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Sodium Floride bone scans and my update

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Posted 3/14/2012 2:22 PM (GMT 0)
I noted in a previous thread that I was soon to start Ht despite my PSA being "Only" 1.7 because of my fast doubling time and the quickness in which I failed Surgery and RT. But I had to do my scans first.

The bone and CT scans were clean. But then my Oncol had me do a sodium floride bone scan. A relatively  new enhancement to the typical bone scan that is covered by insurance (Aetna at least) only in recurrent PC patients that have a clean traditional bone scan. Apparently it is able to pick up METS much sooner than the traditional scan. Well ......you guessed it, the scan was positive. I am waiting to hear the details as to size and scope of the tumors and their location. Suffice it to say, I will be getting my HT shots very soon. Dont know yet whether I will continue with the intermittent rout or go with a longer treatment. I hate this waiting to hear from the doc (but in fairness, he called me last night and I wasn't around, so he gave the short version to my wife, I have called this am but am waiting to hear back)

So for those of you dealing with the "when to start HT" question should ask about the sodium floride scan.

I have graduated to a whole new level with the METS. Can't help but feel that my clock is ticking and nothing I do can slow it down.  

Posted 3/14/2012 6:56 PM (GMT 0)
Hi Keeping Faith,
Do not be that pessimistic before seeing the effect of androgen deprivation treatment. Add to that that many new treatments are being developed as we speak and some (very effective ones) are already FDA approved.

You are too young and have many years ahead of you. Be positive and keep the faith. Wish you the very best outcome.

RalphV
Posted 3/14/2012 7:07 PM (GMT 0)
Sorry about your positive met test, not the way it should have been. But you still have lots of reasons to be hopeful at this point, even if it means the trip down HT Lane. Good luck.

david
Posted 3/14/2012 8:18 PM (GMT 0)
Hang in there brother, your medical team has a full arsenal at their disposal and there are new drugs in the pipeline.
Posted 3/14/2012 8:38 PM (GMT 0)
Man I am really sorry to hear this. As you know I have been going through the F18 clinical trial at the NIH. I think there is definite value in the scan and PCa, but I am saddened that it proved positive for you having mets. Please come back and tell us what the doc has to say about their location, size, number and so forth.

Another view on it though, is at least you know you are attacking something with the HT and there is a reason for your PSA rise. Although there is probably little comfort in that.

Best to you brother,

Sonny
Posted 3/15/2012 12:26 AM (GMT 0)
I spoke to my Oncol, the cancer cells were found in a number of locations. If there is good news, its is that my bones "have not reacted" yet to the presence of the cancer. As was described to me on the phone, the traditional bone scan shows the growth of bone tissue from the cancer. The Na (sodium floride) scan shows the actual presense of the PC cells. They looked at my results closely and see no evidence of bone tissue reaction yet , so there is no tumor size to report. (I'll get more detail on location and number when I see him in person in a week ) Since its just a matter of time before you get bone tissue reaction, it seems logical to start HT now. BUT (there seems to always be a BUT) since the Na scan is new, and I am not yet reactive, I am in a very unique position. There is no hard data to confirm that HT now is any better than HT later (after i have negative bone reaction and it shows on a regular scan). It just seems to make sense. So I'm a bit of a test case, we will do 7 months of HT and then do another NA bone scan and see what is shows, then we take it from there. I start Casodex next wednesday (am currently traveling and dont get home until next week.
Posted 3/15/2012 1:54 AM (GMT 0)
KF,

Thanks for getting back to us. I am glad to hear that they do not see bone issues at this point.

It would seem that between the two of us we are going to both be a test case on handling this rising PSA and using the F18 scan to monitor progress of PCa.

You are going to start HT now and I am waiting until my next scan in September. I have had multiple scans for the last year and a half (with a continuing rise in PSA) yet they find no evidence of mets. So I am of the camp on the wait until there is something to attack methodology.

I will look forward to your reports and progress.

Best to you brother,

Sonny
Posted 3/15/2012 2:00 AM (GMT 0)
Sorry to hear that the scan found some hot spots, but hopefully it's good that they were found so early, and I hope that leads to a really effective treatment.  I believe that the actual symbol for sodium fluoride should be NaF. 
Posted 3/15/2012 4:14 PM (GMT 0)
Just curious.

Without symptoms and as you said with no bone reaction, is the actual tx. any different? In other words, positive or negative, isn't the next step still HT?

Another question: are these new scans currently approved? I assume not since Sonny is doing a clinical trial? Also, where are they given? I know one location is in Florida. Anywhere else?

Mel (who has very similar stats)

Posted 3/17/2012 4:40 AM (GMT 0)

next step is still HT. Whether or not the HT is more effective in this relatively early stage than later when it shows on a traditional scan is an open question, but it makes so much logical sense. So the one impact of the new scan is that if you were on the fence as to whether or not to start HT because your scans are clean, you are much more likely to start now, since the bad guys have definitively escaped and latched on to your bones

As to insurance, insofar as Aetna, it was approved only for a patient who has a chemical reoccurrence and who had a Negative tradtional scan. So you need to do the traditional first. (I dont get it either, surely the work of some math wiz)

Posted 3/17/2012 5:04 AM (GMT 0)
While I am sorry that your scan didn't come out as you wished, I do wish to thank you for keeping us posted.

I am always perplexed why such scans are not being used on my husband (and others) rather than regular bone scans. It just doesn't make sense why he would have to be recurrent first, if they still feel the need to scan him every three months anyway.

Do you know where these scans are currently available?
Posted 3/18/2012 4:20 PM (GMT 0)
I did mine at Columbia University Medical center in NY. I agree on the non-sensical way our health care system works. very frustrating!!
Posted 3/18/2012 5:19 PM (GMT 0)
F18 Scans have been around for a while now. They are used for a great variety of reasons and ailments.

The problem is Medicare and then the insurance companies, do not regularly approve them for PCa patients. There are a couple of instances where they are approved and are viable, but not just through a regular course of treatment.

The clinical trial I am participating in is to prove the efficacy in finding even the smallest of changes to the bones in the case of prostate cancer. It is the hope of this trial and others like it, that success will induce Medicare and Ins. to start using it more readily in treating PCa. The issue is the cost. The F18 scan is much more expensive that the normal TC99 scans.

Just my take on it from the research I did in arriving at my participation in the trial.


Sonny
Posted 3/20/2012 1:48 AM (GMT 0)
Just saw the report from my sodium f18 scan. Not a pretty picture. Metastasis mainly on the right side from cranium, clavicle 3 ribs, femur and right knee. One left rib too. Oh joy"!!
Posted 3/20/2012 2:13 AM (GMT 0)
As one who is probably in the same boat, I am stunned to read this.

Does it impact your tx. at all?

Do you have any symptoms from the mets?

Mel

Posted 3/20/2012 3:03 AM (GMT 0)
I sent you an email

Mel

Posted 3/20/2012 6:23 PM (GMT 0)
thanks Mel. I'm on the road and my e-mail is acting up, so im having trouble responding. I get back on Thursday, will pop my first casodex pill, and then shoot you a response
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