Need Help

[Jimbo47]

I posted about a month ago and didn't get any responses. I think it might be because I didn't have much information in the Profile section. I've updated my profile and did the best I can to describe my story. I had HDR Brachytherapy in 2018 to treat prostate cancer. The specifics are now in my Profile. For the past 6 years my PSA has bounced around but mostly under 1.0. In June 2023, PSA was .86 but my Primary Physician noticed that it had elevated 3 times .29 to .35 to .86 in 3 years. She said we need to do the next PSA at 6 months rather than 1 year. It elevated again from .86 to 1.49 during the 6 month period. My Primary Physician recommended that I see a urologist. I saw the urologist in January of this year. We did another PSA mid January and it was 1.12. He recommended either doing another PSA in 3 months or an mpMRI now. I chose MRI and got the results today. I have a telemedicine appointment with the urologist at noon tomorrow. I want to be prepared. Here are the MRI findings:

Prostate: Calculated Volume 14.5 cc PSA density : 0.08, normal.

Gland description:

There is generalized hypointensity throughout the transition zone and peripheral zone, consistent with history of radiation therapy. Ferromagnetic artifact from radiation fiducial markers is noted. No significant restricted diffusion.

Seminal Vesicles: There is asymmetric restricted diffusion with contrast enhancement seen medially in the right seminal vesicle corresponding to axial T2-weighted image 19. The left seminal vesicle demonstrates T1-weighted precontrast hyperintensity consistent with proteinaceous fluid without restricted diffusion.

Bones: No suspicious lesions.

Unless otherwise recommended, the incidental findings identified above require no follow up imaging based on consensus recommendations.

IMPRESSION

Radiation changes are noted diffusely within the prostate gland as described above.

Asymmetric contrast enhancement with restricted diffusion seen medially in the right seminal vesicle is consistent with recurrent prostate carcinoma. PSMA PET/CT verses biopsy should be considered.

No lymphadenopathy or suspicious osseous lesions

PIRADS X: Post treatment

I don't understand the medical jargon in this report. I'm trying to figure out what to say to the urologist tomorrow. If it's true to form he will rush through the meeting. I would appreciate any comments or advise that anybody on this forum has to offer.

[Tall_Allen]

It sounds like there is some regrowth in your right seminal vesicle. Was it treated originally with HDR brachy? You should be talking to Amar Kishan about salvage radiation with some hormone therapy. It's a good idea to have a PSMA PET/CT as well to check for distant metastases.

[Jimbo47 in reply to Tall_Allen]

Tall Alan. Thank you for your reply and advice. The Brachytherapy only treated the prostate gland. How do I contact Dr. Kishan?

[Tall_Allen in reply to Jimbo47]

Call him at UCLA.

[Jimbo47 in reply to Tall_Allen]

Thanks. Going to meet with my urologist tomorrow. I'll definitely have the PSMA PET/CT then come up with a treatment plan. Is there anything I'm missing?

[cfhny]

Interesting that your PCP would advise going to a urologist, since you are already diagnosed with PCa. The predominate feeling on this forum is once confirmed it is cancer we are far better off leaving the urologist behind and seeking an oncologist's help only. I am coming up on my third year anniversary of ADT (Eligard) and am strongly thinking of disconnecting with my urologist. He brings little to the table - only asks how I am doing with very little discussion and then orders the Eligard shot by the nurse.

[dhccpa in reply to cfhny]

I agree.

[Jimbo47 in reply to cfhny]

Thanks for your response. I met with my urologist yesterday. He's a good guy, doesn't have a massive ego. He suggested that we do the the PSMA/Pet scan then hand this off to an oncologist. I told him I want to go to one of the major cancer centers in the LA area. He suggested that I see Clayton Lau at City of Hope. Does it matter where I have the scan? He wrote the order for RadNet. That's where I had the mpMRI.

