First ED, Now Prostate Cancer

Hi folks, I'm Cigar. I've updated this note a bit after some excellent feedback.

I've been on this board in the past while battling ED (more on that below), and now I am back with prostate cancer. Man getting old is rough!

I have been expecting PCa. There is some family history, and I have been working closely with a urologist for several years as my PSA kept jumping around. Today (1-29-16), a hospital biopsy showed 1 of 12 cores positive for cancer. Gleason was 3 + 3 = 6.

The doctor says its a low-grade, non-aggressive cancer and that I'm not in any immediate danger. I was comfortable with that given my research and the discussions I had with the doctor following multiple PSA tests, an office biopsy, and two hospital biopsies.

Best news is that we caught this early, giving me options. Please, tell your friends to not ignore this disease and consult with their doctors. I have friends who decline to even get tested.

I am opting for Active Surveillance -- PSA every 3 months, biopsies annually. (Originally I wrote biopsies every 6 months, but that's too much, I'm told).

If that one little bit of prostate cancer starts advancing, or if we find more of it down the line, then I'll be ready for aggressive treatment. Hopefully the little booger will remain dormant by himself for years while we apply tight surveillance.

When I first wrote this note I was focused on surgery within 8-12 months. But the great vets here have advised me that treatment might not be necessary for quite some time. I like that.

I'll get another PSA in 90 days, an MRI for a better look at the cancer, and confirmation that the Gleason 6 score is accurate. If all that checks out I think I'll be a great candidate for surveillance for years to come.

So for now, I'm looking forward to joining in the conversations, learning and supporting!

Age: 59
Diagnosis: 1-29-16
Last recorded PSA: 8
Highest tested PSA over several years: 11
Gleason: 3 + 3 = 6
Enlarged prostate? Yes
Current strategy: Active surveillance.
Next steps in 90 days: Second opinion on the Gleason 6 score to confirm its accuracy, along with a PSA and MRI.

My race: African American -- important only because there is a higher rate of occurrence of the disease in AA men, and I want to raise awareness for everyone.

As for ED, I tried all the pills before settling on TriMix, a drug directed directly into the penis. Love, love the stuff. We'll see how Mr. Willy reacts to prostate surgery if that ever is necessary. I am confident TriMix will do the trick, but I'll move up to an implant if that's what it takes to stay in the game.

Live life loud!

Cigar

Post Edited (Cigar56) : 1/30/2016 6:41:48 AM (GMT-7)

Cigar 56,

You really ought to add some radiation guys to your dance card as you make up your mind. Chances are that any of the usual treatments will cure your little bit of prostate cancer (and you might be able to stretch that 8-12 months of AS to 8-12 years with luck). There is no need for you to rush off in all directions and some sorts of radiation might offer you a better story on possible side effects when and if you decide to treat it. You should, particularly look into brachytherapy or SBRT radiation as options.

Thanks all for the comments!

Allen: I checked my notes on the biopsy schedule. The urologist suggested possibly one in another six months and then annually after that.

Everyone: I realize now I was jumping the gun in setting an 8-12 months timetable for diagnosis to surgery. My immediate thought was to just get it over with in the next year or so, and the urologist said "sure," when I asked if I could put it off that long.

To be fair, she mentioned that I could have as much as a 10-year window if the condition remained stable, but I was literally in a fog by that time.

Peter, you are right, I should at least consider radiation. I called a friend who's now in his 70s. He successfully underwent radiation and now is cancer free.

Thanks for the input, guys.

I never had the "just cut it out" reaction..not once. No cancer panic..and I am not in a fog on doctor visits.
But then with a slowly, but steady rising PSA I did see it coming, but is sure wasn't a "kick in the gut"..not even close. So we all don't react in a panic. Just sayin'

Maybe only exceptional in the small group that sees fit to participate in these forums. Most of whom, as you allude to are already paniced. :)

Cigar, just adding my welcome. You've been given good advice. Stay on AS as long as nothing changes, and just make sure you are in a very structured program that will catch any changes quickly.
Good luck, hope you never need treatment.

And i echo Tall Allens advice to get a second set of eyes on the slides to confirm the G6, THAT is very important if you are planning on AS.

If you can ride that Active Surveillance for five or so years, you are also looking at advances in treatment options.

The ION beam treatment facility in Texas is supposed to come on line in 6 years or so. It has less scatter and presumably more accuracy and fewer side effects.

F8 said...
why surgery. you just want it out? surgery would be my last choice always, fwiw.

ed

Same here, but that is just my personal opinion- probably mostly formed from the SEs I have had, an opinion with which many would disagree.

Post Edited (BillyBob@388) : 1/30/2016 11:25:56 AM (GMT-7)

billybob -- i'm not going to dance around what I believe. it is also my belief that there are more regrets and SEs among the surgery group, and many of those guys end up getting irradiated later. of course my beliefs are based on my own treatments and what I have observed here in the last 5+ years, and many will disagree with me.

ed

"we are all a product of our own experiences."

A good thing to remember when giving advice as to treatment. No one here, not even Tall Allen has the experience and benefit of treating a large number of patients day in and day out as a lot of uros do , not all, of course. Granted , they may not spend the day reading the most recent papers and may not be up to the minute on all of the "new" findings, but they are more familiar with more different cases than any of us are.

Cigar, I have been on Active Surveillance for over five years, and the statistics from Johns Hopkins show that 66 percent of those in AS never have treatment over the 21 year history of their program.

Now, at age 59 and being AA, there may be additional cautions and monitorings for you, but you should not assume that treatment is inevitable. Please read the JH, MSKCC, Mayo, and NCI websites about Active Surveillance, and become as aware as possible to ask hard questions of your doctors about your case. And, if you have any doubts about their answers, then switch to a cancer center of excellence.

So far, you only have been proven to have very minimal non-life-threatening cancer. Do not overreact!

Good luck to you.

Welcome aboard Cigar!

If you have to be diagnosed with PCa, your results are the best because you have plenty of time to decide what treatment you may need in the future.

ALL treatments have side effects so take your time to decided when and how you will deal with it.

I had surgery but I don't like to tell anyone what THEY should do, it is a personal thing to decide between you and your family, not a bunch of guys on the Internet.

You will have time to hear other forum members stories to help you down the road which is great because most of us are much further along with cancer than you are now.

I am happy the you came out and told us you are an AA. Other lurkers need to hear that. As you know, AA males have a much higher risk of PCa than others.

Take care and again welcome aboard.

Bill from Florida

Hi Cigar,
I live near W Palm Beach. Had my surgery in Celebration near Kissimmee at Florida Hospital.

BTW, I had long term incontinence but an outpatient surgery took care of it. They installed an AUS (artificial urinary sphincter) that solved the problem.

Bill from Florida