How many cores? And follow-up with results received

@justme129
Moffitt is considered from what I read as an outstanding cancer center. You mentioned Mayo Jacksonville for second opinion. I have been a patient at Mayo Jacksonville since 2006. It is where I had my DRE, MRI/Contrast, and my biopsies done. But I chose UFHPTI for my radiation treatment because Mayo Jacksonville could only offer photon radiation and I preferred proton.

I think but not sure if you contact Mayo Jacksonville and asked for second opinion you might be able to send them your medical records and get a second opinion. In my case Mayo Jacksonville did additional tests that you have had. They added Decipher and bone scan. When I got second opinion at UFHPTI they ordered, and I got PSMA.

I noticed your Gleason score of 3+3=6. Let me suggest you look up Gleason Scores and their meanings. A 3+3=7 is consider low score and you have lots of options. I am not a medical expert but having gone through this with a Gleason score of 3+4=7 I wish I had your score of 3+3=6 if that tells you anything.

@justme129
I see I put a wrong number in the last paragraph. 3+3=6 not 7. Sorry about that. Getting old these days and the old eyes don't pick up things like they used to.

@jc76 thanks . I have 2 areas that show perineural invasion, and that’s concerning. How did you do with your radiation?

@jc76 It's ok. I knew what you meant.

@justme129
UFHPTI is an outstanding facility. If I remember right they have individuals from all 50 states coming there along with I think about 60 different countries. When I was in the lobby waiting for my radiation treatments I would hear the foreign languages and would try to figure out the country.

I did have some minor issues with the radiation treatments. The actual radiation treatments do have any pain or discomfort associated with them. You don't have any idea you are being radiated other than the huge machines around you. After getting on the table for treatment probably took 10 minutes for treatment and gone.

I had 30 rounds (forgive me if redundant information) of low dose proton radiation. Every single side affect I mentioned next I expected as the R/O went over all to expect and what to do about it if they occurred.

About 15 rounds in I developed what looked like a sun burn on both sides of the hip. This is where the proton radiation enters body and can cause what looks like sunburn. They told me to use a cream on it if it bothered me, It did not. I was told would eventualy turn to tan and then slowly go away after treatments. It did.

About half way through again I started to have some light fatique. It did not stop me from doing anything but when I walked for exercise I could tell was a little tired. After radiation traeatments ended this too slowly went away and I got back to doing Spring Triathlons.

I had the Space/Oar to help move my colon away away from prostate and drank about 16 oz. of water to help move bladder away from prosate prior to treatments. After about 15 treatmentn I started having issues with incontinence not being able to hold my urination when it got to the full and urgent need to urinate. My R/Os instructed me to go to the bathroom when I could not when I had too. This fixed the incontinence.

I had some dribbling after urinating but I think this was just getting old. But learned about Kegel exercises and did those and still do them 2.5 years later. It really helped also with the dribbling. I also had the increased need to urinate and was getting up several times a night. I dealt with this but it continued after my treatments ended. So again I talked to my UFHPTI R/O and he prescribed Cialis. I thought that was for ED not frequest urination.

But when talk to my Mayo PCP and he said very common to prescribed this as I do all the time. He said common prescribed drug to help relax prostate, and bladder, as are suffering from inflamation caused by radiation.

It worked. My need to go at night cut in half, urgency and not being able to hold stopped. It is why some on MCC post their concern with radiation I say there are many medications to help if needed along with lifestyle changes like Kegel exercises (which I learn to do also).

Please forgive me for long posts. It probably is one of my worst traits.

@justme129 The PNI sounds frightening but as has already been explained by @topf, it is not an indication of more serious disease.
It is, however, indicative of the lateral spread of the abnormal tissue - outward toward the periphery. So if this turns into 3+4 or 4+3 (like mine) over time, it will have a greater chance of escaping the gland.
You’re good right now, but that second opinion and further testing is all important.
Phil

@heavyphil Thanks, I did already submit a request for recut slides to be sent to Johns Hopkins. I am going to make a strong case for a PSMA Pet Scan as well. I know that's not typical with Gleason 6, but given the PNI and my family history of cancer, I think I should have that done sooner rather than later!