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Posted 9/26/2012 2:14 PM (GMT 0)
I seem to have some nagging questions... I guess I'm still at the why me phase of acceptance.
I'm having a CT scan tomorrow and a Bone scan the first of the week and then start HT immediately... I think they are a CYA thing, RadOn said he doubted if it would show anything.

First question is... do I want them to find anything on either scan? If they find anything is SRT off the table then? or could it be a positive thing to find something in the area to be zapped?

My second question is about doubling time... mine appears to be very fast... I don't have great readings to work it out but appears to be between 1 and 2 months. I've read somewhere that doubling time on reoccurrence is similar to dt pre-treatment. So was I just luckly to have been Dx'd at the 6-7 psa range, because I could very well be back to that point in a couple of months if left unchecked? Or am I working on incorrect information.

and third, what can I take from having a "0" psa after surgery. Does that mean something was "disturbed" at surgery or biopsy and started to multiply at that point.

I know the G9, DT, and early reoccurance are very bad indicators, the RadOn was quite honest to say he doubted the SRT would work but due to my age, and good health it was worth a try.
I've used the MSK site to get the odds (approx 20-30%... I don't have all the correct info so I'm guessing at some values). Well 30% seems better than nothing right now. Hey gotta have some hope... that's all that is keeping me going.

Just confused, I guess. Millions of questions and way too much information on the internet. Just need somewhere to vent I guess. Can't wait until the HT starts... I have lots of questions about that too.
Posted 9/26/2012 3:07 PM (GMT 0)
Here is my take on your situation and I am sure others will chime in to help out. G9 and rising psa is not something that you want to take lightly. But it is treatable and you are doing the right thing looking at all your options and their effects. Its not a matter of what you want as far as the scans go. It will be what it is and you have no control. But they will help you to decide what to do next. If the scans find something localized, it will help the RO know where to target. If the scans find that it is not localized (Systemic), then radiology may not be an option. Except to maybe hit some hot spots. The scans will also give your Onc. a base, so that it can be determined what the HT is doing.

Honestly, surgery is a very complicated procedure and the surgeon cant always see the cancer cells. Most are microscopic. So there are many reasons and chances that they may not have got it all. Sometimes, it takes years for those pulling 0 psa to have a rise. It really does not serve you any good to wonder why yours rose when it did. It is more important for you to use your time and energy to look forward-learn as much as you can about your individual stats and learn about the many options you still have on the table. Its kind of a process of elimination of whats best for you. Best wishes.
Posted 9/26/2012 3:35 PM (GMT 0)
Too Young, First I would just like to say that Startec gives you very good advice.

We are similar in many ways and I am a bit further down the road. I am a G8 and had an apparently successful surgery and then reoccuring PSA witin 12 months. Mine went to .28 at the 12 month mark. At that point I went through the same things that you are going through now, Bone scans and CT scans and MRIs. Then on to SRT with 12 months ADT3. I was also told 30% chance that treatment will offer a cure, but at my age (58 at the time) I had to go for it. The good news is that I am now 2 years post SRT and 14 months since going off HT and my PSA is <.01. How long that will last is anyones guess, but right now I'm a happy camper.

I did have a gitch with scans as they found a worrisome lesion on my spine. SRT was put on hold and would have been cancelled in favor of spot raditation and HT (cure off the table of course). Further scans showed that the lesion was not cancer and I proceeded ahead with SRT.

I would be happy to discuss with you further. E-mail me directly if you like. BB

Posted 9/26/2012 3:53 PM (GMT 0)
In your case, which is very similar to mine except I had positive margins, Dr. Mark Scholz would likely go for adjuvant docetaxel concurrent with radiation and 12 months of ADT3. That is what he recommended for me, although I couldn't find a local oncologist to administer the chemo.

Southern Comfort also had the same treatment plan from Dr. Scholz for his somewhat more complicated G9 case, except longer ADT3. He did go through with chemo and has given eloquent testimony in other posts.

Dr. Walsh, the famous surgeon/author, also mentioned in his book that Johns Hopkins also considers adjuvant chemo for very aggressive cases.

