Removal after Twenty Years: Well folks... - Advanced Prostate...

Advanced Prostate Cancer

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Removal after Twenty Years

Pmann profile image

Well folks, after diagnosis of advanced cancer in 2000, no removal of prostate, radiation and Zoladex, 2006 recurrence and chemotherapy, continued Lupron only until 2016, added Casodex for two years, then Erleada for two years, then Zytiga for two years and now with MRI revealed and biopsy confirmed recurrence of local cancer only, WE ARE GOING TO YANK THAT SUCKER OUT AND STOMP IT FLAT. DaVinci scheduled for 1/14/22. Never thought this would happen and really don’t know exactly what it means long term, but I feel good about it. Has anyone else ever had this done after so long or any concerns?

48 Replies

This is the first time I have heard of RP after all of those treatments. Good luck.

Pmann profile image
Pmann in reply to Magnus1964

Thanks much

Good for you. Most Docs. will not do this. Kudos to Your Surgeon. Even though I prefer Open versus Robotic---you are IMO, doing the very right thing---Should have been done over a decade ago--again IMO---only. You will not regret it. Easier to fight a few strays, than a Prostate, which is still putting out soldiers---no matter how many times you radiate the Prostate there always seems to be survivalist Cancer Stem Cells.Can you tell me who your Surgeon is/location please--we have men here looking for Surgeons who will do RP's in the late stages of the disease.

Nalakrats

Pmann profile image
Pmann in reply to Nalakrats

Dr Jeff Nix at University of Alabama Kirklin Clinic. He is my third urologist.

Rolphs profile image
Rolphs in reply to Nalakrats

What’s IMO?

User2008 profile image
User2008 in reply to Rolphs

In my opinion… IMO

Nalakrats profile image
Nalakrats in reply to Rolphs

In My Opinion--means not directly the word of the medical community but from my Research Work/or Knowledge/Experience--->comes from various sources, including the Medical community.

Nalakrats

j-o-h-n profile image
j-o-h-n in reply to Rolphs

IMO get used to the abbreviations.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/14/2021 12:46 PM DST

Rolphs profile image
Rolphs in reply to j-o-h-n

This blog is great. I'm getting an education on a lot of things.

Cheers!

j-o-h-n profile image
j-o-h-n in reply to Rolphs

Wait till you get the bill......................

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/14/2021 7:50 PM DST

The cancer seems to be castration resistant after all these treatments. I would request a PSMA PET/CT before surgery to be sure there are not distant metastases.

There are some options to treat recurrent cancer in the prostate which do not imply surgery. Brachytherapy and SBRT could be possible treatments. Perhaps you should consult with a radiation oncologist and a medical oncologist.

Pmann profile image
Pmann in reply to tango65

My MO requested the MRI and referred me to The urologist.

Also HIFU & Chiro are options and both can be repeated.

Has there been any type of biopsy recently? I'd be curious what kind of histopathology exists that it would result in that unusual procedure.

Pmann profile image
Pmann in reply to Anomalous

There has been a biopsy and I will ask that question, thanks.

Zytiga+ADT will shrink any distant metastases and render them invisible. Even so, if there were few of them (<4), there is a survival benefit to radiation treatment of the prostate (and presumably with RP). Most men would opt for SBRT because of the lower side effect profile.

prostatecancer.news/2018/09...

Pmann profile image
Pmann in reply to Tall_Allen

Thanks for your feedback TA, much appreciated.

Good luck to you Sir, I wish I would have had my prostate out back in 2011 instead of going on the ADT track with its various side effects.

Lulu700 profile image
Lulu700 in reply to ARIES29

Hey Aries29 ! I am happy that I didn’t have mine out when I see so many men do an RP the still needing every other treatment.

JPOM profile image
JPOM in reply to Lulu700

ditto. GL 4+3 three yrs ago; uro-onc, put me on a combo of casodex 50mg/day, finasteride and tamsulosin for over 3 yrs, PSA went undetectable and still is.

Lulu700 profile image
Lulu700 in reply to JPOM

Bravo! 👏👏👏👍

ARIES29 profile image
ARIES29 in reply to Lulu700

Yes lulu, back in 2011 my reasoning was on family so I kept it & my beautiful daughter came along in 2012.Not knowing the reason at the time fate was in control.

Lulu700 profile image
Lulu700 in reply to ARIES29

That is beautiful! ❤️

Pmann profile image
Pmann in reply to ARIES29

I am just glad to be aggressive for a change even though more SEs come with it.

Lulu700 profile image
Lulu700 in reply to Pmann

Tap dance it into submission! APC deserves no less! 🤞🏼🕺

Hailwood profile image
Hailwood in reply to ARIES29

It’s not always so easy to understand options. As having a RP in my case theoretically solved the issue then a PSMA scan showed distant métastases so the ADT started as well. It sometimes just seems to be the luck or the unlucky of the draw, to which option you chooses. My choice was removal of the gland as IMO radiotherapy prior to surgery potentially makes later removal more difficult. But it appears as your 10 years of survival may well outlast my own prospects. What a difficult disease this is. Perhaps Voltaire summed it up by “Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing”

ARIES29 profile image
ARIES29 in reply to Hailwood

Yes, too true. Luck of the draw, as we go on this journey it is easy to look back in hindsight & think { I should have done that}. It is obvious that even the mo are still learning from us with all the different options.

