PSA "undetectable" for amost a year: Continue to monitor

@jc76
I agree with you that our specific cancer history and individual circumstances should determine how we are monitored and treated. Where I differ is that I don't believe we should blindly follow whatever a doctor recommends without understanding the reasoning behind it. I believe most medical decisions should be collaborative, with the doctor bringing the medical expertise and the patient bringing knowledge of his own priorities, concerns, and preferences.

For example recently, my urologist suggested that we continue sequential PSA testing every 3–4 months. I chose 4 months, so that was a collaborative decision.

Another example is my pathology. After my diagnosis last year, I decided to get a second opinion on the pathology after reading Patrick Walsh's book and learning about the potential value of having the slides re-read by another expert. My urologist had not recommended it. The second urologist I saw at City of Hope also did not initially see a need for a re-read, but I insisted on getting one.

Even more concerning to me, while my GPS test was still pending and before the pathology was independently reviewed, the City of Hope urologist recommended active surveillance based on what was then considered an unfavorable-intermediate-risk profile—and wanted to see me again in six months. I was shocked. I'm not a doctor, but I do know how to read, and based on my understanding of the NCCN guidelines, my risk profile did not generally qualify me for active surveillance.

Fortunately, I had educated myself enough to question that recommendation and seek additional information.

My bottom line is that I absolutely value and rely on my doctors' expertise, but I don't believe we should blindly follow the recommendation of any one physician simply because they are the doctor. Doctors are human, too. A doctor who sees you for 10–15 minutes may not know every detail of your medical history, may have a different interpretation of the evidence, or may not be fully up to date on the latest research and guidelines.

I believe the best approach is informed, shared decision-making: educate ourselves as much as we reasonably can, ask questions, seek second opinions when appropriate, understand the evidence and guidelines, learn from the lived experiences of other patients on outcomes and side effects, and then work together with our doctors to make the decisions that are right for our individual circumstances.

Ultimately, it is our health and our lives, so I think we should be active participants in the decisions that affect them.

@kjacko

Thanks 🙏 I too wish you continued success in keeping your PSA remain undetectable.

@soli
When I got my original diagnosis and treatment options they came from Urologist and R/O. My Mayo PCP said he is doing a lot of research and wanted me to consider a second opinion to help me decide for myself. I did get a second opinion. The second opinion doctors there agreed with Mayo but wanted more testing and ordered them to make a final treatment recommendation.

I then met with my PCP and we went over both opinions and went over my doctors research to come to a conclusion of what is best for me. Each time I meet with my PCP he goes over research he does ongoing about P.C.. Why because he said I want to be able to consult with my P.C. patients on the latest research being done so can be an asset to them.

I researched on my own questions and doubts or needed more information myself and then would bring to my doctors opinions on my research. So for me specifically I did not rely on blindly relying on a single doctor or imply to blindly follow.

My comment on using the medical profession was not referencing doctors but to not get your medical guidance from MCC of for diagnosis, treatments,, etc. Mayo Community Connect is to provide your specific journey with P.C. and any other forum yo uare on.

Not to tell someone which test to take, a diagnosis, prognosis, treatment. What I do is limit my suggestions and reference to test, treatments and and issues to my own personal experience not to give medical advise to others.

Getting into diagnosing a patient, suggest treatments, prognosis, should come from medical doctors. If you do research it also should come from medical experts and professionals in the field your are researching. But that research is usually statistics not your specific case, your specific body, and your specific medical and mental health history.

The policies on MCC are to share your experiences not give medical advise. That was my goal of my post. Doing your own research is great as I have done it all along. It allowed me to question of my medical doctors. etc.

Many times I read someone suggesting take this or that supplement or a drug you can get from here or there. That can really cause issues with someone as we are all different, different ages, taking different supplements, different medications.

I would ask medical doctors who have my full medical and mental health history, along with all my medications and supplements I am on who can say if a supplement is oky to take based on me the individual not a study. I asked about a supplement from ICD/Pacemaker group saying they take potassium and really helps with PVCs.

I then checked with my doctors about the discussion on MCC about potasium and they said your blood test already shows you are at the upper limits of potassium already and do not recommend you take it.

I asked about a Covid medication was told you can't take that as it contradicts your heart failure medication. Thus my stance on only your medical doctors know your full medical and mental health history.

I for one have great doctors at both UFHPTI and Mayo. My PCP is outstanding. I say to him you are spending to much time with me. His answer is no I am here for you. I am here to ensure you can asked anything concerning you health and I take the time to explain or suggest.

I guess just like we are all different in our bodies and response to disease and medicines, we also have different relationships with your with your doctors.

I saw an outstanding R/O and urologist at Mayo for my P.C. It was my Mayo PCP suggested a second opinion for my mental health and decision making.

UFHPTI gave a complete information hand out about their facility (over 20 years doing proton radiation), tons of research on prostate cancer diagnosis and treatments, and the two books every one talks about including the Walsh book to read and then come back with questions. I recommend to others with P.C. not to go there because I did but to asked for the free information and books they will send you on prostate cancer and fed ex it over night.

