What I have decided to do

Was up late into the night thinking through all my options and possibilities.  Here is what I came up with, my wife is 100% on board with my thinking.  If any of you think I am misdirected or shooting myself in the foot, please speak up freely.

The radiation oncologist wanted me next Monday to come in be marked for radiation.  Not.

I went to my urologist/surgeon's office and set up another PSA to be taken on Aug.11th.  I wanted it there because all of mine have been done there since last August, even drawn by the same nurse, and always at the same lab.  I want some consistency to make a decision and thought it wise not to switch labs in the middle of this.

I will meet with my urologist surgeon on Aug. 18th, to discuss the latest PSA, and to let him know about the two pathology report stories.  Didn't mention today on purpose, as it wouldn't prove anything, and didn't want any bias on their part.

I re-scheduled the "marking" visit with the radiation center for Aug. 19th, the very next day if it proves it is still needed.

My logic:

Post surgery PSA is sitting at .11.

Let's see what the next one shows (it will be at the 9 month mark), if it is still at .1 or let's say no higher than .15, then whatever is going on is going on super slowly.  If has risen much more, then off to radiation I will go with a clear consicious.

It will also give me a month to get other opinions, or another look at the pathology report, or both.

Salvage radiation is the 2nd bullet in our gun for surgery patients, and I don't want to waste it or use it if not really needed.  If I do, I won't have anything left if it ever comes back with a vengence.

Even the rad. oncl. dr. said waiting a month or two wouldn't endanger my case, so I want a little breathing room, I don't want to react to this out of either fear (me) or pressure from either my urologist or the radiation center.

I think this is a good compromise.  If it goes up some more, then so be it, then  I will be sure.  If not, then some "watchful waiting" after the fact may be in order.

I have made all the arrangements with the appointments, so this is it for me, for now.  I can only hope I am right in my thinking.

David in SC

This is pretty much the course that would appeal to me. My guess is that both of us are still at the point that the probability of treating when it is not needed is higher than the probability of not treating when it is needed. Personally, I worry about the possibility of delayed side effects from radiation. At the present
I feel up to confronting many issues like incontinence and ED, but I am not sure how I would cope if side effects popped up in the future. Perhaps I am hiding from reality, but I want to be fairly certain I truly need radiation before doing it. I think that with that viewpoint I will be more ready to accept whatever comes.

geezer, you and and I seem to be on the same page, scary isn't it? lol.

goodlife, of course it can be changed based on the reality at the time.

tony, this is the first time i have felt relaxed about my situation in weeks.

and for those that are curious, none of this makes me second guess my primary treatment, even the new rad oncologist said that he would have had surgery, and that radiation probably would not have worked for me on the first pass. he said what many of us know, that gleason 7 situations are fickled and can be very dangerous in disguise. when they thought i was a 4+3, he said you have to assume its acting more like a gleason 8 situation. he also said that had i put off my surgery by even a few months, not a doubt in mind that it would have been a strong stage 3 situation instead. so i am thankful there.

david in sc

The strategy you are proposing, David, is logical and makes sense. Taking a step back, as you intend, is the right thing to do, rather than being bounced into something you are uncomfortable with. This strategy puts you more in control.

I wish you all the best, Roger

David:

I believe you have a great plan with one exception.  Here is what JohnT wrote in your previous thread:

David,
Why don't you get a consult from a noted prosate oncologist. A phone consult could work well as you have all the data. You will get a good unbiased opinion from someone who is familiar with advanced PC.
JT

 

I totally agree with John.  It should give you some peace of mind and, frankly, it's certainly what I would do if I were in your situation.  It's great that all of us on the forum are agreeing with you but...we are not medical professionals.   Since your uro-doc is suspect at this point and you are actually choosing not to follow the advice of your radiation doc, don't you think it is wise to get this other opinion???

Best,

Tudpock

Tud, I am not opposed to the radiation doctor's thoughts or plans, just don't feel its high enough to committ to another drastic remedy without thinking it through. If it is indeed reaccurance, of course my only real chance is in salvage radiation. How would I find a specific prostate oncologist in my area? Not sure there is such a thing.

Thank you, ED C

Dave: Just a quick note to say I wish the best for you and will keep montoring your progress. Mark.

Sounds like a great plan. I will keep notes when/if I am in the same boat. Thanks for sharing! I still worry and have sleepness nightsas well. Sometimes I don't know who to avoid it.

Does Duke have a cancer center ? My urologist referred me to a prostate oncologist at University of Michigan. It did help me reaffirm the next step I should take, even tho I don't want to.

Hi David

I think that you are going for an early PSA reading in my last post I said that I had been looking at your PSA readings and what I was thinking that there must be a rounding up or down of PSA readings (I am new to all this so I am most probably wrong in this assumption) which on a 1 month reading could be very misleading an example is if your middle PSA reading was .104 the machine rounding down to .10 and your next reading was .106 the machine rounding up to .11 there could be very little actual difference of .002 and not .01 but your new plan will take care of this because by taking out the .10 reading it now gives you a 3 monthly comparison I hope this makes sense and like everyone on here I wish you all the best luck you can get

 

Collins, I agree with your thinking, one reason I insisted on this next PSA test.

Barry, thanks for your kind words, I truly hope you never need to think about a Plan B with PC.

SHU, would really be feeling at peace if I never had PC to start with, or if I didn't have a post surgery psa rising situation, but it is what it is.

Waiting another month to get some additional opinions and another PSA will make it easier for me to digest it if I have to have the salvage radiation. Least I won't feel like I am making a rash decisions either based on fear or pressure or both.

Thanks for your words.

Hi David:

Tempted as I am to join the bandwagon with "great plan", etc, blah, blah, blah. I will just nag you a little more and then shut up.  Let me see if I can summarize your situation with your current physicians from a dispassionate point of view:

1.  You have a uro-doc who doesn't know whether or not he spared nerves or not, couldn't read your pathology report and couldn't get you off a catheter until you made a suggestion that you read on this forum.

2.  You have a radiation-doc whose advice you have chosen to not follow...or at least put on hold.

So, at this point you are following no particular physician's advice, but have made your own decision which, according to us experts on this forum, is probably ok.

I maintain that, if it was me, I would indeed consult a prostate oncologist at this point.  I understand limited finances and the difficulty of finding someone close to home.  However, as Geebra points out, Duke has a GREAT prostate cancer center and is probably only 4-5 hours from you.  Back and forth in one day if you like....  Besides that, as JohnT suggested, there is the possiblity of telephone consults if there are no suitable doc nearby.  Anyway, that's what I would do rather than sitting around for another month.  Please don't get me wrong, I think your logic is sound...but I'm no prostate oncologist...

Tudpock