Connect
← Return to PSA "undetectable" for amost a year: Continue to monitor
Discussion
PSA "undetectable" for amost a year: Continue to monitor
Prostate Cancer | Last Active: 9 hours ago | Replies (54)Comment receiving replies
@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.
Replies to "@jc76 I agree with you that our specific cancer history and individual circumstances should determine how..."
Connect
@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.