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Probable change of treatment plan and concerned about delay

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Posted 3/27/2017 9:16 PM (GMT -5)
After biopsy in late January and immediately making a knee-jerk decision for RALP to "get this thing out of me", my education began in earnest. I still feel so ignorant, but know that I am definitely better informed now even if it only means that I opened my eyes and mind to other possible treatments. I had tentatively scheduled the surgery for mid-March, which was 6 weeks after the biopsy but because of other important tasks I am working on, I talked with my surgeon at Mayo at Jacksonville and got his OK to postpone until May. My thinking was that would give me time to complete some projects I'm working on and also allow time to educate myself better about prostate cancer in general. Fast forward to March 27, 2017 and I have arranged for Mayo to send my slides and pathology report to John's Hopkins for a second opinion. Because of the good and knowledgeable people on this forum, I now have an interest in looking into SBRT, PBRT, or even possibly one of the Brachy therapies, although that is what I have read the least about so far. I'm a pretty fit and healthy 69 year old with no other health issues and although I'm quite confident that I could tolerate and recover from the robotic surgery, I really am concerned about the resultant QOL issues. My question is this: I have a favorable intermediate risk diagnosis. My surgeon gave me the OK to wait until May to do the surgery, but I am wondering if I decide on a different treatment modality, how long would it be before I could get that done, particularly since I'll have to go to a Dr. that I have not seen to date. After deciding on the treatment, I have to find an appropriate Dr., then do whatever preliminary testing is required before the procedure can be done. I know no one here can speak for a Dr. and their scheduling or policy on timing, but what some here may be able to comment on is with a favorable intermediate risk diagnosis, how much urgency is there to getting the treatment started and completed? Does prostate cancer with my path info (in my signature) generally progress so rapidly that would be putting myself at more risk if I have to wait another month or couple months to get on a treatment schedule? Or am I asking a question that only a "swami" could answer with any certainty of being accurate? I'm definitely not trying to put anyone here on the spot and if I'm asking something for which there really is no definitive answer, just say so and I'll be good with that. All the information I have already received here is valuable beyond measure and I appreciate it so much.
Posted 3/27/2017 9:43 PM (GMT -5)
No rush. NCCN now even lists active surveillance as an allowable option (although not the top option) for favorable intermediate risk PC. Taking several months to make a decision is no problem.
Posted 3/27/2017 9:53 PM (GMT -5)
Thank you for that information TA. That's a relief. Now I have to continue my education, make lots of calls, and come to a decision.
Posted 3/27/2017 9:56 PM (GMT -5)
While you have some time to do more research and consulting, my opinion is that you do need to have some type of interventional treatment.

From what I read, age 70 is often a dividing line for recommending surgery. I would not have surgery at 72, and I consider myself otherwise very healthy.

The recent study results about SBRT look very attractive in terms of "cure" rate and low side effects.

Never let a surgeon persuade you into something you aren't totally convinced is right for you.

Good luck.
Posted 3/27/2017 10:42 PM (GMT -5)
ASA
I definitely intend to have some type of treatment and I agree that the SBRT does look very appealing from every perspective. I haven't researched specific SBRT facilities and/or Drs yet but there is an MD Anderson facility in Jacksonville, the Moffitt Cancer Center in Tampa, the Dattoli Cancer Center in Sarasota and I'm sure others in Florida. The PBRT also is attractive and I have the UF center in Jacksonville that is fairly close to me, but the length of the treatment is a significant negative. Obviously, I still have work to do to make an informed decision. Thanks for your comments and I totally agree with you about not letting a surgeon put the heat on to do something that ultimately can be such a life-changing decision and possibly a huge mistake.
Posted 3/27/2017 11:10 PM (GMT -5)
In your place I'd be doing a lot of checking on SBRT. If it had been an option for me at the time, it's the way I would have gone.

I think that's a great option to consider.

Andrew
Posted 3/27/2017 11:37 PM (GMT -5)
You're in Florida? I recommend you talk to Debra Freeman in Tampa for SBRT, John Sylvester in Lakewood for LDR brachytherapy.I can't think of a good HDR brachy doctor in Florida. Vipul Patel is the famous surgeon in Orlando. I can't think of a reason to prefer a long course of IMRT or PBRT, but UF Jacksonville would be fine for PBRT if that's what you want.
Posted 3/28/2017 7:50 AM (GMT -5)
19 - I've probably mentioned in your other threads, but I'm about the same age with similar pathology, although mine may be a bit lower risk, as I had only one core of G3+4, the rest being G3+3. After a couple of months of very emotional reading, learning and discerning, I chose SBRT. My reasons were probably similar to yours - I didn't want surgery; I was close to 70; I didn't want a long, drawn-out treatment plan, and so on.

