THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Referred by my primary physican to a Urologist in Fall of 2009 who wanted to do a biopsy asap even though my PSA was right at 2.5. I resisted until Fall of 2011 when my PSA; had increased to 2.9. I decided to do the biopsy in January of 2012 since I had a deductible to meet and had not used any of it in 2011 to that point. Might as well deal with one deductible for the year rather than spread it over two years if the worst case scenario presented itself. Had biopsy on January 14, 2012. Six of 12 cores positive and graded at a Gleason 6. I will say the biopsy was perhaps the worst part of my entire experience surpassed only by the catheter which was more bothersome than painful. Perhaps because mentally I was really not prepared for it or more likely I envisioned it to be so bad, that it was.
After the diagnosis began my Prostate Cancer World Tour 2012. I visited with my original urologist who did the biopsy but neither myself, my wife or my parents cared for him. He was selling surgery and tossing all other options out the door because oddly enough, his office did not do them. I was referred to a radiation oncologist who was very professional and recommended Brachytherapy with iodine seeds. That was his specialty and he had good results. I considered that strongly but decided ultimately that that too was still more invasive than I preferred as they remain in your system forever, can come loose and still require some surgical implementation.
I was put in touch with Siteman Cancer Center here in St. Louis and met with both a Radiation Oncologist and a surgeon. Part of the blessing and the curse was that my diagnosis was early so I had options - too many options, really. Radiation Oncologist was great and recommended a 5 treatment option as part of a new protocol. I would be the second patient. The problem was that I did not want to be the guinea pig. I also met with Dr. Figenshau (head of Urology at BJC West County). He was interested in the CT scan I had done as we had made him aware of the pelvic kidneys I had. His fascination with the CT scan showed me had a passion and cared about what he did. He was easy to talk to and talked to me - not down to me - as others had done.
My final decision worked like this: I wanted something that gave me the best chance to survive. I wanted something that gave me and my doctors an insight into what I was facing should add'l treatment be needed. Side effects would be there regardless of what option I chose. I wanted it OUT of me. I did not want to live with it. Ultimately, I chose the Robotic Laproscopic Surgery and set a date for April 9th, 2012. The date was significant in that it was the first week of baseball sesaon and coincided with the NHL playoffs. For those who know me they should not be surprised.
Before I continue, I must admit having extra people with me every step of the way helped a lot. You cannot possibly digest all the information thrown at you and it helps to have others there. I had my "posse" and between the 4 of us, we had 3 different ideas on what I should do. Until I made my decision however, I did not want to hear theirs. It was very important to me that I decide what I should do but I did want imput from those around me. In the end, when I chose surgery even I was surprised by my decision. I had wanted to avoid surgery at all costs and yet common sense was telling me otherwise.
April 8th (day before surgery) I was on edge. I tried to do every last minute thing I could think of but finally just gave up knowing I could not do everything. My doctor had offered me Xanax if I was having any anxiety and I did fill the script although oddly enough just having the medication available allowed me the peace of mind to not even need to use it.
Hospital staff was fantastic and caring. I arrived at 5:30 am and was under by 7:30 am. My anesthesiologist was my friend for the day and I made her promise that as soon as we hit the operating room doors, I would be out. She delivered beautifully! I have two teenaged kids and I was worried about how they would handle everything the day of surgery so I put together a "Top 10 List of Reasons Why I Chose Surgery" ala David Letterman style and asked them to post it on my facebook page every half hour beginning with #10 starting with when surgery was to commence. It was my way of keeping them occupied at the hospital waiting room and letting all of my friends know that I was open and dealing with my condition in my typical fashion. It was quite well recieved.
I awoke around 3 pm although truthfully I was not aware of my surroundings until about 9 pm. My big trigger for me was to walk. I had made that my job after surgery and had drilled it into my brain so much that by 10 pm, I was walking - and then I walked three more times overnight. The staff was great and very caring and made the entire experience much more positive than a hospital stay should be. I thank them very much for that. By Tuesday 5 pm, I was back home. Sore stomach (think too many ab crunches) and very irritating catheter. I ended up sleeping on our reclining couches for the week since we also had a tv and my schedule was already turned upside down plus getting into and out of bed was tougher than I had envisioned. And the aforementioned NHL playoffs being on the West Coast meant later starting times anyway.
