Seafood Lunch with an OLD friend, Pro... - Advanced Prostate...

Advanced Prostate Cancer

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Seafood Lunch with an OLD friend, Prostate Treatment choices (revisited) and "what would the urologist do?" (differently than he'd advise?)

greatjohn profile image
23 Replies

PHOTO IS OF ME AND A GREAT FRIEND I HAVEN'T SEEN IN 20 YEARS (1998) HE WAS PASSING THROUGH THE MIAMI AIRPORT AND WE GOT TO SPEND 4 HOURS TOGETHER GOING TO LUNCH AND HANGING OUT WITH MY PARTNER, RICHARD AND WITH MY DOGGIE, SPARKY. IT WAS AMAZING TO REMEMBER.

THE FOLLOWING IS COPIED AND PASTED FROM A PROSTATE CANCER GROUP MAGAZINE "PAACT" IN IT'S LATEST ISSUE. IT MAKES ME ANGRY..I WAS GLEASON SIX AND WAS NOT EVEN GIVEN SURGICAL REMOVAL AS A POSSIBLE (SENSIBLE) OPTION...IT WAS STRAIGHT TO THE RADIOLOGIST. READING THIS MAKES ME FEEL LIKE A MORON AS I DEAL WITH STAGE 4 AGGRESSIVE METASTATIC (OH, AND CASTRATE RESISTANT) PROSTATE CANCER. JUST WANTED TO PUT THIS OUT THERE...IT APPEARS THAT "DOCTORS" WOULD NEVER CHOOSE ANYTHING BUY ROBOTIC REMOVAL FOR THEMSELVES? THEY SEND THEIR PATIENTS TO THEIR RADIOLOGIST FRIENDS...TO SPREAD THE WEALTH...BUT WOULDN'T GO THERE THEMSELVES??? WHAT DO YOU THINK? OY...IT'S ALL ABOUT DESTINY AND $$$.

"3) WHAT PROSTATE CANCER TREATMENT IS BEST FOR ME?

I can only address my own personal situation. My prostate MRI showed two highly suspicious areas on the right and left side of my prostate. There is a relatively new prostate biopsy technique called Uronav that allows the urologist to superimpose the MRI image with abnormal areas clearly marked as “targets” with the live transrectal ultrasound. With this technology, the urologist can clearly sample the target areas seen on the MRI, as well as obtain other random samples of the prostate gland. My biopsy was performed in the office with local anesthesia. Although it was uncomfortable, I was easily able to tolerate the procedure with no major problems following the biopsy. My pathology report showed 7/17 biopsy samples (from both sides of the prostate) were positive of Gleason 3+3=6 prostate cancer. I knew the biopsy would be positive, but I was surprised that the cancer was as extensive as demonstrated by the pathology report. There were multiple areas of the prostate that looked normal on both the MRI and ultrasound that were positive for cancer. To me, this is very important since there are a number of potential treatment options (like HIFU and radiation therapy), that supposedly target the prostate cancer with minimal side effects. With the extensive cancer that I have on both sides of the prostate, I am very concerned that any treatment that treats less than the entire prostate will not be successful. I am also fortunate that my Gleason grade of the cancer is “mid-range” of 3+3 (total of 6). Cancers with a higher Gleason score (greater than 6), tend to be more aggressive with a high risk for spread (metastasis). Currently, although my cancer is bilaterally extensive in the prostate gland, it appears to be localized with a favorable Gleason score. For this reason, I plan to have a robotic radical prostatectomy early in February 2019. I believe that the surgical removal of my prostate offers the best chance for cure. Also, over the last few years I have noted some decrease in the strength of my urinary stream and a feeling of not always emptying my bladder completely. These are signs of the prostate causing some blockage to the flow of urine. Removing the prostate will eliminate this problem. Other treatments, like radiation therapy, will cause the prostate to “swell” and make this problem worse. Also, with aging, the prostate may continue to grow causing increasing problems with weak stream and bladder emptying."

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greatjohn
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23 Replies
Tall_Allen profile image
Tall_Allen

You've got this wrong. Urologists almost always recommend surgery. Radiation oncologists tend to be a bit more balanced, but often recommend the kind of radiation they are most familiar with. It is up to the patient to decide for himself after he collects all the info.

greatjohn profile image
greatjohn in reply toTall_Allen

LOL....my urologist got it wrong. Or just had a better friend as a radiologist. ☺ I was a bit naive going into this madness.

IrishDude profile image
IrishDude in reply togreatjohn

We all were.

I am not sure there is such a great difference in outcome between surgery and radiation... But probably if cancer is contained in the prostate surgery is the best option.

I also think sometimes: why did our doctor not do any PSA tests during 8 years !!!! after having had quite high PSA before (almost 5) and he just did not test anymore because it went a little bit down!!!! When he did the test again, because I asked, came out a T3b prostate cancer already out of the capsule....

But it doesn't make sense to look back (only to good memories ;-)), do your best you can do now, like this beautiful encounter, think of your vacations coming nearer. Think of what you can do now!!!

