My name is Steve Abbott. My father is currently a 7-year prostate cancer survivor diagnosed at age 64 so I knew I was at greater risk. However, what I didn't know what that I could have prostate cancer with no symptoms whatsoever and that my case could be more aggressive than his at 18 years younger. As a result, I thought I was doing great with my monitoring by getting a DRE and PSA at age 45 and then starting annual monitoring at age 50. Given that, I made my first-ever appointment with a urologist on July 2nd, 2013 and fully expected the "everything's great; see ya next year!" Not so much.
So here I am. I had a robotic radical prostatectomy on September 3rd, 2013 and all aspects of my recovery are ahead of schedule at this point. I do not have a "drain" and I am scheduled to have my catheter removed on September 9th, 2013. I both look forward to - and dread - the catheter removal ceremony. :-)
I chose surgery as my treatment method because I am relatively young and have a fairly invasive/aggressive cancer that may ultimately require secondary treatment with radiation. Additionally, I am still young and do not know if/when another cancer may present elsewhere in my body and would hate to be without a radiology option at that point. Of course, only time will tell whether it was the best choice or not and I'm not sure I will ever really know. But for better or worse, that corner has now been turned and there's no real benefit to looking back, so I won't.
I will post an update once I have post-surgical pathology reports and will at that time comment on the extent of my side effects and how I am managing them. In the meantime, I am thankful for this community of gentlemen, many of which I have already consulted as a resource.
Hello all. I was originally scheduled to receive my post-surgery pathology report on 10/3/2013 (a month to the day from my DaVinci robotic prostatectomy) but life got in the way! On 10/2/2013, I started with excruciating pain in the form of a pronounced "hump" on the left side of my groin. As most all of us do, I immediately took the Internet to self-diagnose my problem and concluded that I was suffering from "abdominal bloating" as a result of a recent change that I had made to double my daily intake of dietary fiber. I drank gobs of peppermint tea and water in a failed attempt to relieve the pressure but soon started vomiting (which I attributed to drinking way too much liquid way too fast), after which I did the next dumbest thing I could have done, which is go for a long way in hopes that would relieve the bloating. I had to stop three times on the walk and either lean on trees or sit on the ground because it felt like I was being stabbed in the gut with a machete. It was then... and only then... that I decided to finally do something smart and call my surgeon.
He diagnosed my problem in less than five minutes over the phone. As it turns out, I had an "incarcerated inguinal hernia" on the left side (the same side as where my neurovascular nerve bundle was removed) that required an emergency "open" surgery to resolve. No laproscopic procedure for me this time! :-( Anyway, I am once again recovering... this time from the second major surgery in a month and I am doing amazing well all things considered.
Now for the important stuff... we did drive the 120 miles to Dublin, Ohio this past Thursday (i.e., 10/10/2013) to receive my post-surgery pathology report and the news was as good as we could have hoped for. As we suspected might be the case, my Gleason score was upgraded from a 4+3=7 to a 4+4=8 but the margins, seminal vesicles and lymph nodes all tested negative for cancer. Given that, I will continue to be aggressively diligent in monitoring my PSA and living as healthy a lifestyle as I can tolerate in hopes of making recurrence a non-issue. My surgeon felt very good about what he saw during the surgery and the pathology results confirmed his sense of urgency around having the surgery done quickly, especially given the speed in which mine was moving (side note: my PSA went from 0.4 to 10.6 in five years).
I am dealing with the usual side effects but at a little more than a month, I am mostly dry. I am very active during the day so my one lowly pelvic floor muscle weakens significantly by about 5:00 pm, but I am dry all through the night and only use a few thin pads a day now. This is especially gratifying given the emergency hernia surgery (and resulting 7-inch incision across my abdomen) that popped up in the middle of recovering from the prostatectomy. I have every reason to believe I will become fully continent soon and we are working on the ED issues, but that was showing some progress right up until the date of the second surgery so I am hopeful I can pick up where I left off without too much effort.
I could *not* be more happy with my outcome to date, the surgeon that did my prostatectomy, or the hospital where I had it done. I would be happy to pass along details to anyone for which seeking treatment in the Columbus, Ohio area is an option so please do not hesitate to e-mail me at firstname.lastname@example.org.
As always, I am grateful to Terry for starting this site and for the work done to keep it updated. Godspeed and low PSAs to all! :-)
Hello All - I realized that I did not post my cancer stage per my post surgery pathology in my last update. I previously mentioned that my Gleason score had been upgraded to a 4+4=8 from a 4+3=7 and my cancer stage was changed from a pre-surgery T2b to T3a Nx Mx post-surgery, indicating "extra prostatic extension," or that the the tumor extended beyond the prostate "capsule" and into the surrounding layer of fatty tissue. Thankfully, the tumor was only on the left side of my prostate and there was no indication of spread to the pelvic lymph nodes or seminal vesicles or other metastasis.
