39 years old diagnosed today

There are salvage options for SBRT.

I would base my primary treatment selection on salvage options. Your case should be curable with any primary treatment. In your place, I'd just do SBRT and not worry about what happens if that fails.

Contingency planning has it's place, but too much can paralyze

Andrew

Good luck, man. I'm 46 yo, had RALP and don't regret it. I wouldn't have know I was a GS 9 without it. I knew the risks and was willing to live with them. I've said before, I'd rather buy incontinence pads than a funeral plot.

Hi Frosty:
I have some experience with the UM docs and info that I can share. Will shoot you a note.

Frosty - I think 19tarpon put it very well. I, too, would be happy to share even the "personal" details of my prostate cancer and SBRT journey. I don't post an open email address, but if you have one in your profile, I can email you directly (and you would then have my address for reply).

None of this is fun, but I can say for certain that if I had to do it all over again, I would do it exactly the same way. No regrets here.

P.S. I think you raised the issue of salvage options earlier. Let me ask the question this way. . . "How much of a backup plan do you need when the success rate of the primary treatment is about 97%?" Current 9-year research stats for SBRT are just about that for low and favorable-intermediate risk patients (like you and me).

Hello Frostypro,
You have received a lot of good advice. AS advocate mentioned many men regret having the Prostate removed. I understand where that logic comes from. There is another side of the story.

I was diagnosed at 42. My biopsy was all 3+4=7. I wish Inhad been diagnosed at 39. By the time I was 42, my psa was already 3217 and widespread metastasis. If you were in your 50's and had all G-6 I would be all over the A.S. Bandwagon but being not even 40 and having G-7 that is a tough call

Hi Frosty,
I'm one week post SBRT at Cleveland Clinic and happy to report almost no side effects so far. Just some mild burning when urinating that appears to be resolving itself on it's own. Everything else is working just fine. We drove 2 1/2 hours each way since no one in the Pittsburgh area was using SBRT for a PC. The drive was not a problem. Dr. Stevan's is focusing more on other cancers and I was treated by Dr. Tendlecar. I found him to be very informative and a pleasure to work with. If you want any details feel free to email me.

Frosty, it sounds like you're getting a decent landing. From what I've heard, Dr. Martinez is one of the great or near-great ones. You'll be in good hands. 6 months from now, you'll be looking back at a bump in the road of life.

Even so, consider hanging out here afterwards, you've got an important story to tell.

Frosty,

I was diagnosed when I was 41. G6 confirmed upon ORP and pathology at Hopkins. I chose surgery. It wasn't an easy decision. But as part of the conversation with my urologist and an oncologist at Hopkins, they both said that the only drawback from radiation is that if I were to develop another cancer that needed radiation treatment, the body could only take so much and being 41 with many potential maladies in the next 30-50 years of life, the argument made sense. Others might question this "argument," but it held my attention; particularly being adopted and not knowing any biological family medical history.

The side effects are real, but manageable. I never had any continence issues and with meds, sexual function has been great. After 5 years, there's often no need for meds as things have progressed back toward my pre-surgical abilities. My surgeon stated as much during initial consultations.

The only reason I mention any of this is that you mentioned exposure to radiation while in the service. Talk with the oncologist about that exposure as you continue exploring your treatment option. The only thing I'll say about surgery is to go one of the "big" places... Cleveland Clinic is one and UMich is another. I felt very relieved to have Hopkins in my backyard. Made the decision very easy...so to speak.

Good luck with your treatment.

Post Edited (dude1969) : 7/12/2017 1:33:17 PM (GMT-6)

No surgeon has a 97% continence rate, not even the best at Johns Hopkins that keep the best records. How is he defining continence? Many define it as not needing more than two pads a day.

As to a 50 year versus 20 year fix, that is a ridiculous statement. At your risk level both the surgery and different forms of radiation therapy are basically equal for cancer control. Both are effective but neither is guaranteed.

Radiation will treat a larger area than surgery can cut out. This is important because you appear to have at least one extensive core and the suspicious area of the apex. The apex is a tough place for surgery as they have to leave some tissue there. This can be one of the most common areas of recurrence for surgery that would then require radiation to fix the failed surgery.

Frostypro said...
Just a quick update. 2nd opinion from Epstein back finally after some communication issues. Looks like a confirmation with very slight downgrade?? Probably won't change treatment options/decisions. Fist pump anyway!!

