You're okay until you're not

[hwrjr]

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.

[Tall_Allen]

Your doctors are right. Biochemical (PSA) recurrence (BCR) is not the same thing as clinical recurrence. BCR is just a cue to test for clinical recurrence. Prostatitis complicates your use of PSA as a signal for recurrence.

[AlanMeyer Moderator]

Paradoxically, according to what I've read, men who take a long time to reach PSA nadir generally have very long remissions, amounting to cures. In my own case, once the neoadjuvant Lupron I was taking wore off, my PSA zoomed up to 0.8. Then it came down a bit, then it went up to 1.8. Eventually, more than five years after my HDR brachytherapy, my PSA reached a nadir of 0.07. Now, 17 years after the end of my treatment, my PSA still bounces around. My latest reading last December was 0.19, up from 0.09. I'm not worried because I've had so many bounces in the past.

Rising PSA after radiation can be caused by stressed and dying tumor cells putting out extra PSA. My RO, a research scientist at the National Cancer Institute where I was being treated in a clinical trial, said that about 1/3 of the patients he's treated with HDR do have bounces and he's seen them well above my apogee (is that the reverse of nadir?) of 1.8.

If it is the case that you are experiencing a failed treatment, waiting for the PSA to go above 2.0 to look into treatment seems justified to me. I don't know what treatments might be available to you but the most common treatment after radiation failure is ADT and that is likely to work just as well if your PSA is 2.0, or 4.0, or maybe even 10, so I think there's good reason to wait. Once you start ADT your PSA and other tests too may well be useless because your prostate cancer cells will be dead or quiescent under the effects of the drug. You could suffer the effects of Lupron for three years, get off it, find no increase in your PSA, and never know if that was because you had no cancer or because, somehow, the Lupron finished off the little that was there. I think I'd want to know for sure that I had cancer before I submitted to more treatment.

I know that won't calm all your anxieties. Cancer is not the kind of disease that we can easily face calmly. But I hope you won't get too anxious. Life is good - even if we do have some sleepless nights. We know it ends eventually, and we need to enjoy what we have, not worry ourselves into deep depression that ruins what we've got.

I wish you the best of luck.

Alan