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Prostate Cancer: Owning Your Own Care – Part 2

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 2: Treatment and Regrets

Here’s some good news:  A report from the Prostate Cancer Outcomes Study found that the vast majority of long-term survivors of treatment for localized cancer don’t have regret over how they chose to be treated.  But some of them do.  Why is that?

Some men in this long-term study said they regret the treatment they got because they had side effects such as incontinence and erectile dysfunction (ED) after surgery, or ED and rectal damage after radiation therapy.  Keep in mind that these men had treatment 15 years ago.  Surgery and radiation therapy have improved considerably since then, so what they experienced may not be what you will experience if you get that same form of treatment.  What kind of regrets are we talking about?

Likely Scenarios 

  1. Many men are treated for localized cancer, their cancer is cured, they have some minor side effects, and over time, these side effects either go away on their own, or get better with treatment.
  2. Some men are treated and they have side effects that make them miserable. They regret not looking for a better surgeon or radiation oncologist, or maybe they picked one form of treatment and wish they had gotten another instead.  If you are in this group and you have incontinence or ED, there is help for you, ranging from medical help with erections all the way to an artificial sphincter that will stop urinary incontinence and a penile prosthesis for a guaranteed erection every time.  There are treatments for rectal problems, as well, including surgical procedures to help with fecal incontinence.  Don’t despair.  It doesn’t have to be this way forever.

And then there’s C.  Some men don’t get adequate treatment, and their cancer is not cured.  Even here, there is so much hope

The goal for you, if you are considering treatment options for localized prostate cancer, is to be in Group A.  And – this is very important – if you have low-risk disease, you may not even need treatment right now.  Maybe you won’t ever need it.  You could be an excellent candidate for active surveillance.

Don’t Walk In Cold

To make sure you do the best thing for your own individual prostate cancer, you need to educate yourself.  If you just really hate the subject and would rather pretend it didn’t exist and never even think about, then your best hope is to have a really good friend or family member read up on prostate cancer.  Somebody needs to get a crash course in prostate cancer.  Here are some reasons why:

* Knowledge will empower your BS detector.  If your doctor tells you that ADT is what you need and you know for a fact that you have Gleason 3 + 4 grade cancer that is confined to the prostate – and most likely completely curable with surgery or radiation, you don’t just have to accept that doctor’s advice on faith.  You’re not a prisoner of that doctor’s opinion.  You’re free!  Find a different doctor.

* You walk in the door ready to start the conversation at a different level.  You don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean.  You already know.  You can have an intelligent discussion about the merits of surgery vs. radiation for your cancer, your likelihood of being cured, and the risk of side effects.

* You will know if you are at higher risk of aggressive cancer because cancer runs in your family, you have a family history of prostate cancer, and/or you are of African descent.

* You won’t blindly accept the opinion of a non-specialist – a urologist’s take on radiation, or a radiation oncologist’s estimate of your odds for being cured with surgery.  Instead, you will know that you need to talk to a radiation oncologist about radiation, and a urologist about surgery or active surveillance.  In fact, you will know that your cancer may require a team approach.

* You may even be emboldened, as we hope you will be, to ask about that doctor’s cure rates with men whose cancer is like yours.  How long does your doctor follow his or her patients?  The best urologists and radiation oncologists keep tabs on their patients for life.  They know if someone has a rise in PSA after treatment – and, if that happens within five years, they know that more aggressive treatment is needed.  They know that if it happens 10 or 15 years down the road, the good news is that man probably has a local recurrence of cancer that is most likely very treatable.