Excellent news!

@frostypro, glad you're here.. sorry the circumstances.

There is so much to say and think about but one thing is really clear. TAKE YOUR TIME, you are low intermediate risk and have all options available to you at this point (not that all are recommended) so taking the time if you can to make the best informed decision and then the one that you are most comfortable deciding upon is a luxury you should embrace. I'm fairly certain that any of the doctors has probably said you have time, many months to make the decision and take action. It will really help to get your mind around it, feel stronger about your decision and plan what your recovery period is going to be like. Having your mind in the right place going in and coming out is extremely important to overall recovery.

I was 46 when diagnosed and ended up doing surgery last year. after a TON of research and visiting several locations around the country for HDR, surgery and brachy therapy. Stanford, UCLA, Hopkins, Sloan NYC and UCSF (where I ended up doing the surgery) I'm west coast based.

In the end, I went with what the first uro/onco said, which was surgery. But, I went with a different surgeon at a different location for many reasons.

Having met with HDR, various surgeons and a brachy specialist, here's an unexpected result. they ALL recommended doing surgery.

At this point, about 11 months post RALP, I would say Im at 99-100% continence and 97% potency. I know my body is working on the last 3% for the ED.

As others have noted, anyone either a dr or patient who says they are at 100% post ANYTHING are simply not thinking about what 100% means. I think of 100% to mean, 100% of exactly where I was prior to any treatment. Frankly, after doing anything id be surprised if anyone here will say they are at truly 100% of either category. I know I'm parsing details here, but nothing will be EXACTLY the same.

surgeons and others will define 'continence' to mean, no leaking, no dripping, no use of pads, etc.. that's great and where we all want to be - and I'm there and was there about 3 months post surgery. but, I know something is different. urination is a bit different, a bit more shaking after, I know the a lot of caffeine and or alcohol CAN impact the relaxation of the pelvic floor and introduce some risk. Now, this will probably change a BIT over more time, but at this point it's something I know the BACK of my mind thinks about. I question if anyone who is even years post surgery or other treatments doesn't have a similar experience at random times.

Similar can be said for ED. a uro will define this about getting and maintaining erections for successful penetration and sexual activity and maybe a bit about endurance and then hopefully, the ability to orgasm, etc. But its DIFFERENT so in the world of 100% its just not going to be exactly the same. From a surgical standpoint, well of course there is no ejaculate anymore. That's a thing. Dry orgasms are different. They are totally fine and very pleasurable and as the running joke goes, "no more wet spot!"

At this point now 10.5 months post RALP I'm all good in all those areas and VERY happy for that. All elements are pretty much back to near pre-surgery abilities, but it's things like nocturnal tumescence and morning erections and spontaneous erections that are different. These were some of the things that were LAST to recover (and many don't have full recovery of those areas, especially older surgical patients) but again, it's DIFFERENT. So, that's why I say I'm at 97%, and as I've described what I think to be a true apples to apples comparison, I don't think achieving 100% in that way is the objective.

Most would put the immediate and long term eradication of the cancer as the top priority (but after speaking with many surgeons, alternative treatment specialists and patients, you'd be SURPRISED!)

Then trying to achieve a clinical definition of continence as 2nd, followed by again a clinical definition of potency third.

The best thing I can say about my experience with the process and my decision on the surgery at this point is, most days I dont even think about it.

I have a tremendous amount of research material which I am happy to send you (2015/2016 research and meta analyses) as well as my path through the myriad of options.

I'll ping you with an email if you have one on file.
paul

Post Edited (paulmerc) : 7/18/2017 9:47:39 AM (GMT-6)

Well... my decision is finalized. Flying out to Dr King for SBRT. Every communication with his office so far has been smooth, fast, and crystal clear. No issues with insurance. Appointments, hotel, flights, and car booked for September.

Monday - Fudicials, CT, etc.
Tx: Thurs/Fri, Monday, Wed/Thur

Thanks to everyone that has reached out to me with thoughtful words of advice and taking the time to share your personal experiences. It's been a tremendous help to have this place of support and reference when feeling lost.

I'm thinking I might as well pretend this is a planned SoCal vacation, in which it just so happens I get to knock out my treatment of choice while I'm at it. It's a bit more out of pocket as opposed to my alternatives but not bigly. Maybe I'll finally catch my big break and get discovered for the big screen. Yeah, that's it!