Dad's PCa is back

Well... I don't even know where to start.  Some of you may remember from past posts that I mentioned my Dad's PCa coming back after 15 years.  Yesterday was the first consultation with the Rad. Onc. Back in 1994, when he had is RRP, thought it was over and done with. There weren't resources back then like there are today, and certainly no forums that I was aware of to pull info off of.  During our visit with the doctor, he asked me to request my dad's PSA score for as far back as I could go.  I called his old Uro's office and they supplied me with the following info which I shared with the Rad Onc.:

1994 -1999  <0.01

2000  0.16

2002  0.7

2003 1.0

2004 1.9

2005 3.3

2006 4.6

2007 6.1

2008 9.0

2009 15.3

2010 20.70

July 2010 .05 (due to Lupron) 

The 15.3 was found by his cardio doc and prompted me to take him to my URO which has definetely put him on the right track.  I was ignorant when it came to PCa back then and didn't understand it like I do today.  What REALLY ANGERS me, is that his Uro never told him that his PSA was going up! His lame brain doctors should have taken action back in 2000 - 2002!! All my dad knew was that he was told everything was ok and he was cancer free.  The Rad Onc. was also very angry that someone at the old office dropped the ball and said he sees cases like this all the time. Fortunately, my dad has no mets and all his scans were clean.  There is a 3.5cm tumor growing in the prostate bed next to the bladder neck, which is where he had a postitive margin. Doc said that he will be starting IMRT next week @ 70gy going for 39 visits.  He also stated that he is very confident that my father will pull through this like a champ.

I'm keeping my fingers crossed. He would have tolerated the treatment better 8 years ago... and for his old Uro's sake, he had better not have any issues!

As for me... recovery is going well... I'm 5 weeks post op today and totally dry for the last 4 days... WOO HOO. Just came back from my primary doc today who gave me the great news that I now have a hernia in the site where the camera was inserted...just my luck. It's small enough that I can deal with it in a few months after I get dad squared away.

 

Vam, am really sorry to hear about your dad's issues. Given my newly acquired impatience with fumbling, bumbling, make me wait docs, lately, I would have probably not been as kind as you have appeared to be.

Really hope your dad tolerates this next phase well and he can get on with enjoying life.

Glad to hear about your progress. Keep it up,

Sonny

This is just another example of why a patient needs to be his own advocate. Keep all of your medical records and don't depend on the doctor's office to tell you something. Get copies of all test results and ask questions if you are unsure. Things like this never should happen.
JT

vam,

it's a shame that your dad had a slacker of sorts over all those years. When his numbe went over the .10 mark in year 2000, according to what you posted, there should have been concern and followup from his doctor(s). Hard to believe that it kept going up and up for ten years since. Yes, he would have been several years younger, and obviously in better shape to deal with a secondary treatment, i.e. radiation.

with those steady rises, its a miracle that he doesn't have any mets at this time.

not blaming you, or any of your careteam or your dad, but John is right, each patient has to be their own advocate. no point in having all those PSA tests done all those years, if no one was paying attention to them (not trying to be insulting here). we all have learn as we go along with this. His doctor, would be hard pressed to come up with a legitimate reason that followup wasn't needed in your father's case.

i am no attorney, but you might just have a legit issue there with what is going on. probably wouldn't hurt to speak
to a good attorney that specializes in malpractice, if you feel up to going through all of that.

glad to hear that your own recovery is going well too. please keep us posted on both you and your dad. i hope he does well with the SRT, I can't remember his age for the life of me. good luck

david in sc

I agree that we have to be our own advocate when possible. Relying on the medical community which we have to do most of the time is not the best way to go. We have to use the medical community in conjunction with our own knowledge then we have some power. I am sorry to hear about this for your dad. At his age Lupron may be pretty tough, My prayers are with you and your family.

peace to you
Dale

Guys... thank you all for the replies.... David, I know your not blaming anyone.... if anything, I was young and ignorant back then when it came to this Beast... Dad always went for his blood work up and neither of us new better to actually ask for the PSA scores back then. Dad is 77 now, he would have been 67 when the PCa reared its ugly head again. I always thought back then (10 years ago) that once the prostate was gone, that was the end of it.

The only side effect from the Lupron he is having is hot flashes. I too am surprised that he doesn't have any mets given this long a time. Like I said.... depending on the outcome, I'll decide what the best route is to go...although at this point, it won't give us back the 10 years we needed to act on this.

On the other hand, I am a little envious of your dad in a way. I hope I can just forget about darn PC someday and just go for 10 years assuming all is well.

He had 10 years of no worries, no PSA anxiety, no family meetings, etc., etc.

And it sounds as tho the PC is just sitting there waiting to be handled by the radiation. Hopefully his bladder neck isn't involved.

Best of luck to both of you.

Vam,
I am 8 weeks from the end of radiation, and feel like I've stopped getting any worse. Not getting better yet, but the GP told me 2 months out was normal. The Rad. oncologist said no side effects were expected, but was wrong. I am waiting for my upturn.

My radiation is chronicled at:

www.healingwell.com/community/default.aspx?f=35&m=1756808

The fatigue has been the most evident issue, but I was also not yet continent after DaVinci, and had some setbacks there.

142.... I read your excerpt.... if I'm understanding this correctly, they did it without anesthesia??  My dad is going to be put under for his. Thanks for your input, at least I know what to expect when I take him home.

Thanks PostOp...  Yes, I consider my Dad very lucky that this didn't get out of control. I'm hoping that his discomfort will be minimal. He's been going through alot in the last 3 years... Mom's in the nursing home, so he has a tremendous amount of stress, and between the blood thinner's, and heart problems he has I'm worried about how he's going to tolerate the Rad.

A

Vam,

Yes, the Calypso markers were done without "putting me under" - I think being knocked out would not have changed much.
Question is, will they use Calypso markers, gold markers, etc. - some systems do not, such as those that do a mini-ct before each treatment. That will all depend on the equipment the radiation therapists use.

David has a point I've learned as well - the Rad. docs say that my issues are either left over from DaVinci, or just stress. My GP sees a lot of post-radiation folks day-to-day. He says I have classic issues (none really severe for now, it seems), and that they take a while (many months) to go away even in the best of cases. On the other hand a lot of men in their 70's (I met at the clinic in the daily time in the waiting room) had no evident problems at all, and said they felt great.

So we have to consider the possibilities. David has had a really rough go, I'm seeing a few months with too many trips to the WC, wanting to believe they did it right, and others walk away whistling and happy.

And I have the prospect that if something does go wrong, it may be years off in the future. (I'm 57)

As always, we hope for the best, plan for the worst, and more often than not land in the middle somewhere. As everyone will remind you, the ones of us here everyday are not representative of the "best results" category.

Just as a point of information, the latest and greatest radiation treatment machines are called "Varian Triology RapidArc". These machines require no markers to direct their precisely focused beams and they can safely deliver a slightly higher dose than the older equipment that is in general use today..

The downside is only the biggest hospitals and treatment centers have them and the machines are very expensive to buy and therefore being treated on one can be very expensive. Make sure the provider gets pre-authorization from your insurance company..Also be aware, most Medicare plans only cover 80% of the cost of radiation treatment so you might want to find out in advance what your co-pay will be...

Thanks friends.... I'm actually with him right now waiting for the doc to put the markers in for his IGRT. Poor guy has been without food or water since midnight last night. Going to the diner after this.