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Prostate Cancer: Owning Your Own Care – Part 3

A three-part series that tells you what you need to know before you go see your doctor.

Part I Part II Part III
The Proverbial Grain of Salt Treatment and Regrets Don’t Fear Clinical Trials


Part 3: Don’t Fear Clinical Trials

Maybe you’re scared to death of a clinical trial because you don’t want to be the one who gets the sugar pills.  Very sensible; nobody wants a placebo in place of a drug that has the potential to help a lot.

Good news here: most clinical trials for prostate cancer don’t even use a placebo.  They either offer the standard of care – which may actually be better than what you are getting, if you feel that your current medical care is inadequate – or a new form of therapy that may be more effective.  Even better, about 80 percent of clinical trials for high-risk or advanced prostate cancer have a crossover policy.  This means that if the treatment is really showing successful results, all participants may be able to cross over and get the experimental treatment, too.

So, most clinical trials are a win-win; either you get the best standard therapy there is, or you have a shot at getting something even better.

Another statistic:  You live longer just being in a clinical trial.  Men with prostate cancer who take part in clinical trials are more actively involved in their care, and for whatever reason, they live longer than men with the same stage of cancer who feel powerless.  Passivity and powerlessness are not life-extending.

That said, there is no Yelp or Angie’s List for clinical trials, and maybe there should be.   Wouldn’t it be nice, if you were considering a clinical trial, to look at the reviews and find out things like:

“I call to talk to the doctor, and I never get through.  I’m put on hold forever, and I keep pressing One for more options, and nothing ever happens.”  Or,

“I had nausea and they wouldn’t call in a prescription for anti-vomiting medicine.”

Or, “this new drug may eventually help, but I had so many side effects, I didn’t hang in there.”

What should you do to find out more about clinical trials?  Start by talking to your doctor.  Some doctors never mention clinical trials to their patients.  They’re not on their radar.  Some doctors only think of clinical trials as a last resort if other treatments aren’t working.  That’s not the case anymore.  There are trials for men with intermediate- and high-risk men who don’t actually have a recurrence of cancer after surgery or radiation, but who might in the future.  There are also trials for other cancers – breast cancer, for instance – where men with prostate cancer can participate, because their cancer has the same faulty gene.

If you have metastatic cancer, ask your doctor about getting a biopsy with gene sequencing of your metastatic tumor, and then ask about a referral to a genetic counselor.  If you don’t get the answers you need, try getting a second opinion from another medical oncologist.

You may also want to see for yourself what might be available.  You can look at the clinical trials online at https://clinicaltrials.gov.