PSA is creeping

I'm the daughter, my dad's PSA is creeping. Long story short:

PSA elevated and biopsy proved cancer. Had prostate removed about 3 years ago. All well until last summer, PSA moved upward; mind you, I don't think it ever went over 1.0, but nonetheless, without a prostate it was moving. He had 8 weeks of radiation to the lower abdominal area/prostate area. Level went down again (again, at a .3 or so). Just got checked again, it's at .6. Sooooo, they won't do hormones until it gets to around 2. He asked his doctor about the C-11 choline test and the doctor didn't have much to say.

Dad has taken it upon himself to research this a bit further and actually found someone who did this test and talked with him personally. The difference, this gentleman still had his prostate and his PSA had a sudden spike. He had the C-11 test and it found 2 positive lymph nodes. Those were removed, level is down.

I'm wondering if any of you have gotten this test, pros and cons, etc. My dad seems to think it will find whatever/wherever the cancer is, bones or lymph nodes (please God, the latter) even though values are still below 1.0. He has an upcoming appointment with Dr. Kwon at Mayo.

Any help/advice/discussion you can add to my post would be welcomed!!

Thanks David...I assume you're talking about Sonny3...I tried to do a selective search but can't find that particular C-11 thread, so hopefully he'll see this and respond and link me to that. Thanks for helping!

Thanks Mel! Yes, I would have to agree....the little research I've done and he's done, that seems to be the "go to" guy for this. I really hope he has some answers for my dad...it's just so frustrating to do what you assume are all the right things, but in the back of your mind, that stupid PSA just has to rear its ugly head!

Not sure if this will work but

https://www.healingwell.com/community/default.aspx?f=35&m=2924515

 

Here's a link to a short but interesting presentation regarding the C-11 Sodium Acetate PET/CT imaging that has been in trial down in Phoenix, Arizona with exceptionally great results. My understanding is that this scan costs around $3,000 as compared to the $7,000 for the other Choline product that Mayo Clinic has up in Rochester, Minnesota. It appears the sodium acetate may even be just a bit more specific in finding tumor development locations.

Link

Hi colbran,

I'm the wife here and DH let the PSA creep too. He had the c11 Acetate scan in Kansas.. closer and cheaper than Arizona. It found nothing. We were hoping to find a few lymph nodes to zap. He is now enrolled in a clinical trial at NIH. (NTC number in signature) Check it out or let us know if you have any questions.

Here is link to Sonny's thread--

www.healingwell.com/community/default.aspx?f=35&m=2906507

Best to you and your family. You found the right place for answers :)

Marie and Jim

Wanted to give you an update. Dad is at Mayo. So far today, he has had an MRI, and with the terrible weather and cancellations, he had the C-11 Choline as well. He is currently waiting to see Dr. Kwon and apparently will have the results of both. Because his PSA is still less than 1.0, Dr. Kwon wasn't optimistic about the C-11 showing anything. If it doesn't, then the PSA needs to get between 1.0 and 2.0 and they will repeat it. Nonetheless, my parents are extremely impressed with him and the trip has been well worth it.

In hindsight, a couple of things...when he had his prostate removed originally, tissue was biopsied around the prostate and found to be negative, so no lymph nodes were biopsied. Not a good move, apparently. Lymph nodes should have been biopsied regardless and therefore, he has been deemed to have had an "incomplete surgery".

Second, when the PSA increased 3 years later (mind you, it has NEVER gone back up to 1.0), the recommendation was radiation to the pelvic area because likely that was where the "cancer" probably was. Not a good move, apparently. This has been deemed "unnecessary" because the CT scan and other tests never really showed where there was "cancer", it was just assumed to be there since nothing else showed up.

Moral of the story (or, at least what feels to be the moral at this point)? More than 1 opinion when it comes to the prostate, and go big (i.e. Mayo). I don't think my parents hold any ill-will towards the physician/physicians who did the surgery, made the radiation recommendation, etc., because it doesn't do any good to have those feelings. Those things are in the past and now they move onward. Can't change what has already been done. They went with their gut the first round and second round, and now they're in their third round. As humans, we go with medical advice from those we deem to be the "best" in their field, which they did. Can't change it now. Luckily for my dad, the radiation went very smoothly and he had no side effects whatsoever....I believe he's way more fortunate than most in that regard.

I hate to say I'm praying for the C-11 to show anything, but if it would show SOMETHING, then he could move on with things....that's a tough one!

Sonny, I emailed you!! Thanks for getting in touch...I appreciate it!