Active Surveillance Is Over For Me - Advanced Prostate...

Advanced Prostate Cancer

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Active Surveillance Is Over For Me

Fox2018 profile image
20 Replies

Hello Everybody

Age 66 and in good general health. No diabetes and not overweight. Only take two medicines at a low dose: Lisinopril and Simvastatin. Sixteen months ago a nodule was felt during annual physical. PSA was 0.90. A biopsy done fifteen months ago showed one core (of 12) with 10% Gleeson 6 (3+3). Did Active Surveillance with a full body bone scan, Prostate 3T mpi MRI, and pelvic MRI and everything was clear. Did 3 month PSA checks since then and they have stayed at 0.90. Went for a one year follow-up biopsy on August 27th and got the following results:

TRUS biopsy - 12 specimens - #1 right lateral base, Prostatic ductal adenocarcinoma, Gleeson's score 8 (4 + 4), Grade Group 4, involving 1 of 2 cores and 10% of the tissue, perineural invasion not identified - #9 left lateral mid, Prostatic adenocarcinoma, Gleeson score 6 (3+3), Grade Group 1, involving 1 of 1 core and 10% of the tissue, perineural invasion not identified - #11 left lateral apex, Prostatic adenocarcinoma, Gleeson score 7 (3+4), Grade group 2, involving 1 of 1 core and 10% of the tissue, 5% of pattern 4 identified in Gleeson score 3+4=7 cancer, perineural invasion not identified - all other 9 samples benign prostatic tissue, no tumor seen - cancer appears to be confined to the prostate

Went to see my doctor two days ago after taking a 3 week long vacation in the Canadian Rockies. He is the Chief of Urology at a center of excellence cancer hospital in Philadelphia for a consultation. We decided not to do radiation (I want it as an option down the road) or focal treatment (scans do not show a defined local area to treat with HIFU or Cyberknife).

So, I am scheduled for robot assisted laproscopic removal of the gland on 11-21-19. Time to do get serious about doing my Kegels. I have a lot of reading to help me with my decision. One of the best books I found is "The Decision" by Dr. John C. McHugh. He is a practicing urologist/surgeon who has prostate cancer. I recommend it to help as a guide to all of your options if you are newly diagnosed.

Mike

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Fox2018
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20 Replies
Costarica1961 profile image
Costarica1961

Mike my situation was similar to hours and I elected to have the same procedure 3.6 yrs ago. If I had crystal ball at the time may have thought longer and harder although it went well there was at least for some significant life changing side effects such as incontinence for two years. Not all guys have this. In addition to a absolute inability or desire for my second favorite thing in life, sex. I mean literally if there was a porter house steak or the most beautiful girl in the world other than my wife well I choose protein, bon appetite. I dont have near the knowledge of some of the brain trust on this forum but I wanted to share from, at least my experience. Would I do it the same again the answer is yes although would of mentally and emotionally tried to prepare for my new life. Kegal onward

Fox2018 profile image
Fox2018 in reply toCostarica1961

Thanks for your fedback. Glad the incontinence issue is better for you. Any advice for dealing with it when it comes for me?

Fox2018 profile image
Fox2018 in reply toFox2018

Feedback...

Tall_Allen profile image
Tall_Allen

If you are in Philadelphia, I suggest you also consult with Eric Horwitz at Fox Chase. There are certainly good salvage treatments after radiation failure. In fact, the cure rates for high risk are much higher with brachy boost radiation than for surgery. But ductal isn't like ordinary high risk; it can escape more quickly - perhaps a combination of radical treatment with systemic therapy (docetaxel and ADT) can get any stray cells that have escaped.

BTW - Cyberknife (SBRT) is a whole-gland therapy, not focal. However, there is no data on its use for ductal.

Fox2018 profile image
Fox2018 in reply toTall_Allen

Thank you - I appreciate your comments.

E2-Guy profile image
E2-Guy

Mike, What was your August 27th PSA? Unusual to see a Gleason 6 with a PSA of only 0.90.

Fox2018 profile image
Fox2018 in reply toE2-Guy

Hi - it was 0.90. - PSA has stayed below 1.0 for the last 12 years?.

Mike

babychi profile image
babychi

Hi Mike. I would fully investigate surgery outcomes and the side effects. Perhaps also read Invasion of the Prostate Snatchers. Surgery is an outdated method of PCa treatment according to my research on behalf of my darling. Urologists are watching their cash flow diminish. Please research before you decide. Then you will be fully informed and not influenced by someone who earns his income from what might be, for you and your partner, a debilitating and life changing procedure. Great outcomes to you.

Fox2018 profile image
Fox2018 in reply tobabychi

Hi - at age 66 I have made the decision to trade a real chance of possible cure for a year of inconvenience from incontinence which I can work to improve over time. Erections are frequent and strong before surgery - we will see what happens after! Thanks for your feedback.

Mike

babychi profile image
babychi in reply toFox2018

Hope all goes well.

dadzone43 profile image
dadzone43

You are making solid decisions. Good luck in your surgery. I am 11 months post-op with PSA remaining non-detectable.

Don't be another victim of the "Get it all!" gang. If you have detectable Pca it will have started little colonies all over your body because it is circulating in your blood. Yes - Stage IV already! That is why removing the prostate or blasting it with radiation does not change live expectancy or general outcomes. The horse bolted years ago. It's "in the rule book" so these guys are allowed to remove cash from your pocket without fear of being sued for trashing your equipment for no reason!

For now, your immune system is dealing with them and they have not become obvious, but that will change unless you can try a strict raw food and smoothie diet to see if that can hold the fort. Add Ascorbic IV's to help if needed. That course could leave you fully intact for many years. With luck and some time, your boosted immune system will encapsulate the cancer tissue in your prostate and put it out of action as scar tissue. Good luck!

Fox2018 profile image
Fox2018 in reply to

Thanks - I will add it.

Mike

KeyLimePieMartin profile image
KeyLimePieMartin

Why surgery? Radiation will reach further so why delay it while the cancer spreads?

Brachy and EBRT, but not Cyberknife (too strong for lymph nodes).

Be advised Viagra and Cialis will not work after prostatectomy.

jamanetwork.com/journals/ja...

prostatecancerfree.org/?gcl...

Fox2018 profile image
Fox2018 in reply toKeyLimePieMartin

Not concerned about the erections - have been able to pleasure my wife in many other ways for our 42 years of marriage!

Jimbo59 profile image
Jimbo59 in reply toFox2018

Invicorp injections work very well for me. 2Hrs or more of pain free solid erections gives plenty of time for associated joint pleasure!

(Caverject injections were way too painful by the way)

Pt3a unilateral nerve sparing prostatectomy march 2015 followed by adjuvant RT put paid to natural erections.

Some minor incontinence but not an issue really, now resolved apart from climacturia which apparently affects 40% of men after prostatectomy according to one study.

No loss of libido to speak of.

At 62 feeling as fit and healthy as a 30 yo.

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

The ball is in your court.... should you shoot it or pass it? The only advice I can give you is "whatever you choose, never ever look back". NEVER EVER say 'shoulda, coulda, woulda". When it's done it's kaput... over... fin.... So look forward and Laugh your ass off. So -

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/19/2019 1:49 PM DST

Fox2018 profile image
Fox2018 in reply toj-o-h-n

Thanks - good advice!

Mike

monte1111 profile image
monte1111

Maybe that should be the balls are in your court ... So look forward and Laugh your balls off.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

balls two... oops too...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/19/2019 9:02 PM DST

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