Hello - I'm post SRT, 10/31/17. --- PSAs --- .19, 3 weeks later.25 --- regional - SVI and staged at pt3b stage.
Respected RO/MO want this scan now - I have a competing health issue, bypass surgery 3 yrs ago --- but recovered fully - now 67 - The Axumin mfg says doing the scan at a lower PSA, (1.76) will yield less accurate results, the higher the PSA, the better results. I actually am grateful about the bypass and HA, as a new man, heart-wise that is. Then 1 yr later this hits me - totally active but QOL kinda stinks with this cloud over my head, but if you are reading this, that cloud is with u 2, my PCa brothers.
My concern is obvious --- u put anyone one of us under the spotlight scan, it will find something and the finding is another worry. I think I'm OK with the scan at the right time but is it at .25? Will be talking to both the Dr's but thoughts from this team really factor into to what I will do - I'm also big on nomograms - my Dr. could care less about them ( the RO )
When I had my HA, I accepted my mortality but want the rest of my life to have less worry in it.
Thanks for any comments/guidance u might be able to give me.
Best to all --- Ken
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My MO and one at UCSF had me do GA68-PMSA. The thought it would be more favorable then Axumin. At 1.77 it was successful in finding metastasis. You may want to research that. Best to you.
The question is - what will you do differently if you find something with the Axumin scan or if you don't? You've already had SRT, so if that included pelvic LNs, there's no more radiation that can be done in that area. Metastasis-directed therapy is controversial - no one knows if it accomplishes anything and it opens you up to more radiation toxicity.
The problem with Axumin scan is at this low level, it has a higher likelihood to miss something...There is the Gallium PSMA Pet scan that is more accurate at lower level. At your levels, the PSMA scan is more likely to discover something... if insurance says auxumin scan, then consider waiting....in the meantime, I'd exercise daily, lose weight, cut out red meat and cold cuts, go mostly plant based diet... Are you on a statin drug?? If you end up on this hell ship, then begin doing some of the things that some of the people who have survived this for some time do on a regular basis to try and help their disease....maybe it will help you now....
Hi Fish - I have been on a statin for about 3 yrs since my HA --- Have had no issues at all - sure did work well for me - did u have issues being on one? I have a friend that also had issues...
I am on Atorvastatin 80 mg....not a problem for me...with my mostly plant based, low carb diet and exercise, I am interested in seeing what my HDL and LDL are doing....lately, it's all about LFT's, PSA and T....Hope all is well with you, amigo... Thinking of taking a fishing expedition to NY to see you and Dayatatime in the summer if you are interested...
Fish - the same statin for me but at 40 mg --- pre HA cholesterol was 208, now 150 in total, below normal, but the cardio ( saw last week ) says no worries on that.
Would defiantly like to fish with u --- where r u located again? Do u like saltwater fishing --- we have a home in Cape Cod - every morning, make the coffee, hit the outside shower and on our beach ( 3 jetties ) our beach -- small bass 15 to 22 in, light tacket and love it. If u prefer fresh after we could plan to hit a lake in the Adirondacks and do some bass and pike fishing...
btw --- when I was in SRT and ADT, Ts went down to 21, and PSAs undetectable for about a yr. Once off the Lupron, got the .19 and . 25 PSAs ---- T levels jumped back to 421!!! but still no libido. Not that I was a stud at 67, I did have some interest... after RP, was able to an erection, not one to brag about but all lost since SRT.
I am located south in WV, but the fishing sounds good...I have a couple of surf rods and light tackle also... as for the erection, several people have gone with implants here...similar to you, I could get one but nothing to brag about...it is another thing to discuss with MO--haven't tried the vac system or anything else.....been too focused on getting my regimen right to fight the beast...Thankfully, the wife understands...
Following up on Tall_Allen's reply, I think you should ask your doctor what his experience is with treatment based on this scan, at this point in your PSA progression. He may say that he's hoping it will highlight a single tumor outside the radiation field of his previous treatment and that he's apparently cured X number of patients in your circumstances - the larger the X the better.
On the other hand, if he says he doesn't know what he'll do, he just wants to see the scan result and then think about it, or if he says he's never cured anybody in this state but he's hoping you'll be the first, well ... that's not a highly confidence inspiring answer.
Thanks, Alan - I plan on talking to the MO since I have several questions - I'm not going blindly into another scan, more toxicity unless I understand fully what the steps would be after the test.
I’m another pt3b (gl9) patient. The questions asked by others here are good ones. I had axumin at Psa of 1.2 which found a bone met. It’s not accurate at your current Psa level. But after SRT I used MRI to find hot pelvic nodes when Psa was 2.3. That was before axumin was available. If your pelvic nodes weren’t zapped with SRT that could be the next location for PCa as mine was with pt3b. It makes sense to radiate the pelvic nodes and imho ( as I’ve done) to hit any subsequent oligomets with sbrt. I’m no MD just relating my experience.
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