You're ok until you're not

You’re okay until you’re not they say regardless of the trend.

After a disappointing PSA last week I spoke with my RO and Uro about the results. I have great respect for the Uro and he knows my concerns well as we have discussed my fluctuating PSA many times. He believes the numbers are just incremental fluctuations of the irradiated prostate still producing PSA and influenced by inflammation from chronic prostatitis.
The RO said much the same, reminding me of the Phoenix definition of biochemical failure of 2.0 plus my nadir of 0.75, and that the protocol is to do nothing until BCF. I asked if other tests such as the PSA3 urine test or PSA free would be useful at this stage and he said no. I asked if estimating the amount of PSA by weight in grams for a healthy prostate still applied and he said no to that too. Irradiated prostate tissue does not behave in a way that it would prior to treatment, he said.
He said that PSA fluctuations are not uncommon, especially those with inflammation. He reminded me that my biopsy showed evidence of chronic inflammation. He has patients who make new nadirs 8,9,10 years following treatment. He did agree that some data do show that patients who reach a nadir of 0.50 or less have a better prognosis. He also said that at 5 years post-proton treatment 96% of patients in the low to favorable intermediate risk (my category) showed NED. At 10 years it was 88%. I found that interesting; that the odds worsen with the passage of time. He said cancer can return at 10, 15, 20 years which is why he encourages lifetime testing.

From Harvard health publishing 2009:

“For the patient treated with radiation, the evaluation is a bit more complex. Often the value does drop to zero. If, however, the value is 1 or 2 ng/ml, it may be the case that some of the normal prostate tissue survived radiation treatment and is still producing PSA. If the value continues to rise, there is reason to be concerned that either cancer has spread outside the gland or the radiation treatment did not eradicate the cancer within the gland. Recent studies have shown that for optimal results, PSA levels should be lower than 1 ng/ml, and even lower than 0.5 ng/ml. Levels that are above 1 or 2 ng/ml 12 to 18 months following completion of radiation treatments are very worrisome, because they indicate that the cancer may not have been eradicated.”

At first reading I think it means that those treated with radiation can still have a functioning prostate generating PSA and have levels of PSA as high as 2.0 over their nadir and that’s okay. That’s the Phoenix definition of a BCF. But it also says that PSA < 1.0 is better and <0.5 is best. Studies back that up.
However, in the last sentence it gets confusing. “Levels that are above 1 or 2 ng/ml 12 to 18 months following completion of radiation treatments are very worrisome, because they indicate that the cancer may not have been eradicated”? Which is it: 1 or 2 that the author means to say is worrisome? Levels that are above 2 are certainly above 1, so why say “above 1 or 2?” Does the writer mean above 1 or above 2? And many have bounces at 12-18 months and settle down months later.
All of this to say that I concluded after discussion with my doctors that even if I were to have increases of 0.10 for the next 10 years and still not reach BCF, there would be no cause for intervention. Makes no sense to me.

I like your doctors’ explanations.

You are a long way from recurrence based on PSA (2.8), but no one wants to see an increase at any time. I think the toughest thing about radiation is having patience. Any one PSA reading for you is meaningless, so it is the trend to monitor. The fact you have jostled back and forth over the last several years and look to have had two bounces would be tough to deal with. But you went from 6.2 to .8 in a couple years and are still basically there now. You would like to be lower, but you are relatively stable, which is the objective. But, if your next few tests are increasing, then time to talk strategy.

I have been blessed to be PSA stable. When I started all this my doc said I would face two future high risk periods. The first would be in the 5-7 year range showing a recurrence. I have passed that time. He said the next would be the 15 year range. He showed me several studies regarding PCa and many other cancers showing it can be dormant for a very long time and then recur a decade or more later. In fact, a former business client went undetectable for 16 years following surgery and then at age 71 his PSA started going up. Several months later scans showed several Mets. Like our old friend Zufus always said...”the PCA Twighlight Zone”.

JNF said...
I like your doctors’ explanations.

But, if your next few tests are increasing, then time to talk strategy.

Thats part of my concern; there doesnt seem to be a strategy until BCF.

JNF said...
This is the time when watchful waiting is the strategy. If you have say three increases and are still far from nadir +2, then it is a good time to start talking about scans and potential treatment.

You were testing at six month intervals and now one year for the last two cycles. Have you asked about increasing the frequency? Would going to quarterly to more closely monitor the situation work better? /quote]

Do you mean 3 consecutives increases from my 2021 1.0 or 3 from my 2019 0.8? My RO said scans are out of the question until BCF.
I had planned to test quarterly this year but my RO suggested 6 month intervals.

HR, I tend to agree with others who support your doctor's calm regarding your PSA results. You are not at a BCR definition point but I do have a couple of questions that you might want to discuss with the RO:

1. The RO mentioned patients that didn't reach nadir until 8-10 years post PBT treatment. Most of us radiated guys here went for EBRT, SBRT, HDR Brachy or LDR Brachy...and most of us reached nadir much sooner than 10 years. I thought I was a long time at 6 years. Anyway, is there anything inherently different about PBT treatment that would cause a potentially later nadir?

2. Secondly, I recall anecdotally at some point a speculation that PBT nadirs tend to be higher than for other sources of radiation. This may be WAY OFF but...is it worth investigating that possibility for peace of mind?

Jim

Very interesting post. The anxiety of waiting is one of the most difficult aspect of this disease. I try to focus on what I can control, which is how I show up in the world. I wish you peace. I am 3 years post HDRBT and my PSA is 0.4. I am not going to worry about 10 years from now. Let's live today! Denis