Blindly follow, not me, but use the medical profession for medical advice, yes. And then second opinions and my own research to discuss with those medical professionals who are the experts in their field. And if not happy with my doctors I will change my doctors.

Just gave some information to other forum posters about Jardiance for heart failure. Not to take it but why I was taking it based on the research that showed it was beneficial for heart failure.

I contacted my heart failure specialist who mentioned the research and thus was putting me on. He provide the exact studies and web sites to go on to research it myself. I passed that along to the person who was asking about my HF doctors research. What they said and I totally agree is it statistics and does not guarantee that all will have a benefit from it.

@jc76 Certainly, nothing you read here is a substitute for the advice of your doctors. This is about sharing your own story, which may well be entirely unique to you.

But it is true that if you read the literature and talk to experts there are many different opinions. In my case, I had a biopsy in 2023 that showed a single positive core with Gleason 6. My urologist felt this was a case for active surveillance, which I agreed with, based on my reading in the literature (I am a PhD biochemist/immunologist). Nevertheless, my PSA kept rising. At my next biopsy in 2025, they found 3 positive cores, one Gleason 8 and one Gleason 4+3. Quite a change! This obviously required action.

I immediately made contact with a Center of Excellence in New York City. Our hospital here is a good academic medical center, but not a COE for cancer. They were ready to do surgery, but before my scheduled date I had an appointment with my Urologist here. He insisted that a PSMA-PET scan was necessary before deciding on surgery.

While I had no objection to having a scan, they scheduled it for a month away. Then I would have had to wait for a follow-up appointment, then wait for surgery. I felt that time was of the essence, as having an aggressive tumor sitting there as a potential source of metastasis did not appeal.

The folks in NYC saw no reason to do a pre-operative PET scan. That made sense to me and I went down for the operation. More than a year later, my PSA is undetectable, <0.02. This makes it very unlikely that the PET scan would have shown anything beyond the primary site.

So, doctors can disagree and we as patients have to make the choice we feel is best for us.

@optimistic @soli
I hope you the best in your future journey and your continued success in your PSA tests.

What I am reading here from many is the differences in medical care. I can only pass on my experience with my experiences. I went to two different COEs and got excellent research, excellent care and medical advise. I cannot comment on the quality of care someone else got just compare it to my own.

I do know we are not suppose to come to Mayo Community Connect in lieu of professional medical doctors care and medical advise. No one on MCC should try to diagnose others and/or give specific medical advice. No one other than your medical doctors have you full medical and mental health history. We are to stay with our own personal journey with P.C. and what you learned that helped you make decisions and your outcomes.

I constantly suggest seeking second opinion because I did that myself and it helped me. I also promote the Decipher test because I had the Decipher test and drastically changed my treatment plan. I think important to stick with your research, doctor recommendations, specific tests you had and why, your diagnosis from your medical experts, treatments that you have personal experience with.
If you disagree with your doctors do more research from COEs. Then if you still need more (and I am one to promote doing it anyway) consider second opinions from C.OE.s.

Even though I was at a C.O.E. I did a second opinion from another C.O.E. who gave me tons more research information to help me decide and the two books that every one (Dr. Walsh) talks about as being excellent.

Good luck and seems you did exactly what was best for you but your journey and level of care and expertise was drastically different than mine.

@melvinw

Similar here. RALP in 2018. Postive PSM was the only thing notable. PSA mostly undetectable for six years. Never got to the recurrence level of 0.2. When the Hema Onc NP saw a recent rise in the PSA she suggested a NM PET, which revealed soft tissue thickening along suture lines and suspected a cancer recurrence. I thought it was probably just a first look at the suture lines without the prostate being there. Surgeon wanted to do radiation with no PSA mentioned. I declined. I'm 80 and will wait for a much more drastic rise in PSA before I even think about radiation or treatment. And I think 0.2 is the lowest level to consider for additional treatment.

@jc76 @optimistic
I completely agree that forums like MCC are primarily places to share our personal experiences—not to diagnose other people, prescribe treatments, or medicaions. I also agree that our doctors, who have access to our complete medical history, medications, test results, and individual circumstances, are ultimately the people best qualified to provide medical advice.

My point was really about the other side of that equation: I don't believe being an informed and active patient is inconsistent with relying on medical professionals. In fact, I think the two are complementary. We educate ourselves, ask questions, seek second opinions when appropriate, learn from the lived exepreiencs of patients on potential side effects and outcomes, then discuss what we have learned with our doctors so that we can participate meaningfully in shared decision-making. Your own experience is actually a very good example of what I mean.

Only 15 to 20% of patients in America have access to treatments at C.O.E's. which makes it even more imperative that patients educate themselves, ask questions, and seek second opinions, as appropriate.

I am two years post-surgery with an undetectable PSA, monitoring every six months. My doctor told me that if it does come back, they have to wait for it to be large enough to detect exactly where it is, and to target that specific area. In other words, they are not going to blast a large area with radiation if only a small area is needed.

I always wonder about insurance approving treatment or testing above what standards say is normal.

Congratulations!
I agree with your plans. I'm not using ammo unless I have a target or at least evidence of the enemy.
My fear would be assuming the cancer is in a location where it is not and radiating the wrong area.