Posted 11/26/2008 1:22 PM (GMT -6)
OK…before the details start to slip away, I thought I would start a thread on my brachytherapy journey. There is an off chance it may be helpful to someone; if not, at least it’s therapeutic for me.
My primary care docs have been watching my PSA for the last few years as it has risen slowly from the 2’s to the 4’s. This summer I had a reading in the 5’s followed up by my last one, 4.2. So, he suggested I see a urologist and I agreed. The first guy I went to just didn’t seem right. He had big hands (think “finger wave”) and his office was dirty. He did recommend a biopsy. His method was to do it in his office without anesthesia and just “grin and bear it”.
With those strikes against him, I decided that I’d better take more control over the process and find a different urologist. Maybe I just didn’t like the biopsy suggestion at all, but I think it was really the big hands that made me run the other way.
[One of my neighbors is a hospital administrator so I asked him for suggestions. He told me that Washingtonian Magazine (I live in Northern Virginia) lists the area’s best doctors. Their methodology is to survey physicians throughout the area as to whom they would turn for various procedure. Then the results are published. It could be a popularity contest but I figured I couldn’t do worse than Mr. Big Hands. My neighbor did have an assessment of DC-VA-MD hospitals, so I narrowed my search to physicians who practiced at those hospital.
Through that process, and by looking at the web site for the practice I chose, I was able to find an experienced urologist, with all of the right credentials who actually published short articles about prostate issues on his web site. One of the things I liked right away was the fact that he did his prostate biopsies under anesthesia! Anyway, I had an appointment for late August and he recommended a biopsy as well.
The biopsy was September 5. It was done on an outpatient basis under anesthesia as promised. Overall, not a bad experience…Fleet enema before, antibiotics for day before/day of/day after. I had a little general discomfort the first night but a couple of Tylenol took care of it. I had a little spotting in my urine for a day (and nasty looking ejaculate for 3 weeks). All was well until the doc called several days after the biopsy with the bad news: PCa, Stage T1C, Gleason 7, 2 samples out of 16. But, my prostate was not enlarged, my health was otherwise excellent and he told me there was a very high likelihood of cure. He suggested that my wife and I come in to talk with him about treatments ASAP]
ASAP meant as soon as we could drive there to us and he was great about clearing out time for us the next day. We started right away on the internet before our appointment but just got the basics down before we met with him. He was very reassuring, i.e. sorry that I had the disease but confident that I would be cured. He spent about an hour with us going over the test results in detail and discussing the disease including various treatments. He said that I was a good candidate for either surgery or radiation, with robotic da vinci and seeds as the two most probable options for me. He gave me copies of my biopsy results and strongly suggested that I seek at least two other opinions, one from another surgeon and one from a radiation oncologist. He was able to refer me to both and his staff called and made appointments for me on the spot.
We were able to get appointments with both within a week. Then we spent pretty much 24x7 reading books (Walsh is an excellent primer) and searching the internet to get ourselves educated. The good news was that I had options and the bad news was that I had options. We looked at pretty much everything, e.g. the standard ones like radiation and surgery, but also proton beam therapy, ice balls, internal and external beam radiation, HIFU in Toronto, clinical trials, etc, etc, etc. We developed a long list of questions for both doctors. Both of the doctors seemed great…answered our questions and told me that I was a “poster boy” for either robotic or brachytherapy (why can’t I be a poster boy for tooth decay or something simple?). The surgeon, however, hedged a little when I asked him how many robotic surgeries he had done….turns out it was 20. The radiation oncologist had done over 1000 brachytherapies.
At this point, I narrowed it down to brachytherapy, robotic surgery or proton beam radiation. I pretty quickly ruled out the proton route…the data re cure and SE's is mainly anecdotal rather than scientific. However "The Brotherhood of the Balloon" is a great group. Re surgery, I was concerned, about the lack of experience of the surgeon so I went to another surgeon who had 500+ robotic surgeries under his belt. He was terrific and I almost told him to start cutting while we were in his office but discretion won out and we went home to ponder.
While pondering, I knew that it was either seeds or robotic surgery, so I made appointments for both procedures. Then we spent another week or soon the net and were no closer to a final decision. At this point, being retired and knowing this cancer is slow growing, we took off to Florida for a month in the sun. Playing tennis, beaching it, etc. were very therapeutic but, unfortunately, it didn’t cure my cancer.
So, toward the end of October, we made a decision…seeds for sure. It’s hard to tell exactly why that was our choice. I can certainly understand the men who opt for surgery. There is a finality about “getting it out” and seeing the pathology report. But, all of the data shows that the cure rate for my cancer situation is virtually identical for seeds or surgery. So, it came down to which side effects were more tolerable for my psyche. With surgery there is the catheter, longer recovery time, incontinence and potential ED. But in many people those get better with time. With seeds there is quick recovery but immediate “ urgency” and a small chance of potential ED to come later. Anyway, my logic and psyche said seeds and seeds it is.
I cancelled the surgical appointment; we enjoyed the rest of our time in Florida and came back to Northern Virginia in early November. Now I’m on the brachytherapy timetable.