[cfhny in reply to Jimbo47]

Jimbo - because I am not a doctor, I will not give any treatment advice. But,personally I would get hooked up with my chosen Oncologist and do everything through him and in the order that the two of you agree on. He/She should become your new best buddy, and in my opinion you need to start building that relationship and trust asap. Sidebar note: I became so disenchanted with an Oncologist I was seeing for a while that I actually stopped going to my Cancer Center. I now see someone else there with much more of a support, thankfully. I wish you well on your future travels.

Charlie

[janebob99]

Agree with everything that's been said. Spot radiation to the seminal vesicles should take care of the rising PSA.

Where do you live?

[Jimbo47 in reply to janebob99]

I live in Ventura Ca.

[janebob99]

I see where you went to UCLA for HDR BT. You should call Dr. Kishan. He's done a lot of very good YouTube videos. He will want to send you the PROSTOX test. It's a free cheek swab DNA test that checks for genetic sensitivity to radiation damage (toxicity). 90% of men are fine, but 10% do badly with radiation. If you only irradiate the seminal vesicle, perhaps the side effects won't be as large as what you previously suffered through.

A PSMA-PET scan will definitely tell the RO where to irradiate the hot spots.

Dr. Kishan told me that the MRIdian X-ray machine will be back on-line in a week or two. That is his preferred machine to use for RT (It's a combined MRI plus X-ray machine that more accurately tracks the location of the cancer than older non-MRI machines).

Bob

[Jimbo47 in reply to janebob99]

I appreciate your response. I'll contact Dr. Kishan.

[cscmetsfacil]

Jimbo, you are getting good advice here. Especially that you need to assemble a better medical team. The Cancer Support Community where I facilitate both Localized and Metastatic Prostate Cancer Support/Networking Groups, we encourage being very proactive - which you are doing by reaching out here. You should find the best urologic radiation oncologist you can. I have several on my team depending on the kind of RT they use to match the different types of RT that I have needed. You should have a Medical Oncologist to give advice on your Testosterone and PSA level and to prescribe systemic treatments if they become necessary. I had HDRT and 5 weeks of IMRT, 6 years ago and the areas that were treated were cancer free. I was GL 8 and sadly I already had undetectable circulating PCa cells. The PSMA Pet/CT will ID if there is any detectable metastasis outside the seminal vesicles. You need to know that and any good RadOnc or MedOnc will support this. Keep us informed. Finally, if you are not in a prostate cancer support group, join one! If you are in SoCal, you might want to also consult with Dr. Mark Scholes in Marina Del Rey, with the Prostate Cancer Research Institute (PCRI), which is a terrific resource for all of us.

[Jimbo47 in reply to cscmetsfacil]

I appreciate the help that I'm getting here. PSMA Pet is next. As I said earlier my urologist suggested I see Clayton Lau at City of Hope. I think they both went to Tuffs. If any of you guys have another oncologist that you would recommend please let me know. I think a support group would be good for me. I'll contact Dr. Scholes.

[Xcrunner1988]

Hey Jimbo,

Sorry to hear you’re dealing with this. Are you being treated by Dr. Chang at UCLA? He did both my original one dose at UCLA in 2015 and my two dose salvage in 2023.

I’m not a doctor but my read seems to indicate some level of concern with seminal vessel.

I would think a PSMA scan could confirm and probably something to insist on. Based on that info some treatment options become available

[janebob99 in reply to Xcrunner1988]

Good plan. I think cscmetsfacil is perhaps referring to Dr. Scholz (unless there is also a Dr. Scholes?).

Dr. Scholz has done a lot of YouTube videos that are relatively short and informativ e.

[Jimbo47 in reply to Xcrunner1988]

Thanks for your concern. I was treated by Dr. Chang in 2018. Two treatments of HDR Brachytherapy. I've had some serious side effects from the Brachytherapy (see my profile). Now the cancer is back. I'll be scheduling a PSMA Pet scan next week. I'm hoping there is no metastasis outside the seminal vesicles. I really appreciate the support I've gotten on this site.