I was diagnosed in November of 2006 with BPH (Benign Prostate Hyperplasia). and placed on Flowmax. My Urologist did a cystoscopy and then a uro-flow and advised me that I was going like an 85 year old man! At about six months the BPH got worse again, so I was switched to Uroxatrol.
It worked slightly better and then the symptoms got worse again. By the late Summer of 2007, I was getting really tired of putting up with the symptoms, so I went to see my Urologist to do something more. He at first advised Prolieve (TUMT- Transurethral Microwave Thermotherapy ) and wanted to do some tests. He did a Prostate Ultrasound which showed a normal outside dimension. He then did another cystoscopy followed by a Uro-flow again. This time I was going like a 100 year old (I'm only 58). He then advised against the Prolieve and now was advising the TURP - Transurethral Resection Of The Prostate (roto-rooter).
After carefully considering his recommendation and his reasons for them, I proceeded with the TURP. The procedure was successfully done on October 30th with one day in the hospital and 24 hours with the catheter. Everything was really looking up and I was improving with every day going by. I then got a phone call from my Doctor a week after the surgery. He let me know that the tissue samples (routinely sent in for pathology) came back as 5% cancer. He was shocked. There has been no other indication (including the ultrasound) of any cancer!
I will be seeing him again on November 14th to discuss my progress and then our plan for the cancer. He wants to do a biopsy in a month or so to see what, if any, is left. I hope to get more information from the pathology report as well. I will update as I find out more. Thank God I listened and had the TURP and not one of the procedures that does not provide tissue samples to check!
I went back to see the Urologist this afternoon and got a good report on the TURP procedure. Recovery is going well. I got a copy of my pathology report. It is T1A with a Gleason score of 3+3=6 total. Not too bad. The TURP procedure may make it more difficult to do surgery, so I may have to consider one of the newer external beam radiation treatments.
I am going to get another PSA done on Dec 14th and biopsies done right after that to better see where I stand.
I had a new Endorectal MRI done on Dec. 10. That showed small amounts of cancer all through my prostate. I had another PSA done on Dec. 14th and it came back as 1.0 for about 15 gm of prostate left.
I then had a biopsy done on Dec. 20th, 9 samples taken from each side. I got the results on Jan. 7th, after my Urologist got back from vacation. Right side showed no cancer. the left side had 5 of 9 samples with a total of 10% of the tissue being cancer, Gleason score of 3+3=6. 80 % likelihood of it confined to the prostate and only 20 % that there is capsular encroachment.
I will be meeting with my Urologist again on January 17th and then schedule time to talk with specialists. No treatment will begin before about 6 months after the TURP to provide time for healing, so I have some time to make decisions now. The best options at this time appear to be radiation or surgery.
On Dec. 20th I had a biopsy completed and the results of that are: no cancer showing in the right side (he may have missed it), cancer in the left, 10% of the total tissue sampled, Gleason score of 3+3=6 and 5 of 9 samples taken (that's 9 from each side!), that's very good news. I have briefly discussed this with my Urologist and am leaning toward some type of surgery. Surgery may be more challenging for me due to scar tissue from the TURP that was already done, but I have several good reasons for this thinking.
Over the next 4 to 6 weeks I plan to discuss my case with 3 to 5 experts, most local, and then set a plan of action. I've been advised to wait 6 months after the TURP before beginning treatments, that will be around May 1, 2008. I'm very much looking forward to getting this FIXED!
After many hours spent on the internet, e-mailing and reading books, I have decided to have robotic surgery done in Peoria, Ill. with our local expert. I can stay within 20 minutes of home with this. My surgeon has done several hundred of these, was trained at M. S. K. in New York and is now teaching the procedure at several other midwest hospitals. I am very much relieved with this decision and will be again when the procedure is over.
Thanks to all of those who helped me with this decision! You have all been great!
My robotic surgeon and the Urologist that I have been seeing for more than a year, and am happy with, did not agree on a couple of issues regarding my surgery. Therefore the surgeon "did not feel comfortable" doing my surgery. I cant believe he could not put reasonable differences of opinion aside and do my surgery. I am really disappointed in this! He's going to make me drive four hours away to get my surgery done because of this. Jean and I neither one like big cities and the associated traffic. Indianapolis is only about an hour further than Chicago and easier to get to. I think we can both handle that drive and traffic better.
