Tudpock's Brachytherapy Journey

Part 1
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.

Part 2
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.

Part 3
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.

Part 4
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...

Part 5
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...

Part 6]
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...

Part 7
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.


Part 8
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.

Part 9
]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.

Part 10
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.

Part 11
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.

Part 12
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.

Well you have accomplished Step 1 - making a decision - congratulations.  I've been where you are and am well on the journey so if you have any questions regarding Brachytherapy please do not hesitate to post them - if I can't help you I'm pretty sure there's someone here who can and will be able to.

Good luck in December, I'll be think of you - we're three years since initial diagnosis and doing very well.

Please keep us posted and hug your wife, she's just as affected by this as you are - trust me on this one.

I can speak to seed migration because we did in fact ask about it.  My husband opted for something called "stranded" seeding where the seeds are actually stranded together like pearls which almost alleviates the chance of migration and we in fact, did not have any migration nor has there been any migration since surgery in 2006.  The fellow in the bed next to my husband opted for regular seeding.  There is some chance of migration apparently but apparently the Oncologist did not feel there was any significant risk.

Happened to notice your reference to the "Brotherhood of the Balloon",a support group made up of men who have had proton treatment.  It began with a small group of guys who wanted to stay in touch via email after leaving Loma Linda (hence the funny name) - others heard of it and wanted to join - it now has members from every state and many countries - the men are from all walks of life.  Besides befriending each other, we have many other purposes.  To name a few, we spread the word about Pca and the importance of early detection, provide support and information for men beginning their search for a treatment, assist those having problems with their insurance companies,etc.  But most importantly, we have raised millions of dollars for research, much of it coming from our own pockets.  Out of this funny name much good is being done.

Wishing you the best with your treatment choice.

Dutch

Welcome to the post-surgery side!  If you have any questions on Brachytherapy let me know and I'll help you where I can.

Please, one word of advice - relax - your body (and mind) need time to recover, take the time you need.

Thanks for keeping all of us posted. I am glad you were able to make a decision that you are comfortable with, and wish you the very best. As you journey along let us know how you are doing. That will help others in their decision making as well. Blessings.

(Todpock18)- Multiple opinions have no down side when you are searching for choices in protocls in treating PCa and good we have some choices as patients. The only down side is it takes effort look over everything and it can be confusing, takes time and studing, and biased data can exist (treatments may use different set of patients or psa numbers etc., to define or show "cure-rates") so as to make it more confusing. Alot of times the patients in the radiation protocols are there to begin with because in effect they are not good candidate patients for having 'successful surgery'(not saying that about you), they maybe ran their data on Partin tables, Narayan, Bluestein or nomograms etc., or doctor may tell them your are a higher risk stats person (perhaps even considered non-curative via nomograms etc.), so this would also make the radation protocols less comparitive (equally) to surgery......i.e. does not mean it is not possibly just as effective in general (i.e. it could skew results and data towards worse than it could be with equally assessed patients). Also, external radiations can do some areas beyond the gland itself, to hopefully kill the PCa (should be a plus sign for it).
I had a leading LRRP surgeon tell me 'I won't do surgery on you, period'...so then you seriously start looking elsewhere (by the way he was and is correct on that in my case, I spent alot of time and opinoins, looking into that). Some patients have various reasons for looking elsewhere, nothing wrong with that it is your journey only.

There is probably a place for all treatments patients at some juncture and that is why they exist and still have people doing different types. (i.e. all roads lead to Rome) Hey did you do this at Dattoli Center in Florida, btw?

My radiation and combo drug gig, resulted in a psa nadir of about 6 months post radiations (so we have to wait to see...how effective was it?). Might be useful for knowing for others (comparatively), radiation results are not immediate as to looking at psa numbers. So for others do not panic about psa numbers, post radiations, it takes time...look into what may be the 'norm' for your disease level and/or treatment protocol and then compare. (is it a few months or is it 12 months etc.)

Good results to you, will be with you on the psa monitoring post treatments

Neutrondbob-zufus   (radiation bounce, read up on that to understand it can happen, it did not happen in my external IMRT fo me)

Tud,

Its always a pleasure to read the details of your story/journey. It should be a regular feature anyone new considering going the "seed" route. Your journey gives a lot of credence and hope to that as a primary treatment for PC.

Keep on keeping on, brother.

David in SC

Dear Joe:

JohnT makes a fairly compelling case for IMRT in addition to seeds for G7 and up.  Not knowing your stats it is hard to say whether or not this would be right for you.

I did have the option to do both and it was a close call for me.  In the end, the urologist-rad oncologist team that I chose felt that the cancer could be effectively handled with seeds alone and were reluctant to do additional treatment that they felt was unnecessary.  That had to do, of course, with my particular case including low number of cores, clean DRE, low % in each core, normal sized prostate, low PSA and low PSA velocity.  In fact, had I been a G6, I would have chosen AS.

So far I am pleased that I chose BT.  The only think I would have done differently for sure is to get a color doppler biopsy done.  That might have led me to the double treatments.

So, look at your stats, talk with your docs, get a color doppler, then I don't think you will go wrong by making an informed decision between BT alone and BT/IMRT together.

Good luck and please let us know how you proceed.

Tudpock

Joe:

Other than the number of positive cores, you might have considered AS.  Here are the Johns Hopkins criteria for AS:

1.  Age 60+.

2.  T1C, i.e. nothing felt on DRE.

3.  PSA density of .1 or less (this is PSA divided by size of prostate, e.g. PSA of 3 divided by prostate size of 35cc equals PSA density of .086 which is less than the .1 threshhold.

4.  Gleason 6 or less.

5.  2 or fewer cores of cancer.

6.  No core with more than 50% cancer involvment.

However, with 5 of 8 cores, I would personally agree with your decision to get treatment and I also think your logic is sound to combine the BT and IMRT.  Both JohnT and I have been extremely happy with our choice and you are a poster boy for this as well.

Just as in surgery, the experience of the radiation oncologist and urologist team are crucial to the success of your procedure.  My guys had worked together over 500 times + other procedures done separately. 

As you saw, my "journey" is farily extensive (and mayber boring).  But...boring is good when your biggest post treatment challenge is working on your tennis serve...

Tudpock

Tudpock

A good definition of how AS should be approached.

Jim you have done a great job on this thread. Stay well!

All the very best!

Tony

Tud, your story - and YOU, are a true inspiration! Congratulations and keep on keepin' on! I know that you were one of the guys that helped me to understand that there are other options to treatment of the beast and for that I (and many, many others) am eternally grateful.

Best. . . .