New member, Gleason 9 post-op, node positive, on ADT with RT to follow, wants advice

I'm a new contributor. Reading posts helps me see when my symptoms are not unique. I'm 2 months into Lupron and Casodex. Feel well most of the time. Hot flashes, and strange feeling with occasional loss of balance. Love golf. Last score 51/41 makes my partners shake their heads as I have not disclosed my issue. Humbling for sure.

I have shoulder pain that keeps me awake at night getting worse. Stopped taking calcium and Vitimin D pills for a week, (too big to swallow even when divididing them) may be the problem. Back on them today.

Heading back to my northern home for Christmas and radiation for 10 weeks. Always waiting for the next shoe to drop but staying positive. Would like to know if sex is gone forever? Would like to know if radiation will cause me additional pain? Would like to know if radiation causes weight loss? Or Gain?

61 years old. Radical prostechtomy with robotics because Gleason showed 4+3 in 4 of 12 samples. After surgery biopsies showed 3 lymph nodes affected and Gleason 4+5, PSA 1.87. Appears regional at this time.

Gave your thread a title. -- PeterDisAbelard (moderator)

Post Edited By Moderator (PeterDisAbelard.) : 12/19/2016 1:33:30 PM (GMT-7)

Naples -

Welcome to the club nobody wants the need to join.

FYI - To receive a better response you should put a title on your posts.

Looks like we have some similarities of the disease, LN's positive and persistent PSA.

I will hve my last sRt treatment today for me 70 Gy to the bed and 52 Gy to the Nodes with 62 Gy to nodes identified by the 68 Ga PSMA scan.

I was putting on weight with the Lupron, but went on a diet and lost the weight back. RT did not seem to make a difference and I had no pain with the radiation. I did have bowel changes as a result of the radiation, diarrhea a few times and bowel movements 3 -4 times a day, instead on my normal one time.

Have been told bowel issues will correct over time.

Bobby Mac

Good luck with your Journey!

Naples,

Welcome to the forum. Glad you found us but sorry you needed to be here.

For most guys the side effects of radiation are fairly mild. The treatments themselves don't feel like anything -- you just lay there for a while and then you get up and go home. Odd bowel habits are fairly common -- loose bowels and an occasional bit of goo when you fart -- and hemorrhoids flareups are not unusual. Almost everyone complains of fatigue near the end of treatment and it lasts several weeks after the treatment ends. Expect to take a few extra naps from time to time.

Sex will probably continue to be a struggle. I dunno how much erectile function you have recovered after surgery but the radiation won't help with that, although it isn't catastrophic. What is catastrophic -- or nearly so -- is the hormone therapy that pretty much shuts most guys down completely. If you hope to recover as much sexual function as possible it is important to find ways to get occasional erections (a couple of times a week) to keen the tissues from atrophying. Pills rarely work for guys on hormones but pumps and injections do work.

Most guys find that the hormones make them gain weight and keep it on.

Good luck with your radiation. Keep us posted on your progress.

Hi Naples,
The aches and pains are almost certainly from the lupron, at least this was the case for me. The cutoff of testosterone means a loss of muscle mass, so all the spots in the body that are being helped by decent muscle support are now going to lose some of that support. My traditional sore back is at a worse level now, and that's even with increased stretching on my part; even though I've been off lupron for five months I suspect my testosterone level has stayed very low. All the classic recommendations for improving general physical condition are in play -- healthy eating to minimize or lose weight, increasing flexibility and physical endurance, strengthening core, etc. For a round of golf, increased recovery time, sorer joints, and loss of yardage are unfortunately likely side effects of lupron.
Best wishes,
Jim