New member : Hi my name is rich 49 yrs... - Prostate Cancer N...

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Teambaratta profile image
13 Replies

Hi my name is rich 49 yrs old and i have a gleason 8/9 , just had an prostatectomy w extensive lymph nodes removal i am 2 weeks out of surgery and seem to be doing ok . Next is a colonoscopy to check my colon and to prep for radiation, depending on my next psa .. it'll be great to hear from guy's that have gone thru this and can give me some guidance .. thank you and god bless you all

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Teambaratta profile image
Teambaratta
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13 Replies
Darryl profile image
DarrylPartner

Hi Rich. Welcome. You now have a bunch of new brothers. Given your Gleason score, allow me to suggest that you also join our advanced prostate cancer community

Teambaratta profile image
Teambaratta in reply to Darryl

Thank you Darryl i believe im already in the group i look forward to getting to know everyone ..

Don1157 profile image
Don1157

Welcome Rich! Ask anything of anybody, I had radiation as first line treatment, it went well. Did get some inflammation of the colon, but OTC meds helped. Good luck, I expect they will treat you aggressively.

Teambaratta profile image
Teambaratta in reply to Don1157

Thank you Don im seeing a few people are going thru radiation and come out of it good so it gives me hope that i will to..

tjdillon profile image
tjdillon

Rich - I suggest investigating SpaceOAR, a gel insert placed between remaining pelvic tissue and rectum to protect the rectum from unwanted radiation during your salvage radiation procedure. Your radiologist should be familiar with this technology.

Teambaratta profile image
Teambaratta in reply to tjdillon

Thank you ill ask about it .

BrianF505 profile image
BrianF505

Welcome to the group Rich. Great bunch of people here with gobs and gobs of experience and info so ask away!

15th Anniversary coming up in a couple weeks. Diagnosed at age 44, Gleason 7. Been through the ringer and back. Currently on Xtandi almost 4 years. Fatigue has been the biggest problem. But acupuncture and some Chinese herbs have helped some.

Having had radiation (a couple times), I found Metamucil helped with diarrhea and sits baths for general rectal discomfort along with some hemorrhoid cream/suppositories.

Teambaratta profile image
Teambaratta in reply to BrianF505

Congratulations on your anniversary thats amazing i have a friend thats 10 yrs in now and still going strong such as your self .. guys like you abd him keep people like me hopeful that no matter what i can get thru this one day at a time . Oh heck yeah fatigue has been a nasty sneaker, it creaps up on ya and tjen your qondering qhy you feel so sluggish ugh!! I was just talking about acupuncture qith my brother for pain management but i nvr thought of using it in this case... good luck with that.. my primary doc has always told me to become a vegetarian and it would solve all my problems lol .. haha i didn't listen to well .. thank you , #staystrong

evreca profile image
evreca

Hi Rich,

You appear to have a high risk and possibly aggressive prostate cancer, coming at a very young age (median age for detection is 66) - need to get consultation from specialized prostate cancer oncologists (not just any urologist and oncologist) for the most recent types of treatment. The current thinking is for aggressive treatment with simultaneous medication rather than serially ("let's see if it works) because the earlier you minimize prostate cancer progression, the better chance you will have. Also, if you can afford the time and expense, suggest you attend the 2.5 day Prostate Cancer Research Institute's annual conference, held in L.A. the first week of every year - there are about 800-900 attendees, almost all patients or survivors anxious to learn more about the recent developments that may help them personally (registration minimal, about $50 and hotel at Marriott LAX, at about $120/night). The more you know, the better you are in asking the right questions and potentially getting the right treatment.

Teambaratta profile image
Teambaratta in reply to evreca

Thank you evreca for the info . The conference is a great idea ill look it up . I have a few more appts with USC to talk with a medical oncologists, radiologist and again with my surgeon.. yes its been a hassle of trying to find and figure out who is the right person or team to lead me thru this madness.. but today i have faith that i have the right team and im headed in the right direction.. thank you

aztbud profile image
aztbud

Great picture! I can't help with any advice as I have not gone thru what you are/have done. I am still in active surveillance.

Teambaratta profile image
Teambaratta in reply to aztbud

Thank you buddy and i hope you can stay that way and your psa drops all else becomes bttr for you.. stay strong

Neathuh1 profile image
Neathuh1

Hi Rich. Welcome to the group.

Just this morning I said to my wife that if I had it all to do over again I'm not at all certain I'd opt for the salvage radiation I underwent following my prostatectomy. I'm about 5 years out from that now and my PSA is slowly rising. Because of it I'm told I can't be a candidate for surgery if newer imaging techniques located my metastasis. Possibly...and this is hard to say with certainty...I would have been better off just to stick with the ADT after the prostatectomy. Having said that, I found it terribly uncomfortable. I'm not sure which devil I'd choose. Just make sure you know all the possible side effects from whatever treatment you choose. Like most of us on these sites you're going to do just fine and will end up treating this as a chronic disease. God bless!

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