My next step was to go for a mapping and volume study. This is basically where the radiation oncologist sticks the camera up your rectum and takes lots of pictures. Being a coward about this stuff, I asked him beforehand if he wanted to give me drugs before the procedure. He told me not to be a wuss, that it would be a little uncomfortable but not to worry. All was fine, even the catheter, until I took a peek at the device he was about to insert into my rectum…big mistake, I should have kept my eyes shut! Needless to say, I closed up pretty good then. He eventually “got it in” (think jail house rape scene) and, once that was done the photography was uneventful. I told him he was a sick man for not giving me drugs; he was not amused and now I’m thinking that perhaps I shouldn’t piss off the man responsible for curing me of cancer! Oh well, maybe he will develop a sense of humor…at least his nurse laughed when I called his device “Big Sam”.
So now I’m scheduled for my brachytherapy on December 9. That gives me time to eat lots of turkey this week, get this thing done, then move on with my life. In the meantime I’ll keep checking in with HW with others who are in this club and sharing my newfound knowledge with newbies.
I’ll end this post for now…if there is a word limit, I must have exceeded it by now. I’ll bump this back up after my procedure with an update.
I had my seed implants yesterday and all went well. The whole thing was outpatient, with my Uro and Radiation Onclogist working together for the over 500th time. The catheter was out before I woke up and, other than a little soreness in my rear end, I feel great today. I took a couple of Vicodin yesterday and slept like a baby last night.
I started Flomax the day before the procedure and it seems to be working. Good flow and only a little burning. I know the "urgency" issues will come in time but I'm hoping the Flo will help that as well.
Now we will see about side effects. Clealy I will not have the immediate post-surgery stuff that most of the guys on this forum post, e.g. incontinence, lengthy catheter experiences, etc. However, I know that I may face others...but at least the ED issues will be down the road if at all.
The biggest concern, of course, is whether this cures the cancer. My docs and all I read say it will. I will not have the immediate satisfaction of "knowing it's out" or pathology reports, but my I'm ok with that. And, heaven forbid the cancer comes back, I won't have some options in my bag, but I'll just have to use one of the others. Anyway, I will continue to update this Journey over the next months mainly so newbies can see another seed experience described along with the many surgical experiences so well described here.
It has now been 1 month since my procedure. My docs were right. I have had zero, none, nada side effects. I am on Flomax for another month or so and, so far, it has done the job as my urinary functions are totally normal. The rest of my life has been normal since the procedure. Sexual functions work fine (tried at 2 weeks post-procedure) and all other activities, physical and otherwise, are fine. I know that there MAY be issues down the road but, so far, this has been a great choice for me.
Almost at 2 months post-procedure now. I stop the Flomax next week and, hopefully, it will be a non-event. I have still had no real side effects. I did have a little urgency when I drank too much wine or caffeine, but I then cut out caffeine and alcohol for the duration of the Flomax and have had no other problems. Before the procedure, I generally got up once per night to "go". Now it's probably 1 1/2 times per night, i.e. some nights once and some nights twice. Still, no big deal. And, no problems/issues at all with sex. Every day that I read the posts on this forum re the problems the surgery guys are having I am thankful for my choice of brachytherapy. That's not a criticism of their choice; I just know that my choice was right for me...
It has now been over 3 months since my procedure and it's becoming a distant memory. I stopped the Flomax at the 2 month mark, but felt some small difficulty starting my urination, so I went back on it for another 3 weeks. My big fear was waking up in the middle of the night, not being able to "go" and ending up in a strange emergency room with a stranger putting a catheter in my weenie. So, the second time was the charm. I stopped the Flomax a week ago and all is well and normal. I now only get up once per night to "go" and have no other issues in that department. The sex life is still the same as before the procedure and I continue to be thankful for that. My next milestone will be my PSA test at the 6 month mark. I suppose the Uro and the Radiation Doc will want to do a DRE but that's the price of still having a prostate...
5 1/2 months now. Same report as at 3 months...i.e., all is well. I'll have my first post-procedure PSA test in a couple of weeks and am expecting the best.
(2 weeks later) It's now been 6 months and I just returned from my appointment with my uro-doc and a discussion of my new PSA, which is 1.4. He and I are both delighted. He wanted the PSA at 6 months to be reduced by at least half of the pre-procedure number and we're down much more than that. Every case is different and he does not know what my nadir will be. But, he thinks that my number is great and the next check up is in 6 months. Still no side effects; the doc is not surprised...
10 months now. Same boring report...everything works well and the whole thing is a distant memory. However, after reading many heartbreaking post-surgery stories on HW I have hardened my position re brachytherapy and clearly advocate for that treatment for those who qualify.
It is now May, 2010 and it has now been 1 1/2 years since my brachytherapy. I had my PSA test last December (at the one year mark) and it was down to 1.0. Both docs are still "delighted". The radiation oncologist doesn't need to see me any more unless I have problems and my urologist just wants to me come in once per year for an anniversary DRE and PSA check. My quality of life remains great. No urinary, bowel or sexual issues...in fact no issues at all.
]I just returned from my 2 year check up and everything is great. My PSA is now .8. It continues to drop and time will tell where my nadir lies. No changes (yea!) in quality of life, i.e. no urinary, bowel or sexual issues. My urologist is convinced that where I am now after two years re SE's in where I will be period...I sure hope he is right. Life is good.
My 3 year check up (12/2/11) was just like the last ones...no problems and everything is great. PSA has now fallen to .5. Don't yet know where the bottom will be but all is well and life is still good.
My 4 year check was also uneventful. My doc still does a DRE so that's fun but the PSA is now .1, still no SE's and - other than visiting my friends at HW - I don't feel like I ever had PCa. I consider myself cured.
I guess I've been neglectful in that I have not updated this for two years. This will be short: Still cured, no SE's, now at nadir of .1. Life is good.