some contract work.
All the best to the veterans and the newcomers.
I will have reached my two year robotic surgery anniversary on Nov. 26th. I have also surpassed my goal of 100 fly fishing days this year and considering I was down for 2 months with a torn calf muscle (fishing injury) things have gone well.
My latest PSA is still undetectable and I will stay on the 6 month testing cycle for now.
All the best to the old and new members.
Three years out from robotic surgery and my latest PSA continues to be undetectable.
Life has returned to normal. Not much else to report other than travel and fishing............... MikeC.
Not much new to report other than the local lab is now reporting undetectable results as less than 0.1 (the old minimum was less than 0.02) [Mike mentions in an e-mail to me that this change is because of all the apparent scares that a change of a .02 to a .04 caused men to get unnecessarily re-tested - not on Doctor's orders but on their own. There was a recent study on this issue and you can see it at Ultra-sensitive PSA]
Other than that life is great, and no side effects from my 2008 Robotic surgery.
Mike C (Canada)
Nothing new to report, my PSA is still <.1 (which is the new local minimum reporting level). Life is good, 4 years our from Robotic surgery.
I have now reached my 5 year mark and my PSA is still <.1 which is considered undetectable in Alberta, Canada. All is well and I will now go back to the annual PSA tests, just like before the cancer news.
My latest PSA test continues to be undetectable (<.1), not much else to report. Life is good.
Another year, another undetectable PSA. Not much else to report after robotic surgery in Seattle 7 years ago now.
As always I am available to chat.
I am now 8 years out from Robotic surgery. My PSA has now shown that some Prostate tissue may have been left behind as it is now 0.12; the first time it has appeared above the <0.1 threshold. I have met with a Urologist and we will wait until the reading exceeds 0.2 before any treatment is considered. A PSA rise is never a good thing for survivors, but in general a PSA increase can be a result of a normal aging process and not a direct indication of cancer. Time will tell, but I am not concerned at this point.
Mike's e-mail address is: westslope AT gmail.com (replace "AT" with "@")