We were informed that removal may cause “seeding” of minute cancer cells to other areas. I guess you have considered possible consequences i.e. incontinence? Removal was never an option we considered as many men had told him of their incontinence and erectile disfunction. We’ve changed our lifestyle a great deal and hope for a bit longer here in Australia. Good outcomes to you. He is G9, 5 years post diagnosis. 39 EBRT, Zoladex 96 weeks.

Pmann profile image
Pmann in reply to babychi

Thanks for your comments

Cooolone profile image
Cooolone in reply to babychi

I don't have any data to back it up, but was discussed with my Surgeon and did read at the time that the idea of "seeding" has been debunked, or is very low (<1%)...

Do you have any data or studies to collaborate the information you were given? I'm curious, not debating.

Thanks

babychi profile image
babychi in reply to Cooolone

Cannot recall who informed us, after several appointments with various medicos. We got so overwhelmed with the subtle push for our money (surgery in private hospitals and overtesting) and eventually chose a man who offered us hope without empty promises. He consulted where I volunteered, at a local hospital with a fine Cancer Centre. The only out of pockets were for PSMA PET scan and MRI. Every other treatment was no cost. The Urologist our GP referred us to seemed to be only interested in how much we could afford to spend on surgery. We are happy with our decision and of course weighed up all the pros and cons. It was an awful time for us both but after 5 years of healthy diet and exercise he is as good as he could be. I am grateful!

Ah - debunked. But then they follow-up with "or is very low" to cover their butts. What does that even mean? Either it is debunked or it is not.. Yes, No, Maybe - the life of a prostate cancer patient in one sentence...

Anomalous profile image
Anomalous in reply to dagreer

I'm a big fan of coolone, but I'm pretty sure Dr. Kwon said something about it in his last video with Moyad. Something about coming across a patient that had prostate cancer in his belly button where the robotic port goes in and his mentioning his reservations about it. There is a paper on it that doesn't really give a conclusion in the synopsis. Maybe somebody has the full paper. pubmed.ncbi.nlm.nih.gov/318.... He expressed reservations about me getting a biopsy of a recurrence, I think for that reason, if I remember.

Cooolone profile image
Cooolone in reply to dagreer

Is true... What is and what might be, isn't really a possibility at all, but just possibly may be a could be!

Debunked because if you look for the data, the association with a <1% chance is considered basically zero! But then, when you take my situation with PCa presentation in the Peritoneal, one of the only references I could find was a case study of a male in Japan who once diagnosed didn't survive very well because when the Peritoneal spread of PCa was found it was pretty well developed. The interesting thing is some notes about the RP procedure needing to follow methodology to prevent possible seeding as they could find no other reasonable idea as to the spread. So you take study data, and then look at a real situation and try to make a reasonable conclusion. Fact is, there's no way to know because they're not going to do a study to say RP is unsafe. Another thing I came across some time ago was the process being used whereas blood was passed through a chelation filter to try and catch loose cancer cells possibly circulating during surgery. Think it was in France... Now why would they do that if there was no concern about letting loose cancer cells that could possibly become a problem later. But then you need to consider how loose cells really can't attach and do that type of thing for the most part as blood vessel and other cell function is required to keep the cell alive... I know I'm bouncing around, just spitting out thoughts as they come.

So yeah, pretty much debunked, with the door slightly ajar for a maybe, because you never know! Lmao! :D :D :D

For robot surgery they put the prostate in a bag before pulling it out of the hole to stop the spread - and other reasons like to keep it all in once place and together. But pulling the instruments in and out of the hole can contaminate as well. I do not think they have done any really good studies to understand the contamination levels and injection points.

Im a bit confused....blame it on lupron etc...1. If you failed other treatments what was causing that?

2. At dx were u ogliometastatic?

3. The hystology of your original dx is very important an u should know...i was and am ductal w mets... with pin...not touching my prstate ..

And lastly it would take large balls to do that if dx was aggrrsive pc......and after 20 yrs you have anything that resembles balls......walk tall......just my 2 cents

I like the balls joke. Oh so tiny now. 😳

Theres the making of a blues tune...they sing of broken hearts..and a car that wont start...but apc and adt took my balls ..tore my life apart....lil harmonica playin...

Lulu700 profile image
Lulu700 in reply to Boywonder56

😂😂👏👏👏

1/14/22......Don't forget to bring a bottle of champagne to christen the mother ship farewell... Good Bye Mother Pucker.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/14/2021 12:59 PM DST

Pmann,

Was your first treatment EBRT? 16 years ago, my initial treatment was external beam RT and now i have a BCR (localized)…I am on ADT (firmagon)…MSKcc is recommending Salvage HD brachytherapy…Was that an option for you?

Bill

Pmann profile image
Pmann in reply to billy1950

Yes it was. Options presented tome were HIFU or robotic remova

billy1950 profile image
billy1950 in reply to Pmann

Could you let me know about the possible side effects of salvage robotic removal?

Thanks

Pmann profile image
Pmann in reply to billy1950

Yes sir I will update

Such an unusual case; you are going where (almost) no one else has gone before...Out of interest, what did your recent PSA tests reveal?

Best wishes with the removal of your beloved (?) prostate

Pmann profile image
Pmann in reply to NotDFL

Latest PSA only .8, but it has doubled twice in six months basically

Hi Pmann

First off, well done with holding out for 20 years 👍

You seem to have a good run with Zytiga. Erleada and Casodex 👍

All the best

Haniff

Thanks much

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