I was down to either seeds or SBRT, hadn't learned much about HDR brachy, and was just a bit afraid of that procedure. I met with two SBRT RO's. One was really good. The other was really GREAT. The rest is history.

I have had only a couple of rough spots through SBRT. First, I found the fiducial marker implant process uncomfortable. Just uncomfortable -- about 10 minutes of breathing through clenched teeth and then it was over and no residual pain or any after effects.

The treatments themselves were a non-issue. about an hour in total, most of which was spent lying on a narrow bed listening to good music while the machine did its thing.

After treatment, I had some radiation proctitis (painful, unpredictable bowel movements) and some minor difficulty urinating. The proctitis resolved without medication or any intervention within about a month. The urinary issues were resolved with about 6 weeks of Flomax. Both of these are very common side effects of SBRT, and really didn't affect my life style. I still went to work, the gym, traveled, . . . you get it - I just went back to my regularly scheduled life. I had some fatigue, but not anything that cramped my lifestyle.

The latest issue is some mild to moderate radiation enteritis. This presents as abdominal cramps that seem to move around the intestines - at least that's what mine feels like. This is not a common side effect, and in my case is probably related to my having irritable bowel syndrome for many years prior to treatment. My RO and I discussed the possibility that this could happen, but I still felt that I would rather take this risk than to opt for another mode of treatment. So far, this too can be resolved with oral meds, so I'm not letting it slow me down.

To make a long story short -- do check out the SBRT centers near you. This treatment has been found to be as effective as the best of the treatments for favorable intermediate risk PCa (HDR brachy), but is a non-invasive procedure (except for those fiducials).
Posted 3/28/2017 7:51 AM (GMT -5)
19Tar, I think you are being really smart re your approach. With your numbers it will likely not hurt to take your time and get this right. We are blessed with some great doctors in Florida and Allen suggested some of them. It won't hurt to keep your surgical appointment and take the time to investigate the other alternatives in the meantime. Actually that's what I did...ultimately canceling the surgery for LDR Brachy.

Good luck and let us know what JHU says about your pathology.

Jim
Posted 3/28/2017 9:08 AM (GMT -5)
You are doing the right thing by checking out all your options.

You can read what I went through by clicking on the link in my signature.

Best of luck to you!
Posted 3/28/2017 9:41 AM (GMT -5)
Gleason 6
I already have your journey memorized from previous reading... smilewinkgrin . Your story is partly responsible for stopping my charge to surgery and for that I am truly grateful. I appreciated your candor and explicit information regarding all facets of your treatment. That is a big help. And of course it also caught my attention immediately that you and I were both at Mayo for consultations. I am familiar with the surgeon you mentioned at Mayo although I am a patient with a different Dr. Thanks for your info and well wishes and I hope your future remains as optimistic as it has been.
Posted 3/28/2017 10:48 AM (GMT -5)
19-
I applaud your decision to explore all options. I didn't look seriously at radiation. That said, I have no regrets about surgery, other than the complications of bleeding and clots. Now I feel fine, but the first couple of weeks, I wasn't feeling that well.

I've followed this forum closely since surgery. I'm just a guy who likes knowing as much as possible about my condition. Now I know radiation is a viable option for intermediate risk patients.

You are at an age when you should evaluate non-surgical options. I was 66 at diagnosis. If I'd been a few years older, the idea of not having surgery might have pushed me to do more due diligence about radiation.

You sound like someone who will reach an informed decision.
Posted 3/28/2017 1:15 PM (GMT -5)
I had the same apprehension about surgery as you did. Researched for 2 1/2 years before finally deciding on Dattoli in Sarasota and traveled from Michigan for treatment. Just completed my 3 year checkup and celebrated another ZERO. You have a lot of good options in Florida. Take your time.
Posted 3/28/2017 5:03 PM (GMT -5)
Hey 19

Good luck in selecting treatment. I passed on RALP and went the Radiation Route.

You might also want to check out Proton Beam Therapy. It's a hassle if you have to travel. Treatment is Covered by Medicare. One caveat. If your Medicare Part B is covered through private insurance, you might have a problem getting the private insurer to pay for the Doctors.

I would have considered this if there was a center close by.

Al
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