The Long Road Continues

I'm nearing the 28th year since my original prostatectomy, as of my writing this. If I had been told then that I would live to be 78 I would have said, "great, I'll take it." But now that I'm on the threshold of my 78th birthday, I selfishly want more time.

I have generally good health despite the recurrence of my cancer eight years ago, and I'm able to exercise, socialize, and enjoy my life overall. I have written in the past about the pluses and the minuses of living with prostate cancer and have tried to put a fairly balanced spin on it. But while I'm doing well, the road ahead keeps getting more complicated both in regard to treatment decisions and to my personal life.

Watching my PSA rise

On the treatment side there have been enormous advances in the past few years. This is a blessing and a conundrum. In the support group that I facilitate, the conversations get more and more complex. On average, the people that regularly attend the group demonstrate a great degree of self determination. Most of the group attendees have read and studied about their cancer; and many, if not most, have gone to more than one provider and/or institution to aid them in their treatment decisions.

We generally applaud their getting enough input and education to feel good about treatment decisions. The goal is allowing people to be truly comfortable with their plans, and to try to be sure they don't regret making decisions too quickly or too slowly.

For me, after 5 months of androgen deprivation therapy (ADT) following radiation to a solitary spinal metastasis, I have watched my prostate specific antigen (PSA) rise from undetectable to .78 ng/dl over the past two years. In addition, I've undergone periodic PSMA Pet Scans which have yet to reveal any additional metastases, as of my writing this. However, as the PSA rises, I know each new test and each new scan will demand new decision-making.

When, not if, I need to restart therapy

The question will be when, not if, I need to restart therapy. At what PSA value will treatment become critical? Will restarting ADT too soon speed the cancer eventually becoming more resistant? Should I only restart treatment when metastases show up? Will my one year doubling time for PSA soon become shorter? Is my local urologist's opinion enough? Should I go to another major center to help with the next decision? These are the questions that bubble up every month or two as I repeat my PSAs.

On the personal side, since I'm not currently back on ADT, I'm able to have a reasonably active sex life. But the question remains how long can I wait before starting the medicine that will again markedly decrease my libido and make it physically harder to achieve a successful erection.

We live our lives one day at a time, and I cherish the reprieve from the hot flashes and fatigue that accompanied my previous ADT treatment. As each new blood test approaches, my partner and I revisit the reality that sooner or later, probably in 2025, I'll enter the permanent treatment phase. This means both our lives will change.

Not discussing these changes would cast a cloud of distrust over our relationship. Whether we like it or not, treatment decisions are not ours alone and need to be made in an open dialogue with our partners/spouses. For this reason it is always encouraging to see our support group members attending with their partners.

Anxieties and fears

No two journeys on the road of prostate cancer are the same. But we all share many of the same anxieties and fears. My questions and decisions aren't unique, but they do echo the concerns that arise weekly in our group. And while there is no professional medical advice given at our sessions, they do provide a safe place to address many of these medical and personal questions.