Help with Questions

Joey,

Sorry that you must be here but welcome, man others have walked in your same foot steps ahead of you and is a wealth of information that can be found here.

First of all everyone is different, depends on age, degree of PCa, surgeons skill, ie #of surgeries done, robot versus open...the list goes on and on, and the results vary almost as much as the people on this site.

The fact that your doc has done 3k plus surgeries is a great plus!

Your age? Plays a factor as does your current state of health/activity.

For me I under went RALP on 11-12-13 and still am not dry and also still have ED issues, later under went SRT for 37 treatments over nine weeks, good news is the Cancer is now gone...but I also still leak and have ED issues....currently 50..... Now my little brother Ichabod just had surgery last month...and is Cancer free PSA less than .05 and has been dry since his cath came out and probably has already had sex too LOL, he's 48.

It just depends on the cards your delt and how they play out no one can predict the outcome, just be prepared for the worse and hope for the best. I know this doesn't really answer your questions but it's the honest truth. Wish you all the best, keep us posted.

Joey, my bx sounds quite similar to yours-3 cores, all 3+3, 20%, 5%, 3% involved. I had RALP on 2/17 (5 weeks tomorrow). I leak a little, but dry at night for 5-6 hrs. ED is a non-issue for me. It seems to me that the SE issue depends significantly on whether there were issues in those areas before surgery, and on overall physical condition.

It is a crapshoot, and with an existing ostomy, some of the radiation therapies may not be possible...but get an opinion from a radiation expert on that.

Sounds like you're in a place where good answers are available.

Joey, I'm not sure why you're not considering AS. Sorry if I missed something! As far as surgery goes and continence, the experience of the surgeon is crucial and you seem to have that nailed! Good luck!

Cheers, Doug

My main questions were:

Procedure - I did go and watch a video of a surgery - don't know if I will do that again, too much information.

Catheter concerns - will it hurt, when will it come out, what does it feel like, will it get stuck (I had never had one before)

ED concerns - how long until erections come back, what are treatments if erections never come back, will medicine help

Exercise - when could I start running again (I run about 100 miles a month), how soon could I get up out of bed and start walking

Going home - how long would I need to stay in the hospital, does someone need to stay with me,

Of course some of these were questions after I had already decided to have the surgery.

I printed off this list of questions and asked the ones I needed to ask and added my own:

http://www.pcf.org/site/c.leJRIROrEpH/b.5835175/k.B015/Questions_to_Ask.htm It is from the Prostate Foundation.

As a former teacher/principal, I approached it the way I approached many other things I did in education. I just wanted to be informed and make the decision that was best for me.

Hope this helps.

Hello Joey,


In your shoes I would ask the following:
For the surgeon:
- Am I a candidate for active surveillance? If so you would you do an MRI to be sure, with only 7 cores a higher grade cancer could have easily been missed.
- I'd confirm the 3000 count in a crowded room unless you have it from a very good source.
- Would you actually be doing the surgery or assisting?
- Will scar tissue from the ostomy be a possible problem?
- If you encounter scar tissue do you switch to open surgery or just stop?
- I would confirm they do nerve sparring surgery (99% chance they do but why get surprised later)
- How long will the catheter be in? (7 days is typical, I know of 1 person that had it 21 days)

For the Radiation Oncologist (RO):
Given my numbers do you support surgery, or think radiation therapy (RT) is a better choice? why?
Would hormone (ADT) therapy be part of my RT?

Make a note on how open they are. I went to 4 places and this ranged from one guy that said "I have the facts so I'm doing the talking" to the elusive one, to my team that had a jolly ole time telling me their successes and disappointments.

I tried not to duplicate too many of the great questions others have posted.

GW is highly rate for patient outcomes and the surgeon sounds like a great find.
I had RALP 11/2013 at a similar rated Boston Hospital with a great surgical team. I did ask the RO his opinion and he supported surgery.
It was not at all a bad experience, I didn't like the catheter. I was on Tylenol for 3 days and here a year later it is hard to find the little scars. Once the catheter was out at day 7 I was driving and spent time at the office. I was continent laying down the first night without the catheter. I got through the first month with 3-4 pads a day and by month 3 was finished with them which is fairly typical. With 80% of 12 of 16 cores at 4/5 (G9) the surgeon went wide and didn't spare anything so I cannot comment on ED.

I liked having it out and a pathologist looking at it and the surrounding tissue under a microscope. But that's me.

You will come to your own feeling about all of this, just keep asking the questions.
Study the signatures on the posts here and notice the time between being diagnosed and the RALP or RT. Weeks to several months is common. With PC you have some time to get comfortable with your decision and the team you pick.

I'm just going to jump in as another advocate for AS. You will see from my stats that I am very similar to you in age and DX. I am so glad I did not get surgery. Even my UR would not advise surgery for me at this point although he did originally.

I would do a couple things for sure...

• Get a second opinion on the biopsy ASAP
• Wait at least 3 months and get another PSA test

Because of your age and because of your numbers, and especially because of your ostomy, I think AS would be an excellent option.

You can't ask a surgeon about radiation, and vice versa - it's outside of their field. You can ask how the intrusion into the pelvic area might affect your ostomy, if at all. Sometimes multiple surgeries in the same area may increase adverse effects. I'm not saying it will, I'm just saying - ask.

I don't know if radiation of any kind is an option with your ostomy - neither do you, until you talk to some ROs such as the one I recommended.It may be that a rectal spacer is all that's needed.

LOL...oh dear, oh dear

Joey, I'll chime in with some others and ask why AS is not being considered? Your path stats are the same as mine were several years ago, and my last biopsy was negative. As a G6 with one positive core, T1-C, you would appear to be a very good candidate for AS. Yes, 57 is a bit younger than what some of the original guidelines recommended, but the various AS guidelines are expanding as more research is understood.

If you have the mindset to live with cancer, and want to avoid SE's, then spend some time thinking about AS. The research is showing that even if the cancer progresses, and intervention is necessary, the time spent on AS will not negatively impact the life expectancy.

Pratoman, when you say ask the % of positive margins what are u referring to.

Casper319. to quote Le Brock. Don't hate me cause Im beautiful…GUFFAW GUFFAW, YUCK YUCK SNORT SNORT, SLOBBER SLOBBER, BURP….AHH… hatter

Got back from the doctors, not a great visit due to my ostomy surgury is out, so are seeds. The only option is external rad. I just wanted this out of me but that's not going work. Anyone that has had ER would love to hear from you all.