For those just beginning this journey, I recommend practicing kegels 4-6 weeks ahead of surgery. I would specifically stop and start your urine stream each time so you do it correctly. I would then transfer that to do a kegel every time you stand up or cough or sneeze. The end result for me is I am two days removed from my catheter as I write this and I have had maybe one or two drops of urine escape in that time. In fact, as I sit here at my office desk on Wednesday April 18th, I am 9 days removed from surgery and aside from an itchy stomach, I feel fine. I walked a couple miles yesterday with my neighbor to and from the store and that helped a lot as well.
It is too early to tell about the potency side of the equation. I am starting 5 mg of cialis daily and will see if that helps me regain anything. I will say I look and feel smaller which I guess is to be expected since they take the entire prostate and cut the urethra above and below it. Either the bladder drops a little or more likely the penis gets pulled up slightly. I hear different theories and all sound plausible to me. Will add more in a few weeks or when a development warrants an update. I tried the "use it or lose it" method which meant starting before surgery with Cialis ( or Levitra or Viagra) and on the one day I did use it well, let's just say I happened to be walking through Lowe's and I never got so excited over hardware before!. So I know pre surgery it worked just fine. I am on day 2 after surgery and so far not much has happened although with all the trauma it may take the nerves some time (if ever) to recover. I am hopeful and with a lot of help from my wife, this will resolve over time.
I rec'd a call from my Urologist yesterday and he gave me the good news. Cancer was about 10% involved in prostate and most graded out at 3 with a little 4 and 5. No cancer found outside the margins and lymph nodes and seminal vesicles were clear of any cancer. Best news I could hope for. I will get my PSA in a few weeks and hope it is undetectable. No other course of treatment is planned at this point.
No matter what option you choose today, there are good results with them all. The most important thing is to have the choices. That means generally that you are in control and your disease is not dictating what course you have to take. Take control, ask questions, do some research and get more than one opinion. The YANA site helped me learn about what I could expect from the various treatment options and I owe the men who answered my questions a big thank you for doing so. The best way I can repay their help is to offer my experience to those that follow me. There is life after diagnosis and it is all good.
Just think of it this way: No More DRE's!
Back to the doctor today for my 4 week post op check up and PSA reading. Happy to report my PSA is undetectable (actually less than .001) and according to my doctor, I have a less than 4% recurrence. I will take those odds any day although I prefer to look at it as a greater than 96% chance for being free of prostate cancer. Continuing the 5 mg daily cialis although long term I do not think it will be needed but for now my doctor thinks it will help with long term recovery of the nerves. Urinary continence is fine although I am wearing a pad (more as a security blanket for me) and it was suggested that in a month or two, that really will not be needed. Some post op soreness where the stitches have not yet fully dissolved and when I sneeze it hurts in the abdomen but that is apparently normal. Next appt is in 6 months for PSA; check.
Six month follow up on November 14, 2012. PSA undetectable. Will follow up again in 6 months and will visit doctor in 1 year. Feeling good - need to get back to working out which I have not done on a consistent basis since surgery. No continence issues and have cut back from 5 mg daily Cialis to 2.5 mg daily due to some issues with indigestion (or a feeling of acid reflux). No ED with lower dosage. Could probably eliminate but why rock the boat when I can well...rock the boat!
One year follow up: PSA undetectable. No incontinence issues and have slowly gotten back into working out although not in a routine due to unpredictable schedule. ED shows up somewhat if I stop taking Cialis daily for a week at a time. I take it every other day or two days on, one day off and that seems to work for me and makes the prescription last longer.
Hit 18 month mark post surgery in November. PSA was undetectable. I decided to take cialis 5 mg daily but only every other day as any more and it is overkill. No real side effects and if there are, they are so managed into my life that I am not aware of them.
Recieved my latest PSA result which was <.01 (as opposed to undetectable) but means that I went to a different lab where they code it slightly different (apparently). Either way, its apparently of no concern.
Been a tad negligent about updating as life has gotten back to normal/busy. Went in to see my family physician for my semi annual physical last October and PSA was still undetectable. This April will be 4 years cancer free. I am taking Cialis about every other or 3rd day as it helps with both ED and continence. But both are really quite manageable for me. One of the guys I bowl with also had prostate cancer and Da Vinci surgery and while he is older than me, we both have similar side effects although his appear to be more severe than mine - or at least he has a more overactive bladder than I do. Will update again in April or May or whenever I go in for semi-annual physical.
David's e-mail address is: dbcclu AT sbcglobal.net (replace "AT" with "@")
NOTE: David has not updated his story for more than 15 months, so you may not receive any response from him.