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The PSA Test Waiting Game !!!

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Posted 9/13/2012 5:01 PM (GMT 0)
Curt,

If you don't call your Dr. and demand he give you the results, I'm going to.  The wait is even getting to me now.

LOL

Chris

Posted 9/13/2012 7:14 PM (GMT 0)
This also happens to me, I won't go into the litany. Suffice it to say , if I have the uro put me on as a "copy to" like he does to my GP. It comes in the mail within 48 hrs fm test.
Posted 9/13/2012 7:33 PM (GMT 0)
I called the Dr's office at 10:00 am and had to leave a message with the Dr's Assistant, it is now 12:30 and have not heard from anyone yet, of course, they are now on lunch till 1:00 uggggg...

Curt
Posted 9/13/2012 11:07 PM (GMT 0)
Ok, it is now 4:00 PM here in Seattle, I called my Dr's office again and they told me that they should get back to me by the end of the day....this is BS

Curt

Posted 9/13/2012 11:18 PM (GMT 0)
Switch to Bruce Dalkin At the Dub chief oncologist/urologist. google him read up on him look at his pic, a first class human being as well as above.
Posted 9/13/2012 11:36 PM (GMT 0)
Well, it is 4:30 and the Dr's office finally called me back, not good news, my PSA is now at 0.278 up from less than .1 in 3 months :-(

This Dr's assistant said that was a good reading, I said, are you kidding me, up from  <.1 to .278 in 3 months.....

This is the highest it's been since my RP

This does not make any sense.....

I have an appointment with my Uro tomorrow morning....uggggg

Curt

Posted 9/13/2012 11:47 PM (GMT 0)
uggghhhh....

Really sorry to hear about the PSA jump. I think I'd ask for a retest -- and demand to receive your results more promptly this time. What you've been through with this waiting game is inexcusable.

Hope you get a better number with a second test.

Jonathan
Posted 9/13/2012 11:49 PM (GMT 0)
I will see what my Uro says, seems almost imposible for it to go up that fast based on my history.

Curt
Posted 9/14/2012 4:08 AM (GMT 0)
Curt, I was hoping not, but I am thinking maybe the <.1 was a lab error last time.
Posted 9/14/2012 11:16 AM (GMT 0)
Hey Curt, I agree with Jonathan. Go ahead and retest and demand prompt response. If your Dr. cant comply, then find another. I can understand the staff not being as knowledgeable as us, but the delay in reporting is inexcusable and reason enough to search out new care.

Hoping the best for you and thanks again for the OKC suggestion. I may have found a keeper this time! ;)
Posted 9/14/2012 12:01 PM (GMT 0)
Sorry to hear of the jump. I'm a week ahead of you. When I got my first bad psa test last Friday the Uro gave me the paper work and to go right now and get it done and for me to email him the next day. I left his office in a state of confusion and forgot it was Friday. I had the blood drawn at 1230. The tech said it would be ready that night, so I emailed the doc. 930 that night he emailed me back and said the lab canceled my test because it came in within a few days of the last one. So ended up being done over the weekend. With him hopping mad at them... Caused some anguish for me over the weekend.
My point is to make sure you have the tech. that draws the sample to mark it a retest! It might save you some wait.
My Uro gave me his personal email (goes directly to his phone) with an open invitation to email and he will call me back as soon as he can. So far he has been good to his word.
Good luck!
Posted 9/14/2012 8:24 PM (GMT 0)
 

Ok, here is the continuation of my PSA Story.....

Had a meeting with my Surgeon/Uro this morning and we talked about the PSA roller coaster I have been on and this is what he told me:

First he said that he truly believes that I have no cancer because of all the factors in my case.

The reason my PSA went to zero was because the Avodart he put me on for 3 weeks had driven it to zero over time by shinking the prostate tissue he had left behind.

It takes a long time for Avodart to act on the tissue driving down the PSA, and then also takes a lot of time for it to get out of your system allowing the tissue to get back to its real volume, it has a long half life.

That real volume establishes what your real PSA would be if you have no cancer.

My PSA went from <.1 to 0.287 in 3 months and he said that it was the effects of the Avodart that wore off during that time, the tissue went back to its normal volume and will establish my new baseline.

He really believes that my next test will show that my PSA has leveled off :-) 

This all makes sense to me.....

Next, I told him how hard it was to get my test results and he agreed to put in my file permission for anyone in his office to give me my information as soon as it is available. No more waiting for me next time :-)

Well, that's it for now....input on this from anyone would be appreciated.

Thanks

Curt

Posted 9/14/2012 8:34 PM (GMT 0)

Well, that's it for now....input on this from anyone would be appreciated.

if it were me i would have a radiation plan in place and a line in the sand where i would put that plan into effect.

ed

Posted 9/14/2012 9:18 PM (GMT 0)
We do have a radiation plan ready to go and will pull the trigger if It looks like I am heading to .4

Always have a "Plan B"

Cheers,

Curt

Posted 9/15/2012 1:08 AM (GMT 0)
Makes sense to me too, Curt. Sounds like you had a pretty good conversation with your doc.