Greetings!

greatjohn profile image
greatjohn in reply to

that's why I focus on the friend from the past...this article I copied just came up today and thought I would share. My story with the urologist is even MORE complicated. After radiation he made some crazy misjudments based on my PSA NEVER going below 2....for almost 2 years before he admitted something was wrong...

I've had to let that go...the horse was out of the barn...so to speak.

Have a great evening,

John

greatjohn profile image
greatjohn

if "I could turn back time"...(a la Cher) That is exactly what I would have done.LOL

But it's in the past...so I don't worry too much about it....I just keep hoping for a time machine! That would fix EVERYTHING! or a better "cure"/"treatment".

** This Lupron/Xtandi/Xgeva gig ....S U C K S ! ! ! But, on a much more personal note...I have been feeling much better on it lately...my body seems to get used to anything. I'm only have the issue of "stress leakage". I saw an Urologist...and I am scheduled for the "Camera"...and a very close CLOSE UP. OUCH. This will be my first time for this kind of "Hustler"-Style close up ...of inside my pee pee (LOL)

gJohn

Grumpyswife profile image
Grumpyswife in reply togreatjohn

My husband had to scope up there in March and it was not a problem for him. No pain or bleeding or complications.

greatjohn profile image
greatjohn in reply toGrumpyswife

Thanks. Fingers crossed 🥰

farmanerd profile image
farmanerd in reply togreatjohn

I had a cystoscopy at the beginning of June to try to find out what was causing some frequent, but minor, hematuria. The procedure wasn't bad (lie back and relax) and I had a bit of stinging during urination for a couple of days afterwards. Amusing seeing the drape with a single hole in the center. My URO needed a second set of hands to control the dangly cystoscope and my dangly penis during insertion, but he was good and talked me through all of the steps that they were doing. Ended up that my anastomosis from my RARP was still spitting out pieces of absorbable sutures and consequently dripping some blood six months after the operation.

my.clevelandclinic.org/heal...

Tommyj2 profile image
Tommyj2 in reply tofarmanerd

Why the heck can't they numb you up( or put you out for a few minutes) during such a procedure... the idea of having ANYTHING passed into my urethra freaks me out : )

in reply togreatjohn

Great pic! Good luck with the procedure.

youtube.com/watch?v=5G4O5AM...

JamesAtlanta profile image
JamesAtlanta

That is a great photo! What a Wonderful day! So glad you enjoyed it!

Thanks for sharing!

James

greatjohn profile image
greatjohn in reply toJamesAtlanta

Thanks James!

SuppWife profile image
SuppWife

I wish we would have sought an open RP instead of robotic for my husband. Hindsight sucks.

ronnie1943 profile image
ronnie1943

Hi John.. Great picture! So nice to reunite with an old friend.

Lynn

gusgold profile image
gusgold

my URO is a practice of 2 Docs. My Doc is leaving for CA. I asked him to make an appt. with his partner and he told me not to use him because he does not know anything about PCa. The Docs at Mayo Clinic told me not to use the Cleveland Clinic for the same reason. I agree with Mayo because twice now I was given really bad advice by Cleveland Clinic

greatjohn profile image
greatjohn in reply togusgold

Wow.😎

Pierreb profile image
Pierreb

Hi John. My Dad had an RP and they thought after biopsy it was all encapsulated and no signs of spreading. Well a few years after RP we learned it had spread. I guess if we could go back we'd push for biopsy sooner, etc. I guess you never know and just have to make the best decision you can and hope for the best. I do agree on the destiny and $$$ aspect. On a positive note you look great and I'm glad your feeling better. Is your friend wearing an Argentina shirt? My parents are from Argentina.

greatjohn profile image
greatjohn in reply toPierreb

We need time machines!😊

Tommyj2 profile image
Tommyj2

Very Sorry about your situation but I don't know that recommending Radiation was irresponsible with a gleason 6... a lot of docs might have recommended active surveillance..... from what I have been able to determine ( and there is ALWAYS somebody to say differently) at a gleason 6 external beam combined with Brachy should have easily equal results to RP..... I'm not hearing brachy as part of your treatment...... did I miss it....??? I too wish I could go back and make different decisions based on what I know today..... mostly I wish I had the choice to bow out comfortably WHEN I've had enough of this rather than spend the next several years of my life preoccupied with tests, medicine and limitations on my former activites....

IrishDude profile image
IrishDude

<<mostly I wish I had the choice to bow out comfortably ...>>

Boy, +1 to that for sure. I for one have had about enough of this already, and I am just getting started,

greatjohn profile image
greatjohn in reply toIrishDude

What I found interesting is that the urologist didn't consider anything else...just surgery.

No time to bow out...life goes on. The fat lady hasn't started warming up for her aria yet😊

Life is beautiful.

j-o-h-n profile image
j-o-h-n

I had many many stents up and out of my wee wee. No problem at all... except your legs in stirrups. Not to worry...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/19/2019 1:27 PM DST

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