I am a 50-year old Lutheran pastor living and working in St. Louis, MO. My wife of 32 years and I have 2 children and 4 grandchildren. At age 40 my general practice doctor added a DRE (Digital Rectal Examination) and PSA to my annual physical exam. For several not very good reasons, I had neglected having my annual since age 47. My father was diagnosed with metastasized prostate cancer at age 61 and died in 1994 after 3 terrible years of chasing the cancer from outbreak to outbreak. So, at age 50 I decided that I needed to get serious about getting my PSA. After all, it was not a question of if, but of when.
On April 28, instead of going to my GP for the exam and PSA testing, I went directly to Metropolitan Urological Specialist in St. Louis. I mention them by name because my research and experience show them to be one of the best physicians groups in this specialty in the area. My exam showed only a slightly enlarged prostate. My PSA was 4.8 - the target for me with family history was my journal.
Just before the Memorial Day weekend, on May 22, I received the news that the biopsy was positive for cancer. Three of the 12 samples indicated less than 30% cancer, the Gleason sum was 6 (3+3), classified as low risk, and graded as T1c. Subsequent bone scan and CT scan showed what the doctor already had projected, that there is no indication of any metastasis.At this point I have upcoming appointments with Metro's director of radiation therapy to discuss the radiation options of IGRT (Image Guided Radiation Therapy) and brachytherapy and another associate who specializes in Da Vinci robotic assisted surgery. If I don't qualify for Da Vinci, my doctor would perform the traditional transpubic open surgery, should we choose a surgical solution.
I'll update when we make a decision as to what treatment we will pursue. Again, more words about all on my journal.
Later: Several YANA members have contacted me after my initial post. Thank you for your notes and support.
I wrote: "If I don't qualify for da Vinci, my doctor would perform ...open surgery." There have been a couple who questioned what I meant by this. I have had a umbilical hernia repair using the reinforcing mesh. There is a risk that engaging that mesh with a port during laparoscopic surgery may result in an increased chance of infection. My primary urologist did not have the experience to have strategies to work with this. I was referred for consultation to a radiologist and to a surgeon who has just completed his 504th da Vinci procedure.
For us, once "cancer" was mentioned, active surveillance/watchful waiting was not a choice we could personally consider. We took HIFU, freezing, and heating off the table. There was not enough track record for me to yet be comfortable with choosing these therapies, no matter how interesting and promising they sound. We were left with radiation and radical prostatectomy as the best curative therapies to find out more about. The radiologist offered a "cure" rate equal to RP, but I eventually decided against radiation. My father's family has a multiple instances of cancer. Should I choose to use radiation now, if cancer should again raise its ugly head in the lower pelvic area, surgery could not be an option in the future. Age and family history leads us to believe that RP is the best answer for us at this time.
Our surgical consult was with Dr. Luis Anglo out of St. John in Creve Coeur, MO. He performed 300 open procedures before switching over to da Vinci. As I said, he has completed over 500 robotic assisted surgeries. His open and informed consultation was positive and comforting. He pulled no punches, openly talked about the risks and side effects. Everything I have read indicates the best hope for successful surgery and minimizing IC and ED after surgery is dependent on age/healing capacity and the experience & expertise of the surgeon. I am convinced we have our man.
CT scan indicated a possible thickening of the rectal wall, and my urologist wants me to have a colonoscopy to be sure no other problems are present. I'll get this done and then get surgery scheduled--hopefully July or August.
MY FRIEND PETER:
I made a new friend last week. You don't always get to pick your friends ahead of time, and such is the case with Peter. He showed up during the course of my prostate surgery. I was totally unaware of his arrival, but he was greeted by everybody in attendance as one uniquely qualified for his task. By the time I regained my senses after the surgery, Peter had obviously become a fast friend. He cared for me deeply and touched me in ways I had never experienced before. And I found I couldn't leave him behind. Upon my release from the hospital, my wife and I made a place for this new friend in my life.
Peter has been faithful; despite my outbursts and even wishing him harm, he as stuck by me without question or recrimination. Peter is giving; he retains nothing for himself but passes on all that he has every minute of every day.
These hot, fast friendships have their challenges. We found that Peter was a bit demanding and a bit clingy. And while his friendship tapped an inner well I rarely thought about, having him around each minute of each day is wearisome. Peter is an "up front" sort of friend, but admittedly very private. So, getting ready to leave the house with Peter is stressful and frankly exhausting.
My friendship with Peter is as close a relationship as I have ever experienced. It is also an ill-fated relationship, for today Peter and I must be parted. The reality is that I must move on in my recovery, and I have to go, alone. Peter cannot go for me. The absence of his indwelling presence will be a void in my life. Farewell, my friend, Peter.
[During a radical prostatectomy, a Foley catheter is inserted into the urethra. The catheter assists the surgeon during the transection and resection of the urethra and then supports the urethra as it heals. The patient keeps the Foley catheter in place from 7 days to 3 weeks depending on the procedure and the surgeon involved. I named my catheter "Peter."]
