Hidden3 years ago

You need an oncologist if you don't have one.

Tnjw in reply to Hidden3 years ago

I was referred to urologist by medical oncologist. Urologist is part of prostate cancer team, including oncologist at university medical center. Thanks for your reply

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Tall_Allen3 years ago

Your April 2020 was not a rise - .02 is undetectable (you were taking the wrong PSA test for your situation).

Data so far suggests that more aggressive treatment may be beneficial:

meetinglibrary.asco.org/rec...

meetinglibrary.asco.org/rec...

You may wish to join this clinical trial:

clinicaltrials.gov/ct2/show...

It is too early for docetaxel, however:

jamanetwork.com/journals/ja...

Tnjw in reply to Tall_Allen3 years ago

Thanks for your reply. Will share with doctor.

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Hidden3 years ago

The info you provided is very limited in the following respects:

1) "no metastatic involvement", ok, but what about the prostate itself that you still have. Was that clear as well?

2) "including pet/ct", Which type PSMA, Axumin, other? Whatever it was, at PSA 0.02, it provides low (PSMA) or nil (Axumin) detection rate.

Coming today, your current PSA of 7.4 leads to a very high detection rate by either pet/ct.

By taking the test again I can speculate 3 different outcomes:

a) Local detection in or around the prostate. Possibility of prostate masking up extensions to neigbouring soft tissue. You stated T3b, meaning seminal vesicle or vesicles involvement. Local extension from there is something to consider.

b) As in a) but distant metastases detected as well. Good to know for managing your treatment.

c) Nothing shows up. Well, you have an one in a million chance that you are "cancer free" and a very high residual probability that you have a rare kind of this disease that you would like to find out sooner than later.

Summing up, IMO you will get some further info by repeating the test. Why your dr advises to the opposite, is totally incomprehensible to me.

Tnjw in reply to Hidden3 years ago

Thanks for your reply. Axumin Pet scan was preformed in May 2020 not April , my apologies for mistake . Psa at time of scan was 2.0.

Findings : primary tumor : fiducial markers are present in prostate. The prostate demonstrates activity with maximum SUV of 3.9. No evidence of extraprostatic soft tissue or abnormal radiotracer activity to suggest local regional spread. Nodal metastases : no enlarged or radiotracer avid lymph node identified. Distant metestates: none identified.

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Hidden in reply to Tnjw3 years ago

If you have access to PSMA PET/CT you may consider a double check. Your PSADT doesn't leave room for postponement, IMO.

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CalBear743 years ago

T,

The continued use of intermittent therapy does not seem justified, according to my urologist, and therefore I would suggest finding a new urologist who is up on contemporary research as my urologist is. In my 30 years in healthcare I came to find the buddy to buddy referral patterns often dysfunctional. You may not have to dump your oncologist at first, but he won’t be happy with your getting a new urologist.

rogerwegner3 years ago

It sounds like you you might be ready for apalutamide or something similar

tango653 years ago

Perhaps you should consult with an urologist and a RO about the activity in the prostate to find out if localized salvage therapy is necessary or indicated. There are several possible treatments.

ncbi.nlm.nih.gov/pmc/articl...

You could consult about repeating the PET/CT sooner rather than later to determine if there are distant or local metastases. With a PSA of 7 the Axumin scan has a better detection rate.

j-o-h-n3 years ago

Greetings Tnjw, Please give us more info regarding yourself. Age? Location? Treatment center(s), Doctor's name(s)? Thank you!!!

All info is voluntary but it helps us help you and helps us too.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/11/2020 4:44 PM DST

Tnjw in reply to j-o-h-n3 years ago

Thanks for your reply. I am a very active 74yr old (time flies) live in East Tennessee, being treated at Univ Tenn medical center in Knoxville. Have been on plant based diet for almost 7yrs. Faith is guiding me on this journey

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j-o-h-n in reply to Tnjw3 years ago

Thank you for your quick and detailed reply. You may want to copy and paste your response to your Home Page for yourfuture use and for use by other members.... Take care and keep fighting....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/12/2020 11:50 AM DST

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immunity13 years ago

Suggst more aggressive treatmenet. My staging and Gl score identical to yours in 2010. Check my profile for multitude of treatments. I strongly suggest Lu177 treatment at this 'early' stage if you can access and afford it, based on PSMA avidity.

CancersDaughter3 years ago

I have read and reread your August 10 post to decipher your timeline.. Have I got this right?Feb 2014 PSA 10. Mar 2014, first Lupron chemo dropped PSA from 10 down to 3. Then Jun 2014 Proton radiation dropped PSA down to .01. Then no treatment until 6 months later (Nov 2014?) for the second Lupron chemo, which apparently lacked the PSA result of the first one because 3 months later PSA rose to 6. How did PSA jump from 6 to 20 in 2 years? What was your treatment during that time? More Lupron? Or? You said your first holiday was not until May 2019. So Dec 2016 you switched to Firmagon with good effect, in 9 mos 20 to undetectable. And it seems you have enjoyed 15 months of no treatment, but have concern now about PSA 7.4. I don't have the answers. But I have the questions. I know the cost of Proton is very high .What did you feel was its value dropping PSA from 3 to .01 then 9 mos later up to 6? Did you expect more? Side effects? I have been resisting radiation for reasons I can present in another time. Thank you. Coop

Tnjw in reply to CancersDaughter3 years ago

Whitout to much detail, psa was 10 at start of proton therapy. Dropped to 0.1 3mos after therapy then rose to 6.0 9mos after therapy. Mo and Ro agreed adt best option. After much consultation, research etc. began firmagon with high psa which went to undetectable. Coming off of adt holiday as psa is rising again. Dr says micrometastatic pc as axium pet scan in May was negative...no mets or involvement.

Proton therapy was a blessing with minimal if any side effects. Mine was covered by Medicare and Humana supplement. I feel the proton therapy was successful as micrometastatic involvement had begun most likely prior to treatment. Have a lot of negative reports from conventional radiation, but know each case and individuals are different

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Exrunner3 years ago

You might like to read the latest from the AUA

auanet.org/guidelines/advan...

Tnjw in reply to Exrunner3 years ago

Thanks, great info

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Hidden3 years ago

Welcome Tnjw to our special club that no one really wanted to join. You’ve come to the right place for answers . I’m not the expert. Just another guy with APC . I like the plant based diet . I do the same . Firmagon is great stuff. I had only one just shot and my PSA came down quickly . I don’t think intermittent is good until you’ve put your pc to sleep for awhile?? Men dread adt but I’m only here now due to adt . I did 8 weeks imrt and that’s it so far . I’m was fortunate to be given a prostate cancer specialist that choose imrt and double adt instead of the six months of chemo and the 36 month expiration date that my uro gave us . Faith and prayer are my constant companions .. Keep the faith . Gods speed to healing . 🙏

Tnjw in reply to Hidden3 years ago

Thanks for your reply. Yes with Faith and prayer there is always a path. I was on firmagon for 26mos continuously just coming off 1st holiday of 15months. Dr is suggesting intermittent going forward

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Hidden in reply to Tnjw3 years ago

Follow professional advice . 🙏God be with you .

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