What now?

[RhodyV]

I had a radical prostatectomy in August 2017 and my first PSA was 0.08. My recent PSA was 0.22 and I am awaiting a consult with my urologist for further treatment. My Gleason score was 4+5 a 9 and I'm very bummed that I will need more treatment so soon. What happens now? What are my options for treatment? Feeling down.

[AlanMeyer Moderator]

I'm sorry to hear about your treatment failure. Gleason 9 cancers are very hard to treat. Surgery often doesn't cure the disease.

There are now two main options, one or both of which can be tried. One is "salvage" radiation. It offers some prospect of a cure but the odds are probably against it. The other is drug therapy, most likely androgen deprivation therapy (ADT) that reduces testosterone in the body, or reduces its availability to the prostate cells, or standard ADT combined either with chemotherapy or abiraterone acetate (commercially sold as Zytiga).

If it were me, I'd want to start ADT immediately. The ADT will slow or stop the growth of the cancer. That will give you a little time to find an appropriate doctor to continue treatment. It will have to be a radiation oncologist in order to try radiation, and it ought to be a medical oncologist to handle drug therapy. If you choose radiation, the ADT you start now will improve your chances for success with the treatment. Your urologist can administer the standard ADT right away and may be able to refer you to a good rad onc or med onc for further treatment. If you post information about where you live, someone here may be able to recommend good doctors in your area. If you live in the U.S. a good place to look for specialists is at one of the National Cancer Institute "Designated Cancer Centers" where a lot of the most advanced treatments are offered.

See: cancer.gov/research/nci-rol...

There are also great cancer centers in Britain and Canada. You want the best you can get.

The most common ADT drugs are injections of Lupron, Zoladex, or Eligard. There are slight differences between them but they all work the same way and have similar outcomes. They are generally preceded by a one or two week course of Casodex (bicalutamide) pills. Stronger than Lupron, etc. is a drug called Firmagon which lowers testosterone even further, and doesn't require Casodex to avoid the "testosterone flare" that occurs with the other drugs.

I am not a doctor and am not qualified to give you medical advice but, from a purely personal, patient's point of view, I would recommend the following:

1. Get started right away by calling your urologist for the quickest appointment he can give you to start ADT. Even if he can only give you a few minutes of his time right now, he can get you started on ADT and maybe give you a referral to his preferred specialists.

2. Call a nearby Designated Cancer Center for an appointment, if possible.

3. Start researching salvage radiation and ADT. You'll want to know as much about them as you can learn before meeting the doctors in order to ask more pertinent questions and to better understand what they tell you. You won't like either of the treatments since they both have unpleasant side effects, but they may give you a fighting chance against the cancer and many men have stood up to the side effects and led normal and happy lives in spite of them.

4. Join the HealthUnlocked "Advanced Prostate Cancer" group. There are a LOT of men on that group who have been through what you are going through now, who understand the treatments you are facing and, in more than a few cases, are still alive and walking around 5, 10 or more years after their failed surgeries.

Finally, you can't help feeling down. It's very common to be depressed, to have trouble sleeping, to feel isolated, and to be anxious. Almost everyone in your situation feels that way. However the treatments are getting better every year (which is one reason to seek treatment at one of the NCI Designated Cancer Centers where the newest treatments are often most available.) If you can keep going for a few years with aggressive treatment now, you improve your odds of living long enough to benefit from one or more of the newer treatments - immunotherapy, "targeted therapy", and maybe others that are coming down the pike.

I think you can count on sympathy, advice, and friendship from the other members of HealthUnlocked. On behalf of all of them, I wish you the best of luck in your fight against this disease.

Alan