Have any others had "clear" pet scans before the new one? And then Suddenly with the new test....metastasis appears!

[greatjohn]

I was diagnosed after closely (CLOSELY) monitoring my psa for about 2/3 years....and asking the doctor when he would do a biopsy. (it never went really high but kept going around 4 over the 3 years...) When we did, finally do the biopsy, I was Gleason 6. I had radiation and they said I had almost 100 % chance of everything going "peachy"...welll, alas, they were wrong. PSA kept climbing...very slowly and it was very low...but it never went below 2.0 (after radiation). Finally did bone scan about a year later and pet scans and all came back good...THEN did another biopsy and found cancer...gleason 7. I had HIFU (high intensity focused ultrasound~~at an out of pocket cost of 20K). After that my PSA still did NOT go down...THEN I had the new ultra-sensitive for prostate cancer Pet Scan done..and they found about 5 spots on bones of pelvis and about 5 lymph nodes in groin to be "involved". OUCH. I got here (at Stage 4) from what seemed like an unlikely "platform". Feel very unlucky some days...but I guess I'm glad they just got the pet scan approved and we found it had spread VERY early...so I was hoping that this "Stampede" type early HIT it with Lupron AND chemo ...right at the start...MIGHT be a "bright spot that will give me a few years of feeling .....normal?....again...LOL.

[gusgold]

Lupron and Chemo is a good choice....obviously the initial biopsy of G6 was not the complete picture...good chance your G7 is 4+3 which would explain the metastasis

Gus

[BigM62]

Sorry to hear your progression. But im 5 cycles into lupron + chemo and my PSA is already 0.3 and i feel like i did 2 years ago. My side effects beyond hair loss are almost nil. Im not even as fatigued as i was round one. You got this!

[Don1157]

We are hoping right along with you!

[bb66hotflash]

FYI, I can not get a PET scan at DanaFarber. It is only offered as part of certain clinical trials. I don't know what type of Doctor you are going to, but you should be using a Medical Oncologist if you are not. Pet scans are ten times more sensitive than regular Bone Scans and CT Scans. So a PET Scan will show many more lesions. When I pushed my oncologist, she told me, that I would light up like a Christmas tree, though I have more bone lesions from the bone scan, than they can count.

I wish you luck with the combo chemo and Lupron, Five years ago, this was not the protocol and I feel it would have added several years to my Overall Survival. You can go to my profile and see my treatment history for the past five to six years.

[ctarleton in reply to bb66hotflash]

If I recall correctly, the added Overall Survival advantage for the combo of ADT + early Docetaxel in the high disease burden cohort of men in the CHAARTED and related Trials was more along the lines of 17 months, rather than several years.

Of course, one's "individual results may vary". "Somebody" has to hold the spots way out on the tail end of the survival curves.

If anybody is going to Kick PCa's Ass, it will be bb66hotflash!!

[Hidden]

You know John, I think getting imaging is a pretty straight forward thing. Having a radiologist read it, is when it becomes arbitrary. As does some of our diagnosis and prognosis.

With my last three scans/imaging, I didn't have, I did have, and now I don't have mets. Now, I need to have them all looked at to determine the truth. Because last year, there was some disagreements between radiologists. In my eight years with this bs, I've gotten fucked at every turn. But, hey, I'm still here.

Joe

[Hidden]

I'm glad my doctor didn't rely solely on PSA tests. He found something suspicious with the DRE and sent me off to a urologist for a biopsy. My PSA at the time was 2.7 and not increasing at all from the previous year. Diagnosed with gleason 8, but bone and abdominal scans were clear. Only half of the prostate showed cancer. I opted for HIFU too.

[greatjohn in reply to Hidden]

I wish I could have opted for HIFU as my first treatment...I had to radiation because it wasn't available yet. Good luck ! ! !

[greatjohn]

Thanks,

Very fascinating. And my testosterone was checked every 3 months and stayed around 500. Seems like there is no easy answer. Just got to ride our unique "roller coaster"....until it's over.

John