Frustrated...Checking In

It's been a while since I posted because I just needed a break. I took the break and pretended for a while that prostate cancer doesn't exist. Well, one trip to the urologist will slap you in the face and bring you back to reality. Bob went in today for his every 3 months PSA. This was one year post op this month. We do not have the PSA result for today yet, however, our usually optimistic everything's fine doctor says today "We're probably looking at radiation sometime in the future. Start gathering up your info from your gastroenterologist from your last colonoscopy so I can have an associate I trust look at what his reports say. (Bob's gastro doc has stated to hubby that his colon WILL NOT tolerate radiation to the prostate bed). Bob had prolaris test ran in Sept. which found that with his numbers 80% of men w/ his numbers had a less aggressive cancer. I don't know if this new attitude stems from the prolaris test or from the rising PSA or both. He usually says his PSA will level out at around .1 and probably start going down but he hits us w/ this new attitude/news today. Bob is in fear of radiation. Just was not a good day. Will post here when we get the new PSA number. ~Miki

Do let us know what the test results are.

Sadly, if this test is above .07 SRT is a likely prescription. RT can upset the bowels and you'd need a very good RO to deal with it. Likely it's just something left over in the prostate bed. Newer studies suggest that SRT is needed if you've gone from 0.00 to over .03. A confirmation of the rise would be a case for further treatment based on these new studies.

Andrew

Prat - look at the PSA history. From .0 to .07 in less than a year. Stead rise above .03.

Justified concern that needs a closer look.

Some docs here would already be making the RO referral.

There you go Niki - comforting thoughts. Sorry, but you still have plenty of options, even if RT doesn't work out.

Hang in there,
Andrew

Please strongly consider a nationally/internationally recognized facility like Mayo, John Hopkins, MD Anderson, etc. I'm having SRT at MD Anderson and so far (today is treatment #25) the only side effect I'm having is being tired in the afternoons. The IMRT techs run 15-20 patients a day through their Varian machines - they are highly experienced.

Good luck--I do hope the issues with the colon can be managed. Certainly not my area of expertise, but perhaps TA or another member here has some ideas.

Miki, just a question, I'm not sure if it matters at this point but maybe it does/would affect secondary treatment....

Gleason was downgraded to G6 after surgery and yet PSA went to .1 in a year? Even with the positive margin, that's curious to me.
Did you ever think of getting a second opinion on the surgical path, like you did on the biopsy?

PS if it is indeed a gl6 perhaps, considering the colon, you might want to go HT without radiation. I would get a second opinion from an oncologist totally away from the present medical environment. And if you do, know this, if the medical team at the new institution, senses from you a state of panic...doom,etc, they will, even if they think otherwise, will proceed the wishes and message that you send. Its called the liability factor. 2 things above and beyond the Hippocratic oath reign in todays paradigm...profit...and...protection from liability. We all see it everywhere in every institution regardless of the institutions field. Its the 21st century...it will get worse before better... but it assuredly will get better. Im just thankful I don't have to worry about sabertooth tigers. What is going on is navigable...but you have to be original...smart...and de liberate its called freedom... Good luck, Miki

Oh my goodness, Miki, what a stressful dilemma you are in! You have been here long enough to understand the potential pitfalls of botched RT.
Suggestion: take a breather, get your team in place and really talk to all fields of specialty before deciding. Best wishes, Miki. We are rooting for you and Bob!
Beth

Miki,

If SRT is of high risk for this situation, here is what I would do.

1) Get an Ultrasensitive PSA reading from Labcorp soon.

2) Start on a rigid diet and execise program.

3) Get a second Ultrasensitive PSA test 3 mo after.

4) If you can get a PSA doubling time below 48 months,
adjust the diet. I will help you with that if you wish.

If your husband will not follow a rigid program, it will not work.

@Bozolidat everything you said in your responses is spot on to what I'm thinking so I wouldn't pretend it's from someone else. No need. I agree. Can HT ever be curative or is it always suppression?
@Beth I've missed you!!!

I've been on the phone all day Arkansas Prostate Cancer Foundation, MD Anderson, Cancer Centers of America, Johns Hopkins, Gastro doctor, and Prat....All the medical facilities are adamant that a 2nd opinion from another gastro is in order to weigh the risk factor on the colon to make sure radiation would even be an option (not that it's definite if he can have radiation that he's going to do it) but that information is needed in the decision making process.

Of course I know if we just go into a radiation oncologist of course he's going to say it's no problem and to do radiation (because that's what they do). Not rushing into anything. I'm hoping with a .1 we have time to find out all options and information.~Miki

@Prat yeah, but you were in on my phone calls list because you were giving me info I needed for doctors so you count!!!~Miki

Miki, We missed you too, and I'm glad you're back. Just wish it was with better circumstances. It sounds like you are making progress toward a plan of action (even if the plan is no action for now).