Newly Diagnosed

@tbyota
Did you mean you are scheduled to take PET scan next week versus not?

If not would suggest you asked for a PSMA test. Also the Decipher test. Both will help more define you husband's diagnosis and risk level of his cancer.

I had MRI/contrast, MRI/Fusion biopsies, PSMA, bone scan, and Decipher. I also did 3 different opinions on diagnosis and treatment options so passing you to you my experience with those.

My test did not show cancer was outside of prostate. So I don't have any direct experience with the options and treatments when and if goes outside of prostate. I think important to just share you personal experience with your journey of diagnosis, treatments, and outcomes and on going life.

Many on MCC did have their cancer outside thier prostate at time of diagnosis and many found out later that it had spread outside prostate years later and what treatments and options they had. I think that personal experience is far more relevant to you than citing studies.
Good luck and hope it is diagnosed only inside prostate. Know though in today's world urologist and R/Os and surgeons have great treatment options.

My cancer was outside the prostate, the tumor had protruded into the seminal vessels and further spread to pelvis and one lymph node, Gleason 4+5
I did have a PSMA PET scan that showed the cancer in these areas. My PSA was 62.
Surgery was not an option given the spread of the cancer. I was put on a testosterone blocker and a second generation androgen blocker in drug,Nubeqa. Within 5 months my PSA had dropped to less than 0.10. I next had a pelvic MRI which revealed my tumor as shrunk back into the prostate, lymph node lesions had greatly decreased and the cancer in the bones was gone. I am now having radiation to destroy the remaining cancer, but still have to take the drugs I mentioned.
These treatments work, but the side effects are tough and you have to stay active and exercise to reduce the side effects.
This is my experience, hope this helps to answer your question and I wish your husband the best!

Thank you. Yes he is scheduled to take the PET Scan next week.

Yes it did thank you

Please tell hubby that I'm so sorry he had to join our little (not so little) club. The treatment options you ask about will depend on the result of the PSMA PET scan. As you said, if contained, 2 options. In my case (Gleason 9- 5+4, with 10 of 12 cores 100%), PET scan lit up like the proverbial Christmas tree. Lymph involvement from chest to pelvis and bone (vertebrae). Because it was so widespread, surgery wasn't even considered. Immediate ADT (androgen deprivation therapy) and ARSI (Androgen Receptor Signaling Inhibitor) followed by radiation to the prostate. @jc76 outlined other tests that you will come across but the PET is the biggie at this point in your journey. Best wishes and please keep us informed of progress.

You might post the biopsy information on this forum so people can review what really is going on. There might be issues in the biopsy that you are not aware of that could cause his cancer case to be much more aggressive.

The doctors did provide you with a full biopsy printout. You should be able to see it online in the medical record information.

This is what was on my husbands biopsy: prostate, left apex, core needle biopsy adenocarcinoma of prostate, gleason score 8 grade group 4 tumor involves 2 of 2 cores and approximately 15% of sampled tissue. gleasons pattern 4 comprises 100% of the tumor volume. Focal perineural invasion is present

@tbyota
A Gleason eight cancer can be treated by surgery or radiation normally. There is one somewhat significant issue.. Focal perineural invasion (PNI) is a significant finding in prostate cancer pathology reports because it indicates an increased risk of cancer spread, progression, and poorer outcomes, including higher rates of biochemical recurrence and potential metastasis.

The thing is, it is not widespread PNI Which is a much worse condition it is just in a spot.

I had PNI in my biopsy and I’m still alive 15 years later, even though I have a serious genetic problem. I know a lot of other people that had PNI but it was not a significant factor in their overall survival either.

I would think your husband could be treated and would have a long term Progression free survival.

It sure would make sense to get a decipher test to see if there is A high chance of recurrence.

Is it possible that with the PNI it has not spread outside the prostate? Hoping that even with the PNI he can be treated whether localized or spread

@tbyota
Ask for the biopsy material to be used for a Decipher test which doctors do use to evaluate and change initial treatment choices and gives you a feel for aggressiveness.

If radiation, ask about the Mridian or Elekta Unity radiation machines that are the only two that have built in MRI versus fused images. The less healthy tissue exposed, the fewer the side effects and quality of life. These machines hit less healthy tissue.

Come back to this site so we can all continue to share our experiences in a way that may help your husban as you guys work through some complex issues.