My dad was just diagnosed, initial PS... - Active Surveillan...

Active Surveillance - Prostate Cancer

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My dad was just diagnosed, initial PSA of 236 (tips?)

StayingSTRNG profile image
7 Replies

Honestly just looking to see what to expect! My dad got diagnosed with prostate cancer but initially they thought it may be lymphoma because his prostate looked fine and he had very enlarged lymph nodes but the biopsy confirmed prostate. His PSA was 236 and he has confirmed Mets on his pelvis, and on his spine, specifically on the T1 vertebrae where there is now a fracture. He also has 2 catheters direct to his kidneys (I forget the name, sorry) and is managing a blood clot in one of his lymph nodes. No treatment has been started yet, we are still waiting on more information and to speak in person with the oncologist.

We are stressing of course but just really want to know what to maybe expect and maybe some tips. Especially looking for diet tips. He has next to no fat on his body and they have struggled to even give him injections through his belly, I figured maybe it would be good to gain a bit of fat back before he starts treatment (if he can tolerate it). Thank you in advance!

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7 Replies
RMontana profile image
RMontana

I’m sorry to hear of your dad‘s condition. His PSA is very high and you did not mention if he has already received a PSMA PET Scan. I assume when you say his scan found MET That that is what you were talking about.

StayingSTRNG profile image
StayingSTRNG in reply toRMontana

I’m honestly not sure! I just know they said he has nine metastases in those areas

RMontana profile image
RMontana in reply toStayingSTRNG

...it may make a difference...make sure he got a PSMA PET scan. With this level of PSA the Sensitivity (finding a tumor) and Specificity (that the tumor is Prostate Cancer) is very high; over 90% for each function...make sure he got a PSMA PET. Otherwise if it were me I would ask for one...if he is relying on bone scans and normal PET scans then those have really been replaced (or are quickly going to be replaced) by PSMA PET...TNX

StayingSTRNG profile image
StayingSTRNG in reply toRMontana

Ohh ok I see! I can confirm that he had bone scans and normal PET scans. Do you mind explaining how the PSMA PET would make a difference, I’m definitely new to it

RMontana profile image
RMontana in reply toStayingSTRNG

In my humble opinion it makes a huge difference. I have posted my story on this site; see if you can find it. Basically, the Bone and PET scans are nearing or are obsolete; they should or will be replaced by PSMA PET...at the PSA you father has the accuracy of the PSMA PET in locating and classifying tumors as PCa (prostate cancer) are in the upper 90% range; above normal Bone and PET scan ranges. So with a PSMA PET your father can be more assured that if he has MET (metastatic disease) that he will find more of the sites where he has tumor growth and so better treat his disease...that is what I read. That was my experience...here are two sites you can look at to see the difference between the two...its night and day...TNX

youtu.be/xCLQZ480uuk

...or try this one...

youtu.be/4NrrBi4krXo

jackcop profile image
jackcop in reply toRMontana

Excellent views, RMontana!

jackcop profile image
jackcop

Hey StayingSTRNG!

Go to Advanced Prostate Cancer forum here on HealthUnlocked. You can also go to malecare (malecare.org) and/or email darryl@malecare.org who is the moderator for prostate issues here and Malecare.

I found this site HealthUnlocked, to be the best on the computer forums dealing with prostate cancer. There are different forums of prostate cancer: this Active Surveillance, is the one where a patient sees the urologist several times a year to note the cancer's progress or lack of progression.

I'm terribly sorry to hear of your dad's condition. But if he has metastases then the appropriate forum is Advanced Prostate Cancer here on HealthUnlocked.

jackcop

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