I just wanted to mention this in case you didn't know of this possible option. As for your doubling time, I'm not sure you have adequate statistics to calculate that at this point. You might want to wait before drawing conclusions based on what you know now.

Radiation is more likely to succeed if you had positive margins after surgery, as then the chances of local growth are greater. The cancer could still be local otherwise, but the chances go down. Still, without positive scans, it's a crap shoot.

One positive note: if you go on short-term ADT, your PSA will likely drop to undetectable and will remain there until months after you go off it. That will at least give you a breather.

Keep asking questions and we'll see if we can help.

Best wishes,
Nellie
Posted 9/27/2012 1:48 PM (GMT 0)
Tooyoung:

There is another option, there is a new scan out there than has the ability to find cancer in the lymph system.  It's called a Feraheme scan, at this point there are only 2  Drs. who are capable of referring you for the scan, they are Dr. Meyers and Dr. Dattoli.  The scan itself is done in Orlando Florida and it is expensive.  Basically this scan can light up your lymph system better than anything else out there at this point.  It probably will be able to pin point where your cancer is and instead of the SRT shooting blindly it would be able to spot radiate the specific area(s). 

I just returned from having the scan done and am awaiting the results, I had to pay for the fareheme contrast myself to the tune of $1500 but everything else was covered under my insurance.  Most everyone who has looked into having this scan done seems to be very excited about its ability, there are a few others on this board who have had it done and they might chime in with their opinions. 

The guy in front of me when I was waiting for the scan was from Cincinatti and the guy behind was from San Antonio with another guy in the waiting room from Hong Kong so you can see guys have heard of and are traveling great distances(I'm from the Seattle area) to have this procedure.

The reason no one else is doing this right now is this scan is considered "off label", its not FDA appproved for prostate cancer at this time but I believe that will change in the near future.  The Drs told me they will be releasing a paper on the results this November that will blow peoples socks off.  They have run over 700 guys through the scan at this point and believe they have enough solid evidence to bring it mainstream.

Google "Feraheme" if you wnat more information, also "USPIO" will give you added reading. 

Good luck

David

Posted 9/27/2012 2:19 PM (GMT 0)
David,

Is there a PSA threshold for the scan? I know the C-Choline scan done at Mayo works best if the PSA is > 1.5 and is rising quickly.

Thanks,
Nellie
Posted 9/27/2012 2:33 PM (GMT 0)
Rivere:

Dr. Meyers wants his patients to have at least a 2.0 PSA where as Dr. Dattoli doesn't.  I was referred by Dattoli and my PSA was 1.1, he felt like since I had SRT and 24 months of HT prior that the cancer would be easier to spot because it has obviously been there for a while.  I might start a new thread and go through everything that happened, Oncas had the scan also and I talked to numerous people who post on the YANA site to get a better feel for what I was getting into.  There have been a couple of guys who had a low PSA (less than 2) who went back and had a second scan after their PSA moved up a little and the cancer was then found so its a good point I believe that the higher the PSA the better chance of finding the little bugger.

Good luck

David

Posted 9/27/2012 2:35 PM (GMT 0)
P.S.  My doubling time is less than 1 1/2 months at this time.

David

Posted 9/28/2012 3:20 PM (GMT 0)
Thanks guys for the support...
David, thanks for the suggestion, it will be kept in mind as an option, but hopefully my Psa will never get high enough (gotta hope).

CT Scan done yesterday at 3, got the results by phone this morning at 9... all clear. My family doc called to tell me the news so I could relax for the weekend.
Bone scan next week...
Posted 10/3/2012 3:37 PM (GMT 0)
New Question... regarding bone scans...

I had my bone scan yesterday, went home and shortly after got a call to come back today for more scans... kind of troubling.
Meanwhile later yesterday evening my family doc called and said she got the report and bone scan was normal.

This morning when I went in the tech said she wasn't sure why but it was requested to do some 3D imaging of pelvis area.

So now my question... is this routine? the machine as best I could get out of the information was doing a CT+bone scan and took about 30 minutes. She said it "greatly enhances" the bone details to a much finer scale.
I haven't read of anyone else getting this done or did I miss something?
I can't picture this being any cutting edge technology.

Time to start worrying again... crap I hate this stuff.
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