It’s been 4 years since my last contact with this site (though I view it daily). Over that time my PSA has been slowly, but surely, edging up. My history in brief is dx Dec2013 with PSA 5.1 G9Tb3 PNI ECE. Had 78gy of radiation therapy early in 2014 and 3 years on Lupron (finished Feb/2017). No treatment since then. Nadir was <0.3 in 2016 (whilst still on Lupron) and 0.3 eight month after Lupron finished. During 2019 PSA was 0.15, in 2020 went to 0.22, in 2021 0.31 to 0.61 and this year 1.2 (Feb 2022) 1.6 (4/May 2022). ALP’s been steady in the 60s. The doubling time calculators indicates DT at about 6 months. I am now 77.
I feel my latest PSA is now high enough to have a Ga68 PSMA scan but my Urologist says it is not necessary and he believes it would not alter the future treatment regime. He believes the cancer is still localised and starting on Lupron again at PSA 2.0 is enough. Would appreciate any comments on my options …. including any additional treatments or ADT options. Have meeting on Friday. Thanks
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Birdwood
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I tried Lupron but could not tolerate the SE. 4 months ago I finished Firmagon with a PSA of 0.3 & now enjoying time off, but who knows what is next.Only major SE was sore stomach were the injection went every month & brain fog etc.
Hi AriesJust read your 3 years of posts and replies. Wow what a story. Gives me something to work on, thanks. I am surprised I've got this far .... that's why I am getting worried. Cheers
On the day or around two hours after injection the area would be red & inflamed but would go three days after leaving a lump for around three weeks then that would disappear. Then time for blood test & do it again.There is a tablet form of Firmagon but is not available here for reasons beyond us mere mortals suffering from this disease.
Last meeting with the Urologist resulted in a bit of an argument. I mentioned to him 'when are you going to refer me to a Medical Oncologist' and 'solely using the Phoenix nadir+2 guide didn't make much sense to me since the advent of the Gallium 68 scan'. He hit the roof and said I was being insulting, he knows as much as a MO and I shouldn't put too much faith in info from Dr Google. My last PSA test was via my GP. I was hoping this Friday's meeting with the GP can be used to get a referral to a MO and the Ga68 scan. Are you saying radiation oncologist is a better direction to take than a Medical Oncologist? I was quite happy with the results from the original RO .... his treatment got me through the last 8 years.
Which kind of doctor is expert at what and what are each's biases, can be confusing. "To a hammer, everything looks like nail," so seeing the right specialist is important. Medical Oncologists specialize in maintaining survival in incurable patients. Radiation Oncologists specialize in using radiation for curable patients or palliative purposes. Urologists specialize in surgery for curing PCa and in dealing with urological problems (e.g., incontinence, erectile function). There are also Urological Oncologists who are medical oncologists that specialize in urological cancers (i.e., bladder, prostate, penile). Many are also surgeons.
If your cancer is still localized (as your urologist believes), then you may still be curable. In 2014, there were no mpMRIs or PET scans in widespread use that could detect local recurrence. Now there are. It's been found that up to half of all "high risk" prostate cancers treated with external beam radiation are still localized, and therefore, curable:
(I wrote those before PSMA PET scans became available)
So the critical thing to determine even before deciding which route (curative or maintenance therapy) you will pursue, is to determine whether the cancer is local (in the prostate, seminal vesicles, or surrounding tissues- stage T3/4), regional (in pelvic lymph nodes -stage N1), or distant (in distant lymph nodes, bone, or visceral organs -stage M1). This is called "re-staging."
You will need two scans, and possibly a biopsy, to re-stage your cancer. An mpMRI is still the best scan for finding prostate cancer inside the prostate. But it has to be read by a radiologist who knows how to read previously radiated prostate tissue. You will also need a PSMA PET/CT. PSMA PET scans alone can give false positives in the prostate because it is urinarily excreted.
So if you start with a radiation oncologist, he can order the two kinds of scans (and possibly a biopsy, if equivocal). If it's still local or regional, he can treat you and possibly cure you with salvage radiation. If it's stage M1 (distant), he can refer you to a medical oncologist.
My urologist had no plan when I wasn't a surgical candidate. Their RO had a plan, but as I found out on this board, it wasn't the most current or best for my diagnosis. The RO I saw at MD Anderson sent me to a MO and three days later chemo was done, then radiation. A much more coherent and after reading everything I can and also TA's exceptional posts and links I am most confident in the treatment that was done and what may be still possible when it returns. Currently I am NED. I am not so confident I would have had I stayed with my urologist. I did see another urologist, one recommended by my MO as I chose to forgo shots and completed an orchiectomy. Some discomfort POD #1, but so far very pleased.
Hi I am in Australia i agree with TA . I sacked my diagnosing Urologist before starting any treatment because i did not agree with him.GP gave me new referral to RO at Genesis Care on Firmagon since January
I was on Lupron for 2.5 yrs. w/little side effects and then off1.5. Pc came roaring back to 0.4, then 7.3, mets throughout skeleton. Started Lupron again with Apalutamide, about 3 wks. ago. Today the fatigue, I think, hit me and my legs felt like I had 100 lb. weights on them. Still took an hour, fast walk with my wife. Came home and sat down, ate lunch (rehydrated maybe?) and felt better. Then mowed the yard. Did not have this extreme fatigue w/ just Lupron. Anyone else have a similar experience. Lupron alone was pretty easy except my wife thought I got too grumpy!
How long did it take your Lupron SE's to take effect?
After your doc "hit the roof" you should have said Thank you for the demonstration. Then smile and find another doctor. MO or RO that has empathy, understanding of options and willingness to positively interact with you as a person with Cancer not a Cancer victim.
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