Newly diagnosed with prostate cancer: What might I be in for?

@jc76

I had my treatment done at the Orlando Cancer center. They have the Proton machine and the Mridian. The Mridian machine is in their Ocoee location and the Proton machine is in their downtown Orlando location. Dr. Kaitlin Christophersen did my treatment and she was trained at MD Andersen.

I have a friend that has recently been caught in no mans land who had a MRI and a biopsy that showed nothing with a PSA of 15+. Thats why this new PSE test, which I am going to try in a couple of weeks for potential biological re-occurrence (even though my PSA is where it should be...at its nadir), is so important, if it really works. 93-97% accuracy for detecting prostate cancer.

I also had a Gleason of 4+3. Somewhat aggressive and Dr. recommended surgery. That was in July. Had prostatectomy 10 days ago. Dr. did not recommend radiation as there is a lot of "off target" tissue and if I did have to remove prostate after radiation it is kind of messy. Had surgery done with 1 incision and one with a drain tube. Really did not experience much pain at all but gas was uncomfortable. Everything is uncomfortable in hospital. Hey, best of luck to you! My surgery went great and on my road to recovering, however long that may be.

I was Gleason 4+3=7 almost 7 years ago when I was 51. I chose to go to Northwestern for surgery, as proton therapy required 24 months of ADT, and both proton and radiation presented greater challenges if there was a reoccurrence. After 10 months of undetectable PSA tests, my PSA started to rise. It is noteworthy that I had a lot of stress in my life when my PSA began to rise, which I do not think is coincidence. I then did radiation to the prostate area and 24 months of ADT based upon the advice of my local urologist. This is where I wish I had gone to Mayo or another advanced leading treatment center. Mayo likely would have waited a bit longer to see where the PC showed up on a PET scan and perhaps provided more targeted and better treatment. My local urologist told me then that I probably had 5-10 years left, and although he may be right, the doctors at Mayo are much more optimistic and thought he was wrong to make this prediction.

After about a year off ADT, my PSA started to rise again. I stayed in Rochester, MN and had radiation for 3 weeks. I am now coming off 18 months of ADT and hoping for a cure or to at least kick the can down the road for awhile before considering other treatments. With Dr. Kwon's team, I have frequent PET scans at Mayo to aggressively see any problems and manage my treatment.

Since my initial diagnosis, I eat 10-12+ servings of fruits, veggies, nuts, whole grains, etc. a day, try to avoid sugar, meat and dairy (saturated fat is problematic in my opinion), keep my stress down, exercise daily, and I have a much greater appreciation for life with a better outlook and more gratitude.

I wish you the very best of luck!

I live in Nigeria, I was Gleason 4+3, i was counselled for radical prostatectomy. i did the surgery and Doctors say everything is fine. I did a PSA test seven weeks after surgery, my psa is reading 0.56. Doctors say that is fine, but i am confused and worried with sleepless nights.

@florida11
Do you live in Florida? I live in the Jacksonville area called Nocatee.

Jacksonville had two great prostrate cancer ceners. Mayo and UFHPTI. There area also some in Orlando and south Florida.

When you were first diagnosed did you get a PSMA? What about a bone scan? Those two should have been done to give your urologist and R/O a good prognosis of the treatment you needed and if the cancer had spread outside the prostrate.

Rochester Mayo is outstanding. You are going to one of the best. Good Luck!

I lived in Jacksonville for a year, and then outside Orlando for 7 years. I am now in Colorado, but I spend a fair amount of time on the gulf side.

I don't remember ever getting a bone scan. When initially diagnoses, I only remember CT scans and maybe an MRI. The first PET scan was done more recently (a couple years ago) when my PSA was rising and I went to Mayo. I think my local urologist was behind on technology and aggressive treatment.

Perhaps your PSA is residual from pre sugery and still going down?
My first postop PSA test was taken at 90 days/13 weeks and reported .19
Repeated test 30 days later at .18
My understanding is PSA greater than .1 postop is called "persistent" and I was then treated with Salvage Radiation and ADT.
Prostate Cancer Foundation pcf.org has downloadable free Patient Guides.
Good wishes

Thanks i will try again after 90 days

After surgery, you should have a less than .1 PSA. Something is wrong with your doctor saying that .56 is OK. Normally if you hit .2 after surgery, they want to do salvage radiation. Mine stayed less than .1 for 3 1/2 years after surgery. If you’ve had radiation then .56 would’ve been OK., not true with surgery. Something in your body is putting out PSA and it’s not your prostate anymore.

I think it’s time to get a second opinion, are you seeing an oncologist or just a urologist? Get help from an oncologist.

@florida11
Not being a medical professional can only pass on what my R/Os as both Mayo and UFHPTI wanted for testing.

After rising PSA numbers even though still normal I was referred to urologist. Urologist did MRI with contrast. MRI revealed suspicious areas and then had a MRI/Fusion biopsy. They found several areas of prostrate cancer. Some were 3+3 and one 3+4 which placed me in intermediate risk. R/O at Mayo first recommended radiation with hormone treatment but wanted to do more test to help determine the diagnosis.

R/O at Mayo ordered bone scan and Decipher. Bone scan came back negative. Decipher came back low risk not intermediate risk. Changed treatment from radiation with hormone to radiation only.

Went to UFHPTI for second opinion ( I am one among many that recommend second opinions). R/O there agreed with dignosis but wanted another test done PSMA. That came back negative also. Thus has 30 rounds of proton radiation at UFHPTI.

From what my R/O said and my urologist doing those tests (PSMA, Decipher, bone scan) all help determine whether cancer is inside prostate only or spread and the Decipher will confirm the aggressiveness of your cancer.

I am not sure why your R/O and/or your urologist did not recommend them PRIOR to ever recommending treatments. But you will see on MCC these tests are very valuable and manny like me on MCC will recommend having them.

A CT scan cannot provide the detail of tissues like an MRI. This comes from every medical provider that I see. It is not my opinion but what is passed on to me. I hope you had an MRI not just a CT.
Good luck!!!