I am also happy to report that I am now seeing some solid progess toward re-gaining urinary control. Evenings are still the most difficult, but I am getting through the majority of each day with just a thin pad or two. ED is still an issue and will be for a while, but I am still optimistic and am not going to give into despair on that.
Signing off for now. Best wishes for low PSAs to all.
Oh, well. Traveled to Columbus, Ohio last week for my first post-surgery PSA result and things didn't *quite* worked out like I hoped. The PSA was not "undectectable" at 0.18 and based on the extraordinarily velocity I was experiencing pre-surgery, the docs expect my 0.18 will quickly double to 0.40 or so. Given that, we will head back to Columbus for another PSA on 1/16/2014. The hope is that the PSA will be stable but we are prepared for the fact that we may be having the salvage radiation discussion with my doctor on that day. It's a pretty huge bummer and I've allowed myself a few "down" days, but I will come roaring back in time for this coming week. It's all good, and there are so many treatment options available that I insist on staying positive! :-)
So I appear to be the "1 in a thousand" where both curative treatments failed and my cancer had already spread prior to my initial treatment via surgery in September 2013 (this despite my surgical margins being "clean" and no trace of cancer found in my lymph nodes). My PSA never did go to zero but did drop to 0.2, and it held at that level for about six to nine months, at which point it increased to 0.3. Still a very low level relative to where it was and relative to a lot of guys walking around out there but as us post-treatment guys know, it should be zero post treatment.
So... it's now more about the doubling time than anything else. So far so good... my PSA is not increasing at the rocket ship trajectory it was pre-surgery, so I am now hopeful that any future increase will be a slow and manageable clip as I really do not want to have to go on hormone therapy (my wife is going through menopause right now and it's not fun!) :-)
All that said, I feel good and I have a great quality of life. I consider myself very lucky to be alive and celebrate that fact whenever - and however - I can. I will close by wishing low PSAs and high quality of life to every guy out there reading this! Take care all.
Wow - I just realized that I never updated my story throughout my entire course of 33 radiation treatments! Sorry about that. So yes, I ended up going through a secondary course of radiation in February and March 2014 after my PSA did not decrease from my initial 0.2 post-surgical PSA. The presumption at that time was that there were some cells that were outside of the gland and surrounding tissue and lymph nodes but that the cancer was still localized and a secondary course of radiation would knock it out, especially since there was no trace of cancer in the lymph nodes. Unfortunately, that turned out to not be the case as my PSA is slowly rising again after both surgery and radiation.
All that said, I am happy to report that I feel fine and radiation was not a big deal. It was a minor distraction to my life and my side effects have been manageable. Based on my experience, I don't think any guy out there should fear the radiation itself. Not a big deal at all.
I continue to feel well... very well, in fact. I had put on more weight than I should but I am back to paying better attention to that by eating better and working out more.
From a urinary standpoint, I am also doing well. I don't wear a pad of any type but I do have an occasionally leaky day that is almost always self imposed by drinking things I shouldn't (beer for starters, as that is always a trigger). Anyway, enough of that.
Still a minor amount of erectile dysfunction, but I also can't complain much about that all things considered. Unfortunately, my wife was also diagnosed with cancer early in 2015 so during that year of treatment for her, there weren't too many opportunities anyway. It's been quite a two years for us, but oh well...
My PSA continues to rise despite surgery and 33 radiation treatments but my oncologists are hopeful that my case is micro-metastatic and never reaches lethal levels or worst case scenario, that a third cure option will be developed in time. My PSA was 0.18 immediately after surgery, then went to 0.3 and stayed there for about six months, then doubled to 0.6 in the fall of 2015 and increased to 0.9 at the end of January 2016. Here's hoping it settles down again for a bit.
Best of luck to all.
Oh well... things have changed quite a bit since my last update in February 2016. When I last wrote, my PSA was beginning to creep up in a noticeable way but was still only at 0.9 (this is a post-prostatectomy and post-radiation number). By May, my PSA had increased to 1.4. By early-September I was at 4.9, then 11.2 by late October and 22.1 by the end of November. So on to hormone therapy we go...
Started HT in mid-December with a combination of Casodex and a Lupron injection on December 22nd. Side effects have been pretty manageable. The hot flashes are a bit ridiculous (15 to 22 a day) so I need to do something about that. The hot flashes contribute to restless sleep (for obvious reasons) so I may need to do something about that as well as it's not good to go for months at a time on four hours of sleep a night.
CT scans in November reveal metastasis to nearly lymph nodes but nothing found in the lungs, bones or organs at this time. I still feel good despite everything and remain optimistic that additional therapies will be developed such that I can live out a normal lifespan and this can be managed as a chronic condition.
Good luck to all of my YANA brethren out there.
Steve's e-mail address is: abbsteve AT gmail.com (replace "AT" with "@")