Recovery was unremarkable; without much pain and much as was expected after reading those on YANA who had gone through the RRP and listening to the pre-op instructions.
Incontinence remains a bit of an issue, due more to prior conditions that has led to some bladder sensitivity. ED after the surgery is quite profound. I've worked my way through Vacuum Erection Device, oral meds, and injections. Only injections bring a usable response, and that is with little consistency. It appears that the only solution finally available is a prosthetic penile implant. Another group FrankTalk.org , has been very useful working through the issues surrounding my ED.
I still believe that the RRP was the best solution for me. I just underestimated the warnings of ED as a side effect. I just couldn't believe that if ED did persist after 12 to 18 months, that it would be so profound and not respond to one of the least invasive treatments.
April 21, 2012 -- almost exactly three years after my initial exam which lead to the diagnosis of prostate cancer.
My PSA continues to be undetectable. I am back to yearly testing. Incontinence beyond the bladder sensitivity that I had prior to surgery occurs only occasionally, and then stress related. Erectile dysfunction was/is the issue that persisted after surgery. I worked my way through the usual therapies for ED, all offering some small result, none giving a reliable-every-time erection anything close to that which I had prior to surgery. I am blessed to have access to a wonderful urology practice (mentioned in the original post) that has as part of the group a specialist in male sexuality. About 18 months after the radical prostatectomy, having exhausted the therapies for ED, we moved on to considering, and ultimately having implanted, an inflatable penile prosthesis (AMS 700LGX). The implant surgery couldn't have gone better, recovery was very manageable, and the result is satisfying.
Now, I'm just dealing with life as a husband, father, and grandfather (with three grandchildren under ten living in the household), and the other issues attendant with growing a bit older every year. As always, I am happy to talk or chat about any of the issues raised by my posts. God bless you in your efforts to be healthy. --SAK
PSA continues to be undetectable. Post-surgery erectile dysfunction has been treated and things continue well in that regard. Life is going on. And that is a good thing.
July 7, 2014, was the fifth anniversary of my my robotic prostatectomy. As of now my status is the same as it has been for a few years now. I have an annual PSA check done and it has remained undetectable since my surgery. My penile implant is about 3-1/2 years old and continues to function well with no issues, and I continue to enjoy it.
My overall health is reasonably good. While I have lost weight over the last couple of years, yet keeping it off is a struggle, but ongoing and worth it. We continue to have three grandchildren living in the household, now ages 13, 12 and 4.5. Family life along with work brings expected stresses. It is very different raising children at 56 than it was 'the first time around', when I became a father at the age of 21 with them both out on there own before I was 40.
Those that contact me invariably ask if I would make the same choices today. My one big disappointment through the whole PC journey was the lack of up-front information provided by my surgeon--or any urologist--as to the possibility of incontinence and impotency from the robotic prostatectomy. One of the reasons I chose the robotic prostatectomy was based on the expectation that it would provide a higher chance (in fact, best chance) of preserving the nerves and thus it would be 'highly unlikely' that I be profoundly impotent. My surgeon quoted his percentages, but ultimately what I did not get was how those were determined. Much of the literature in this regard was highly idealized as well. Given the choice of surgery versus some form of radiation treatment or experimental treatment, I would still choose RRP simply because today I do not live with some dread of a rising PSA. That peace of mind is worth more than the lost of a naturally occurring erection.
As always, I am happy to talk or chat about any of the issues raised by my posts. God bless you in your efforts to be healthy. --ScotK
I turned 56 last month, and it's been just over six years since my radical prostatectomy. I continue to be cancer free, and my annual check shows my PSA continues to be undetectable. For these things I continue to be thankful. For the ongoing incontinence, well, not so much. My AMS 700LGX penile implant continues to function reliably, and reliability is a good thing. Work is busy, life is busy, mundane things take up too much time, blood pressure is a little high and the doc is probably going to want to give me some scrip for it. Yep, life goes on.
I am always happy to talk or chat about any of the issues raised by my posts. God bless you in your efforts to be healthy.
Nine years and not much has changed. PSA is still undetectable, no indications to worry about on the cancer front. My weight is up these last two years, with it my blood pressure and bordering on pre-diabetes. Still incontinent as I have been since surgery -- using one pad a day to take care of dribbles and sudden urges that overwhelm/surprise me. Penile implant still functioning well.
As we enter the last year of the decade, it has been 10 1/2 years since my surgery, and my PSA has remained "undetectable". The prosthetic penile implant received in 2010 continues to function as designed. In February of this year I finally addressed the lingering urinary incontinence with an InterStim device, and this has alleviated all but the worst stress leaks. In April of 2019 I was diagnosed with Parkinson's Disease and started on medication to help mitigate some of the symptoms. I continue to work full-time and look forward to doing so for at least another four years. All the best for a happy and healthy new year, guys.
Scot's e-mail address is: prkinnaman AT gmail.com (replace "AT" with "@")
