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RO follow-up visits: how many years?

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Posted 7/9/2023 11:18 AM (GMT 0)
I had RALP and then SRT about 4 1/2 years ago. I have my PSA test every 6 months with my Uro plus a follow up visit with him, which I understand makes sense. But my RO who performed my SRT still likes to see me annually and I’ll see her this week. I’ve had no SE / issues related to the SRT. I plan to ask her if she needs to see me moving forward but thought I’d also ask the group here for thoughts….
Posted 7/9/2023 11:30 AM (GMT 0)
My first RO moved on to St. Joe's (downtown) right after my treatments at Crittenton - never saw her again. My second RO turned me over to his nurse practitioner about 6 months after that treatment series concluded. I now (3 years after those treatments ended) see the nurse every 6 months to go over side effects and my 3 - monthly blood tests (all < 0.1 for 2 years). This as the radiation side effect nadir (maximum) is still a few months out. Now on 6 month appointments, if PSA goes back up, I will lather, rinse repeat with the RO.
Posted 7/9/2023 12:26 PM (GMT 0)
Radiation as primary treatment would create a different RO relationship than ART/SRT after surgery from my experience.

I had a scheduled follow up visit with my RO a couple of months after ART treatment ended. We quickly established that I would follow up with urologist for PSA monitoring with copies to him and there was no need to follow up further with him unless I wanted to or had any RT related issues. He did not expect me to have any problems and said that the schedulers may call for for future appointments and they were not necessary.

I am at that point with my URO also, we have great discussions but he said future meetings are not really necessary unless something changes with PSA or urinary system. On the one hand, I like meeting with both doctors and regular meetings seem to be informative and reassuring but on the other hand, they are extremely busy and we don’t have much to talk about specific to my situation. Like most specialists, they treat specific problems and when the problem is over with, they go back in the drawer with the other tools. I guess if I never need a URO or RO in my life, that will be a good thing.
Posted 7/9/2023 3:45 PM (GMT 0)
I had SBRT as a low risk Gleason 6 with a rising PSA 6 years ago. I met with my RO or team member on a regular basis by virtual visit for five years. At the post 5 year point my RO felt no additional followup was necessary except continued annual PSA monitoring which our PCP schedules with my yearly blood draw. At my last check (70 months post) my PSA continues to drop. BTW at age 76 my urinary and sexual function are excellent and I don’t believe I’ve experienced any significant side effects from my treatment choice. Terry
Posted 7/9/2023 6:24 PM (GMT 0)
Hi Paul,

Great to hear that you're doing fine! Looking at your posted history, I believe you had adjuvant RT for persistent PSA after RP (0.1 and higher) rather than salvage RT for BCR (a PSA of 0.2 and rising following an "undetectable" PSA after surgery). I don't know if the total radiation doses are the same. You may want to discuss with your RO the likelihood of any longer-term adverse radiation effects; this could be one of the reasons she has wanted the follow-ups. You can also ask about her typical follow-up schedule for patients with similar histories.

Djin
Posted 7/9/2023 6:58 PM (GMT 0)
I did not use surgery, but had BT and IMRT. Due to my risk factors, I saw my radiology oncologist for five years. At that point he was positive I had no radiation induced damage and that the radiotherapy was effective. Also, they directly tracked patients for their treatment/results statistics. I still see my urologist and have semiannual PSA tests. Just gave blood last Thursday and should get results soon.
Posted 7/9/2023 8:14 PM (GMT 0)
I had chemotherapy and later 45 sessions of radiation.

My radiation plan was "mapped out" by the radiation department at Mayo Clinic, but my treatments were done locally by a radiologist.

Nine weeks ~ 45 treatments.

Following that, I have continued to be under the care of my oncologist, with no additional follow-up or consultation with the radiologist.

Just another first-hand experience to toss into the ring ~
CYCLONE ~ # Iowa State University
Posted 7/10/2023 12:20 AM (GMT 0)
Paul, thanks for posting this question, it's something that's been on my mind. Like you, I had surgery, (January 2015) then SRT+ 6 months ADT (Last shot and last treatment, November 2018, ) I did not have persistent PSA after surgery I started showing detectable PSA 2 years post surgery.

My RO turned me over to the NP shortly after my treatment (around when the pandemic started) unofficially, it just happened we never discussed it. I have been testing every 6 months and each test followed up with a tele video visit with the Nurse Practitioner. In our last visit, she indicated I could go to 1 year testing because it would be unusual for a recurrence to happen now that 3 years have passed. Not sure I believe that from what I have seen here. So I declined. But later decided to stretch it out to every 9 months,

My next PSA and NP video meeting is next month. I have been thinking of asking her if it's necessary to continue these meetings. Only thing stopping me is that I would like to stay in the MSKCC system, in case anything pops up.

Anyway, that one issue aside, IMO, if Radiation was not the primary treatment, I would think after a couple of years, it would be ok to do PSA testing with your primary care physician. (not sure I will only because I don't want to jinx myself I know that's dumb, but I am a little superstitious LOL)
I think this particularly holds true for guys like us, who are here, or have been here, and are pretty well educated on the what ifs

Please let us know what you decide, I'm interested in hearing back
Posted 7/10/2023 12:44 AM (GMT 0)
Interesting question. I only had primary radiation treatment. I met with the RO for one year then he kicked me to the curb, telling me to contact him any time if I ever had an issue but telling me that his work was done unless I had any problems. I continued to follow up with my urologist for two years from the initial treatment when he told me the same thing except to get annual PSA tests from my PCP and to contact the urologist if I ran into any urinary or sexual health issues or if my PSA shot up.

So for the last 13 years I have been without problems and have had no contact with either of them. Good thing I didn’t need them; they both retired in recent years.

So, based on my sample of one, I’m thinking there is no reason to be involved with either the RO or urologist after the first couple of years unless the PSA increases or there is some specific issue.

Jim
Posted 7/10/2023 3:17 PM (GMT 0)
I had persistent PSA post surgery and then salvage radiation immediately. That was 5+ years ago and my PSA has been undetectable since. However, I developed radiation cystitis so I stay with the RO and the Urologist for annual checks. No plans to stretch it out at this point.
Posted 7/16/2023 7:36 PM (GMT 0)
I had surgery followed by radiation. I think I probably had a follow-up visit with the RO a few months after completing the RT, but after that I went only to see the urologist. After 2 years I quit seeing him and now just go to my primary and get PSA testing with through her. When you meet with the RO, what happens? Are they monitoring for side effects? I wonder why that is useful, since the patient will likely notice any adverse side effects.
Posted 7/17/2023 12:40 AM (GMT 0)
My URO’s practice in 2018 had a printed sheet that covered 5 years, the first two years with 3 month PSA’s. My guess is that the first 2 years are where most of the issues take place for most men plus they like to give you the forms to fill out for urinary status and ED progress.

I have noticed recently that Mayo and others are only doing 3 month PSA’s for a year and going to annual just after a couple of years. Mayo does not spend much time with patients and sends them back to PCP pretty quickly, not a lot of hand holding as they are always on to the next patient.
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