We went and got home safe at about 5:30 last Thursday from a consultation with Dr. John Scott in Carmel, Indiana, a suburb of northern Indianapolis. He was very confident, has a lot more experience (1,400 Robotic surgeries) and has no problem taking my case! This doctor sat with my wife, Jean, and I for an hour to discuss his methods and my particular case. He was very informative and had a great bedside manner. He has done more than a dozen surgeries after previous TURP (Trans Urethral Resection of the Prostate) surgery has been done, so he knows what needs to be done! We even had a few laughs together!!! I called his surgery scheduler last Friday morning (she leaves early in the afternoon every day, so we missed her on Thursday) to get the surgery scheduled and find out what other tests that he needs to get done. I am scheduled to have the surgery on May 20th at 7:00 am. I also discussed with the scheduler that I would be willing to reschedule if someone cancelled and made an opening sooner, as long as I have enough notice.
We are going to enjoy the springtime and our grandchildren while we wait for this!!!
All for now.
Everything is going great. All my pre-op tests (blood work and EKG) came back excellent & my GP Doc says "go for it". I got my surgeons second opinion back on my biopsy and they both agree on the early stage. At this point I am good to go. My surgery is still scheduled for May 20 at 9:00 am. I am still on a move-up list, but no sign of an opening yet. If I haven't been able to move up by May 1st, I'll probably just stay with my May 20 date. If I hadn't found out about the PCa accidentally, with the TURP, I wouldn't even be aware of it today.
Hi again everyone,
Let me start by saying that Dr. John W. Scott of Carmel, In. and his entire team are fantastic. He is definitely a keeper. He did my surgery on May 20th starting at 3:30 pm. When I saw him again in the morning he told me that even though I had had the prior surgery, there were none of the typical surprises with scar tissue or bleeding. It turned out, with the exception of having some additional reconstruction to do at the bladder neck, it was an ordinary surgery. He was done in 3 hours. He advised that everything went well including sparing the nerves and separating the Prostate from the colon.
He called me again on Friday May 23 to give me the path report. There was cancer all through the Prostate and the Gleason went from 3+3=6 to 3+4=7 with minimal Gleason 4, so no change in prognosis. There was no sign of any penetration or spread of any kind. That's great news.
I feel terrific and am walking as much as I can. I went about a half mile yesterday, at one time. The only pain I have is when I cough. I have been battling a sinus infection over the past day or so and got Zyrtec and a Codein cough syrup to help fix that.
I go back on Thursday, hopefully to get the Catheter taken out and talk some more with the doctor.
All for now Tom.
Well, we got back from Indy safe and sound May 29th late afternoon. I no longer have a catheter!!! Now I have to learn "potty training" all over again. I thought I finished all of that stuff 55 or 56 years ago (I'm a slow learner!).
The P/A put some sterile water in before taking the cath out to see if I was going to completely empty and as I emptied, I was able to do a couple of Kegels! I am leaking a bit here and there, but not a stream or anything so far. We'll see what the next few days bring. I am having occasional bladder spasms, if you are aware of those.
I got a pretty good night's sleep, though I woke a couple of times. I did wake up dry! At least that part looks good so far.
My pathology went from T1C to T2C and my Gleason went from 3+3=6 to 3+4=7 with 30% of it being 4. There was no Gleason 5 found at all. Not too bad. I had clear margins, though the closest margin was 1 mm from an edge. Out of a 36 X 29 X 27 mm gland, at 22 grams, the largest tumor dimension was 9 mm. There was a "vaguely nodular cut surface presented"
My first post-op PSA came back as <0.1, undetectable. All of the reports have come back excellent
I have been getting several imaging studies done to check for Osteopenia/Osteoperosis, etc. I do have Osteopenia in my back and borderline in my left hip. I also have degenerative disk disease in my back. I got a QCT, an MRI and a bone scan done. The bone scan cleared my back from Mets, but my right hip showed a hot spot. I am going to be referred to an Oncologist to get this checked out. I may need a bone biopsy to rule out the Mets in my hip.