Good luck with your next test results, which should be available to you with no waiting. Sometimes it's good to be a squeaky wheel.

Jonathan
Posted 9/15/2012 3:01 AM (GMT 0)
negative margins can mean any bcr is beyond radiation range, something to think about in case you want to pull that trigger. Negative lymph node involvement can mean there is no bcr. Operative words here, " can mean ". No guarantee. I would really go with your Uro, on this one. What he says make sense. And if postop path is still Gleason 6, I believe you are in pretty good shape for the long haul, possibly HT, probably not. Don't join the post op over treatment bandwagon, if you do, do it with your head, not out of FEAR… For what its worth…..
Posted 9/15/2012 5:14 AM (GMT 0)
   I would really go with your Uro, on this one.

whereas i would be inclined to get a second opinion ASAP.  if we are dealing with BCR this doctor may not call it such until trimix is well beyond the .4 range. 

ed

Posted 9/15/2012 6:24 PM (GMT 0)
A second opinion, can never hurt, more data usually will enhance a decision. life is a beach. The gleason 6, if what they say about that score, is true, plays an important role in this… My concern is over treatment. Dr Dalkin from university of washington is a urological oncologist, i.e. prostate, bladder,etc. having said that, he operates from a protocol, more than I like. Ex. He told me He would be dissecting the right nerve bundle upfront, based on biopsy,thereby eliminating the tactile feel benefit of an open surgery. I am sure he did feel, but regardless, up or down on that feel, believe he went with protocol. I knowingly deferred to his knowledge on that. He did spare the Lt bundle and 2-2 1/2
years later have a pd5inhibtor aided stuffable erection. make your call with hope… and faith..
Posted 9/15/2012 10:38 PM (GMT 0)
Curt,

That doc is stringing you along so he can charge for the visit. Period. He now considers you a cash cow rather than a patient deserving respect. That should be unacceptable.

When I have my blood work done, I make sure my name and address is included in the CC box as well as my GP's. I get a mailed copy that shows the machine used as well as the test protocol. Oh, and I get the magic number as well.

My GP has joined the 21st century and has web enabled his office records so I can go online and download the report from him if I wish. The results are available within 24 hours.

If your doc is not aware of web enabled records, an integral part of a competent modern practice, how can you not suspect his competency and current skills in your area of interest? Has he not already demonstrated an antiquated, condescending, and callous attitude toward his patients? Are his skills equally antiquated?

Do not permit yourself to be treated like a cow. Nothing will change unless you do something about it. Start today. Don't make me come over there! Got it?

Jeff
Posted 9/15/2012 11:44 PM (GMT 0)
Hi Jeff- With my doc, I really am not being strung along. He is a very good person that has taken the time to explain options to me and does really care.

My case has been up and down and nothing has stabilized yet, so every 3 months along with my blood work we have a meeting about what is going on with me. We also talk about my ED and stay on top of that.

The only complaint I have is not being able to get my test results right away but that has now been address....

Thanks for you concern :-)

It is nice to have others care and looking out for each other..

Curt
Posted 9/16/2012 12:22 AM (GMT 0)
Curt,
I did not read your follow-up post saying you received your results and that the doc is now magnanimously giving his blessing that you may get future results if you call. Baloney! You mentioned above about how hard it was to get in touch with the practice. You should be getting results sent to your home or getting an automatic email saying "the results are in" and "click this link to receive your report". That's service! And it's free.

Look at your bill. I am wiling to bet you are being charged for that follow up visit.

Don't get sucking into a Stockholm syndrome like state thinking he is being nice because he lets you call for results. What about the other poor schlubs who have him for a doc?

Don't give up the good fight. It is important.

OK--- off my soapbox. Whew!
Jeff
Posted 9/16/2012 2:16 AM (GMT 0)
Hi Worried Guy- Yes, I am keeping up the good fight......I can now get my test results as soon as my Dr's office has them, anyone in his office is now allowed to release the information to me.

My Uro's office is working on becoming more automated, but they are not there yet....

Cheers,

Curt
Posted 9/16/2012 2:30 AM (GMT 0)
Look at this study to help determine what your trigger for SRT may be. It basically says that once BCR is established, that starting SRT sooner will give better results.

jama.jamanetwork.com/article.aspx?articleid=198392

I have been seeing DR. Stephenson at Cleveland Clinic.

According the test makers, anything over ".05 is considered BCR. Dr. Stephenson also holds to that number.
Posted 9/16/2012 2:37 AM (GMT 0)
That was handled with a great deal of aplomb. Nice!
Posted 9/16/2012 9:10 PM (GMT 0)
Well, I have to say that there is always an exception to anyones opinion or general rule.

I my case and since I am very familiar with it and truly believe I am dealing with a Surgeon/Uro that really knows his stuff, I will wait another 3 months to see what happens.

Based on all the information I have gathered and the opinion of my DR, I am convinced, that waiting for the next test in 3 months is a very good gamble....

If my PSA is very close to the same as it is now, then my case has established a new baseline for my PSA and I will have spared myself from SRT......

Hope we are right.

Thanks everyone for your input, it really does help....!!! :-)

Cheers,

Curt
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