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

Your decision to not do adjuvant salvage radiation is a reasonable choice given your clinical history.

So is your decision to stretch out the frequency of PSA tests and consults.

We all "hope" that you are in the 50% group where there is no recurrence.

Waiting also supports medical research doing its things and if, when , your clinical data indicates a treatment decision is necessary, you may have more choices.

So for now, enjoy your life but have a plan to keep an eye on things.

I have two close friends who had surgery around the time I did. 12+ years later, they see their urologist once a year, their PSA tests are "undetectable, " so, they talk about vacations, grandkids, sports...

Me, my MSKCC nomogram said 70-30, the former being I would not have BCR, the latter I would.

12 years later, SRT, triplet therapy and doublet therapy, here I am.

As to the radiation side effects, my SRT, PLN and SBRT resulted in 69 treatments, 155 Gya...side effects, none. The state of the art with respect to planning and delivery is pretty sophisticated. In the hands of a good radiologist who has a good team (I do), there may (should) not be any issues, just saying.

This may be of interest - https://pmc.ncbi.nlm.nih.gov/articles/PMC8996903/

Kevin

That is an excellent paper. Thank you for posting the link.

@optimistic

You're welcome, the value of this forum, sharing information, ideas, experiences.

We are better together!

Kevin

@kujhawk1978

Here’s a polished version that keeps your warm and appreciative tone:

Congratulations on remaining recurrence-free for more than a decade, and on your successful treatment after your recurrence more than 12 years later.

And thank you for sharing that excellent study on the differences and potential trade offs between adjuvant radiation and salvation radiation to treat BCR. It was very informative.

@kujhawk1978

Congratulations on remaining recurrence-free for more than a decade, and on your successful treatment after your recurrence more than 12 years later.

And thank you for sharing that excellent study on the differences and potential trade offs between adjuvant radiation and salvation radiation strategies to treat BCR. It was very informative.

Thank you too for sharing your experience. That was very helpful.

And I wish both of us will be among the more fortunate 67% group that do not experience recurrence.

With all due respect to the many great doctors and cancer centers out there, we should never forget that the identification, quantification, and assessment of what is wrong with us is done by remote sensing and left to the interpretation of more or less qualified people. Zeroing-in on the truth, to the extent that can be done (it does get better every year), involves second opinions and careful consideration by the patient. So let's know as much as we can, and talk to the best people we can find.

No question about that. Most doctors and medical institutions are overworked and understaffed, and physicians often have only 15–20 minutes, or even less, to spend with a patient. In addition, prostate cancer diagnosis and treatment are evolving so rapidly that it can be difficult for any physician to keep up with every new development.

I had a very good surgeon for my prostate cancer, but he never mentioned to me the potential importance of exercise, diet, or sleep in reducing the risk of recurrence. I did that research on my own and shared, for example, my “anti-cancer diet” with him. He looked at it carefully and said it was a great idea.

Bottom line: our lives are at stake, yet our healthcare system is often overwhelmed and focused primarily on diagnosing and treating disease rather than prevention. We therefore need to take some responsibility for filling those gaps—by seeking second opinions when appropriate, learning from other patients’ experiences, keeping up with the latest research and standards, and attending educational conferences such as the upcoming PCRI conference.

The goal is not to replace our doctors, but to become informed partners so we can work with them to get the best care possible.

@soli I don't know about the practice where you go, but as long as all they're doing is monitoring PSA and it remains undetectable, you are likely seen by a PA or NP, not a doctor. I'm not complaining, by the way-I'm happy having a situation that so far doesn't require a higher level of care.

For the first year, I was followed by the surgeon who performed my prostatectomy. Even then, since any potential future treatment would likely involve a radiation oncologist, I decided to consult with a prominent radiation oncologist to discuss my thinking about using an early-salvage approach if my PSA becomes detectable, rather than automatically undergoing adjuvant radiation as soon as I recovered from surgery. I also asked about potential clinical trials and other treatment options.

Now that I am entering my second year, I have started working with a PA. He told me that I can continue to follow up with the surgeon if I prefer, but I chose to work with him because he seems to have more time for discussion and because I am seriously considering transitioning my follow-up to a radiation oncologist anyway.

I am thinking about working with a good radiation oncologist to revisit my BCR monitoring strategy, including whether to use ultrasensitive PSA or conventional PSA testing; what PSA threshold should trigger treatment—0.2 or perhaps even lower given my high-risk pathology and biology; whether there should be a specific threshold, such as 0.20 or 0.15; and whether PSA doubling time should also factor into the decision.

For me, the goal is to have a well-thought-out plan in place before I ever need treatment, rather than trying to make these decisions after the PSA starts rising.