1st meeting with MO

I had my first visit with my new MO yesterday. He asked why I had made an appointment to see a medical oncologist. I explained that I made the appointment because I have radiorecurrent PCa confirmed on PSMA. He asked if wanted hormone therapy. I said no, God no. He said in my opinion you don’t need hormone therapy now because you have low grade cancer, slow PSADT, advanced age, and are asymptotic. It felt good hearing that (not the advanced age part). He showed me the PSMA scan looking at the liver with no PSMA update and compared it to the prostate with a small lighted place which he seemed to think was low grade. I had assumed the cancer would be brighter on the scan. I asked him how he could tell it's low grade since the PSMA report did not indicate SUV or PI-RADS. He did not answer directly but said I’ve had this cancer for 10 years and it hasn’t spread yet so that suggests it low grade, probably 6 or maybe 7. I assume he meant Gleason 6 or 7. When I asked how he calculated the PSADT, he said are you telling me how to do my job. No sir I replied. It’s just that my RO and I both use MSK and got 15.9 months and you got 24 months. I like your number better but I’m just curious. When I got home, I put in PSA numbers from 2020 and 2021 which does increase the PSADT to 24 months so I assume he uses MSK too. MY RO left out those earlier years because he felt the PSA had accelerated from 2022 so we started with that year. I believe the PSADT is lower than 24 months, maybe even lower than 16. But what do I know. His conclusion that my cancer is low grade seems a stretch too. Without a SUV max on the PSMA it's just conjecture.

We discussed salvage therapy but I got the impression that he was not in favor of it. He believes the side effects are significant and cure rates are not good. The only salvage Duke does is Cryotherapy and maybe HIFU, neither of which interests me. He wants me to have PSA test every 6 months and when it doubles have another PSMA. It seems to me he thinks I should do nothing until I’m metastatic and then have hormone therapy. I don’t feel good about that. I told him my local urologist had ordered a mpMRI and he said that would be fine if I wanted it and a fusion biopsy with systematic samples as well.

He seemed surprised I came to see him. I know he primarily treats cancer with medications and he believes I have low grade local disease and don’t want or need hormone therapy. I said I assumed he would be my lead doctor at Duke for PCa and since they use a multi-disciplinary team approach, he would submit my case to the team and they would review and make recommendations for treatment. I think he felt that I didn't need that at this point but he would be glad to refer me to a urologist, RO, or surgeon if I wanted to talk with them.

Not sure how to proceed.

Post Edited (hrpufnstuf) : 3/8/2024 2:46:15 AM (GMT-8)

A medical oncologist treats cancer with medications. I guess you got what might be expected from a standard MO who has no special affinity for prostate cancer. The discussion you describe sounds logical and probably a reasonable conclusion based on the situation. However, he did not seem to take your feelings into account very well.

You probably have to seek out someone that may be more knowledgeable and sympathetic to prostate cancer and can address your concerns better. Hey, he did not say to get your affairs in order like he has to do with many cancer patients so it is a win in its own way.

JNF, this is part of the MO's bio:
My goals are to develop and provide treatments that prolong and improve quality of the lives of patients with aggressive prostate, kidney, bladder, and testicular cancer. This work involves the direct care of patients in the clinic and clinical research involving the development of new therapies in clinical trials. I devote over half of my time to understanding how prostate cancer spreads and resists therapies, as well as methods of measuring this biology in patients, which may lead to improved therapies designed to block this process.

Mattam, he is at Duke and very well educated and published. I've read several of his papers. He attended Duke, UVA, Johns Hopkins and Univ of Penn.

JNF, I did bring up SBRT and he said I couldn't have salvage radiation since I had primary radiation. I answered that by saying that I've read several studies of SBRT for radiorecurrent patients, albeit with short follow up. He said there you go, short follow up. He said Duke doesn't do SBRT for salvage treatment. Then he said, I see that you're a retired CIO. That explains why you're so detail.
As to PSADT, I look at the 1/24 of 3.28, then the 2/24 of 3.66 and do simple math of 3.28 divided by .38 resulting in ~ 9 months. Is that valid? Probably not since the time periods are just 1 month apart and it's an overly simplistic approach. PSADT calculators are extremely complicated algorithms for good reason I suppose and require several historical readings separated by 3-4 months at minimum.. Still, I cant shake the feeling that's the doubling time is far less than 24 months.

Post Edited (hrpufnstuf) : 3/8/2024 10:41:59 AM (GMT-8)

HR, I wouldn’t ask a MO about radiation therapy any more than I would ask a RO about chemotherapy. Keep your questions specific to the board certified specialist. There isn’t a hierarchy that says the MO is at the top. The MO is a professional peer to other board certified specialists. Nor would I expect the MO to be the tie breaker between differing assessments of other specialists like the urologist or RO. Your MO does appear to have significant bona fides in PCa treatment, but he is but a MO. And just because Duke doesn’t use SBRT in a salvage situation doesn’t mean it shouldn’t be or can’t be or that no one else does. Don’t be limited by the practice of any one institution.

As to doubling time, I don’t think the analyses uses interpolation or mere averaging. Plus, short term measurements should not be used to project long term trends. Without knowing better, I assume you should put in all the data points you have going back to the point you were clear from ADT effect. Then, trust in the generally accepted application (MSKCC) to find the results.

Going back to your earlier accounting where the MO said not to treat until you are metastatic, the conflict I see is that you probably want to treat so you don’t become metastatic. With one identified met, you aappear to be in a situation similar to being oligometastatic. That is where you have 5 or fewer known Mets (usually distant) and the you treat them focally. This can be very effective. For example, my wife has found herself in such a situation recently with two spinal Mets from BCa dx more than a decade ago. She had radiation to them and is on a couple of drugs for MBCa and is doing great. Next PET scan is next week so we will see some initial results. Your difference appears that the only known met is local and an area already radiated. So additional focal treatment could include cryo, HIFU, NanoKnife and perhaps SBRT and High Dose Rate Brachytherapy. There is not a law that says you can only radiate an area once. Many people have repeated radiation and it is all dependent on the original treatment, the proposed treatment and the passage of time between to determine eligibility.

Since you don’t want either cryo or HIFU, then search for the proper radiation oncologist that can guide you with SBRT or HDR-BT. If it were me, I would consult with Dr. Alvaro Martinez in Detroit. He is the leading RO for PCa and has rewritten the book on HDR-BT. His protocols are the standard now for dose and fractions and used nearly universally. He does tele-visits and can provide an assessment for both SBRT and HDR-BT for your situation. I have helped several friends use him for HDR-BT when they didn’t have proper local specialists and all are doing great.

Casey59, You're right about overthinking it. I know that about myself but it's hard not to when you've been doing it your whole life. Honestly I don't know what to enter in the MSK calculator. My RO uses dates starting in 2022; the MO starts at 2020.

hr - As an old school retired engineer, you throw the stat-math out and plot the points on a graph and stare at it for a while. Enter dates and values in Excel and plot a line graph is easy. It will be clear where the line is heading without linear, exponential, or log spiral extrapolations. The quality of the limited data does not deserve anything more.