The Two Most Important Days with Prostate Cancer ~ For the Newbies!

After attending an UsToo meeting this week, a guy came in that was recently diagnosed.  His Gleason was 6 and his PSA barely above warning at 4.2.  His doctors within a week were trying to hustle him straight to surgery.  They gave him a week to start the scheduling and have an open surgery. 

I write this one as a vereran of the disease and this site.  I have literally seen hundreds of new guys here, and many treatment modalities.  I have seen some fast decisions and some guys who took their time, and carefully planned out their course.  I was somewhere in between.  Leaning towards planned out, but I still wanted the cancer out of my body as soon as possible.

When we are told we have cancer, we react.  And I am now smart enough to tell all the new guys that knee jerk reactions are not common sense.  The day of my diagnosis changed my life forever, thus it was important day number one.  How it was going to change my life was still undetermined.  From what I have learned in this experience is there is one advocate that will always be on your side ~ and that is you.  Your next most important day will be the day you decide on what you will do about your prostate cancer. 

Unless you have a Gleason 7-10 or a PSA over 20, you have plenty of time to decide.  And even with any gleason or PSA you need to educate yourself about the disease.  You need to know the treatment modalities, what their side effects are, and what you will do if they fail.  By planning your road map, you will have peace of mind.  By understanding prostate cancer you will have knowledge about what modality will best work for you. 

There is one action I recommend in between the diagnosis and the decision ~ a second opinion.  Any action you take will affect you for the rest of your life.  As one urologist said to me, you are always at your best before treatments.  Meaning that as well as I am with ED and incontinence today, is the best I can be after treatment and that's if things go extremely well.  And no matter your modality ~ surgery, radiation, cryo, seeds, or watchful waiting ~ anything you do should be an educated decision.

As for the guy above? He had plenty of time to react.  Even up to 6 months.  He could enjoy the best of where is now and time to learn about treatment options and keet a close eye on the disease progression, and still go after the cure.

Tony

Great ponts, Mavica,
It is collaborative information from experts that is needed to make a decision on what to do about your prostate cancer. I do believe that many patients go with what they are first told from a doctor, however. In our meeting, a urologist was present and concurred that education was key to good decision making. And though it is ambiguous to say "experts", one must remember that they are experts only in their field of practice, usually not all modalities. And through accounts from patient testimonial you can achieve a better understanding of many things. I certainly hope that when a doctor says "90% of my patients are continent and with out ED" that patients are aware of the right questions to ask. For example, if a patient is also on heart medication that precludes his use of the big three ED drugs ~ will he have a shot at being one of the 90%? Because it's well known that "90% no ED" can be achieved through those drugs, pumps, or needles, and that it is a likely case depending on the selected modality.

In addition, specialists are great at answering technical questions about their modality only. So looking into each modality, a decision is best made on information provided by experts of each modality you are considering. And it won't hurt to get patient perspectives of that modality as well.

There is no templates. And there are many options. and none that can be fully understood in the time frame afforded to my example in my first post.

In my case I listened to everything the doctors told me about the side effects of surgery. And after surgery I quickly regained continance and slight ED. But I was not completely prepared for what followed. Because I have advanced prostate cancer, I needed hormonal therapy, and also radiation. Some doctors would argue whether I needed to do anything after surgery. Others would suggest adding chemotherapy to what I elected to go with. I was even pointed to experimentals and studies. I had to get to where I needed to be by going further than what the experts said. At that point I was reading studies and comparing notes and statistics from major institutions and payed attention to patient accounts. Now I do understand, I wrote this thread for the first phase of prostate cancer. Because of the contraversy in the medical community surrounding the stage of the disease I have, who do I trust? I do like my oncologist and I am comfortable with him.  But unfortunately, I still can only go with what makes sense to me after I review each and every option.

Tony

I could not agree more with Tony and Bill.  After spending four years in the medical field while in the Navy I realized that not all docs are created equal.  Never forget that the person who finishes last in their medical school class is called doctor.  Even if one is fortunate to find one of the best doctors in the world the best thing a person can do for themselves is learn everything they can about their illness or disease so that you make the best decision at each step of your journey.  Doctors are like any other group of people , some are much more competent than others.  You and you alone are your best advocate.

- John