Rare birds

For some reason I've been doing a lot of swimming in my head lately. Not sure if it's the time of year or if it's where I am in my journey. Could be both....could be neither.... not much room for swimming in this head of mine so I do many laps.

I spent some time the other day going over this journey from start until now with my wife. She has been mostly scared but very supportive....been with me every step of the way. Most of the time I try to keep the focus on PC at a minimum, especially now that my primary treatment is over. I try not to get into the seriousness of my Dx as when I do it seems to upset her even more.

As to not go into the whole long story like the other day....I have found by being here and following along now for 1 1/2 yrs. there are not too many here with my Dx... in fact each of us are "rare birds" unto our own. Not many have the same #'s.. the same treatment...the same time frame...etc....etc.
We are then put into groups. The G9 crew...the post toasties, the chemo group, the RP group,the SRT group the AS group and on and on. A small # have very poor prognosis.... some have very good prognosis. And the rest are somewhere in between...Point is we are all a bit different or a lot different. One thing we do know is...everyone here is dealing with PC in some way....Rare Bird's.

Now ...who are the rarest of birds in our group. Not to say any of us are more special than others but as I look at my case specific... I see a guy with low PSA, low fPSA%...High volume High risk G9 at diagnosis....not many here with those #'s. My primary treatment...HT 18 mths...IMRT 79gy 38 fractions and chemo....not many of us here with that treatment plan. There are a few that come close, but not many.

So....having said all that...I feel like a "Rare Bird" here. It's not fun being a rare bird! My drs. tend to put me into a larger group...guy's with high risk PC. OK...but my mind says, "yes but dr...I'm different!" Shouldn't we approach this differently than the run of the mill PC guy with high risk PC? ...... What about the low PSA. what about the high G9 volume. What about the fact that we REALLY don't know where I stand because I don't have a surgical pathology report! What do I do about the pain in my shoulder and neck I've never had before. How much am I not supposed to worry about each and every side effect I have from the treatment. RT side effects....Chemo side effects....HT side effects! What are treatment SE and which are PC symptoms. No one has these answers really....Not for very high risk G9 guys with low PSA who's primary treatment was not surgery. We are "Rare Birds" and it is tough.

Not looking for sympathy and really not looking for answers.....there are none....except wait it out from here on out..... Now there's a very large group I belong to.... and we are all very Rare Birds

Sorry for the long post....thanks for the opportunity to vent and thank you for your input....as always.

Battle On Brothers!!!

The Artistic One - Mark

Mark,

I wouldn't argue with your self-reflective assessment. I think that for serious cancer cases, the most important thing a doctor can do is to make sure the patient also understands the serious nature of it. It sounds like your doctor has done a good job...and your own legwork has contributed, too.

Have faith; we are in what's been reported as "the golden age" of advanced prostate cancer treatments...there have been many life-extending discoveries announced in the past decade, and the the PC mortality rate improvements are directly attributable to that.

Battle on!

Mark- you are correct. Each case is different. But you paint such a good picture with your post! You are truly the artist!

(Hey Mark - I don't stay real current with that account. I see your note, and I'll respond.)

Hello again Mark !.....love your post !!...good to see you here again.....in survival mode down here in Fl....battle onnnnn.............David