All for now.
I just had a CT scan done on my right hip. It could not rule out anything. I then had a biopsy to rule out metastatic cancer. It finally did rule out cancer. The problem is either a cyst or a bone growth. I will have another bone scan done in early September and will follow up with my local urologist.
I did also have an ultra sensitive PSA done a week or so ago and it came back as <0.05, very good. My oncologist is going to ask my urologist to continue to follow-up with the ultra-sensitive PSA tests
That's it for now.
I just retired and am looking forward to a lifelong vacation! My company offered a buy-out package along with early retirement, and I was within a couple of years anyway, so I took their package.
In the meantime, my PSA tests keep coming back at <0.05, very good.
I am still having problems with incontinence (1 pad per day) and ED issues. I am considering having a penile implant done and either an invance sling or an AUS device placed. I have done Kegels, but they cause more leaking than not doing them.
My ED has been with me for several years and all of the other treatments (including shots and the VED) are not working for me. I have been fighting off ED for more than 3 years now.
I have also been having some problems with arthritis of the knees, so that will need to be dealt with at some point. I have tried all of the treatments for this and even the shots failed! I'll have to make the call on which gets fixed first.
I still have the utmost confidence in Dr. Scott and his surgery. He did a really fine job for me. Everyone is different and will have their own results.
All for now,
My PSA continues at undetectable, <0.01, after 2 years.
I am very satisfied with the cancer treatment results. I now have an ED implant (I had ED before PCa) and still have a small amount of leakage, 1 pad per day. Those things are acceptable for me.
I am getting on with my life and treating other issues, mostly arthritis. I have had both knees replaced earlier this year. That is going well. I cannot complain and continue to do very well, overall.
I have continued to fight off various joints with arthritis. I have had my right thumb, my right pisiform bone, [I didn't know what a pisiform bone was either!!] my right shoulder fixed from arthritis and now my left thumb and pisiform have been fixed surgically.
I got an ED implant a couple of years ago and it continues to work well. I am also still using one pad per day to handle incontinence problems.
Otherwise I am doing really well.
My main issues have been related to arthritis and NOT to problems from the prostatectomy. I have had several surgeries to fix arthritis over the past few years. I am also, now on testosterone injections due to low blood levels, around 330 total. Otherwise I am in very good health!
My main goal has always been to get rid of the cancer, and so far that HAS BEEN ACCOMPLISHED! I am still fighting arthritis, diabetes, sleep apnea, and now in 2014, Sjogren's syndrome and Ulcerative Colitis. NONE of these are related to PCa. The ED has been fixed with an implant done by my local urologist and his partner. I now use Deneds or Tena briefs with protection. Thety work better than guards. All of my other ailments are more bothersome than the PCa ever was, but NONE are life threatening. Thanks all. Tom
I have been doing really well with the prostate cancer, no sign of any at this point. I am now 66 years old and on Medicare. I continue to have Osteoarthritis and now have Sjogren's syndrome and Ulcerative colitis/proctitis. I have had 2 knee replacements and 2 hip replacements as well as various other arthritis associated fusions and fixes. I have also been getting steroids and RF ablation treatments for pain at various locations. There will likely be more surgeries in my future. I have also been taking testosterone injections and a low dose of Arimidex (generic) to keep my testosterone and Estrogen levels in check. I have never regretted doing the Robotic surgery for my Prostate. Thank you for looking. Tom
I am still doing really well, though still fighting with osteoarthritis. I am taking testosterone pellets (look up on google, if interested). They work really well and need to be replaced every 3 to 4 months. It is easily done with a trip to my urologist in about an hour or so. A couple of days of minimal pain and on with my life. I have no regrets at this point on my decision!
Thanks all, Tom
I am not experiencing any new side effects and a penile implant has taken care of the ED. I use Depends or Tena underwear to fix the incontinence issues. I am still having more problems with Osteoarthritis than I have ever had with Prostate Cancer. Otherwise I am doing really well!
Tom's e-mail address is: herrtw AT mtco.com (replace "AT" with "@")