Very pleased with outcome
Posted , 10 users are following.
I had my first annual review yesterday after deciding on EBRT plus hormone therapy for a 4+4 diagnosis. I must say that the side effects have been minimal - very few problems with incontinence and some ED that is resolved with Viagra - which is not always needed. My PSA has come down in the first year since treatment from 2.5 to 0.4 (it was nudging 10 prior to treatment). I am 58 years old and have not missed a day's work although going to the hospital 5 days a week for 7 weeks was a bit of a chore. Apart from 6 monthly PSA tests I have mentally put it all behind me and would heartily recommend the path I have taken. Good luck to all
0 likes, 37 replies
ayman78787 david41094
Posted
Hello David,
Very happy for you. EBRT is radiation treatment?
I have had a nerve sparing radical prostatectomy 2 months ago. PSA was 4.6 and (4+3). No problem of incontinence, haven't tried sex yet.
Doctor will check my PSA in 6 weeks from now, esp that mine was marginal not encapsulated inside the prostate, so if some prostate cells were left, this would show PSA>0 and could require radiation, and I am so scared of just the thought.
david41094 ayman78787
Posted
Yes, EBRT is External Beam Radiation Therapy and there are many different types out there. I wish you well for your check and your figures give you reason for optimism.
?Do not be scared of RT. I do hope you do not need it but, if you do have any 'escapees' then RT is nothing to fear.
I wish you all the best.
barney34567 ayman78787
Posted
if the PSA rises then you may need radiation, but insist on a PSMA PET scan before any radiation is performs.
ayman78787 david41094
Posted
I wish I had opted for it instead of RP, but my doctor didn't put the option for me.
Maybe I should have educated myself more, but time is never on your side and the scare was too high... too late now.
Thanks again David. Very reassuring and comforting.
barney34567 ayman78787
Posted
Ayman if your PSA in 6 weeks after RARP is greater than zero, as is my situation, you may be prescribed radiation.
I had SBRT in three sessions. No side effects, no pain. No anything. No improvement in PSA. Was recommended hormone therapy. I am not rushing into it.
If radiation fails for you, don't rush into hormone therapy.
ayman78787 david41094
Posted
Will send you a pm.
Roger2Dodger david41094
Posted
I am 7 weeks past EBRT, I had no hormone therapy. My PSA at 6 weeks was 2.07, almost same as yours at 2.5. My side effects were tolerable, although fatigue was bothersome when I did physical activity.
At 7 weeks I am just about free of side effects. I am looking forward to annual check up and hoping for a PSA as good as yours.
At diagnosis my Gleason was 4+3.. PSA 6.86.
I like your positive attitude, mine was not as good during treatment. As I begin to heal my attitude is healing also. I was on AS for a year before treatment, and now that I have the treatments, side effects behind me, I am glad I chose treatment.
Roger
david41094 Roger2Dodger
Posted
Me too. I agonised for well over two years whether or not to have treatment but my PSA was only heading in one direction. I am posting this to show others that there are very few side effects to EBRT (apart from those I've mentioned and the initial fatigue) and I feel I have made the right choice. No regrets.
charles61038 Roger2Dodger
Posted
Roger2Dodger charles61038
Posted
Great to hear from you! Yes, during treatment I was thinking I should have continued AS. But, now it is over and getting my life back I am looking in the rear view mirror.
Charles, I am grateful for all the support you gave me. I am most appreciative!
Roger
romneyj david41094
Posted
richard98806 romneyj
Posted
romneyj richard98806
Posted
Richard, i'm 4 months post RP and was 3/4 Gleason and 5.6 PSA - Continent by 5 weeks post op but occasional small leaks. I lost my lefthand neurovascular bundles and erections with the help of viagra are just good enough for penetration for at most 10 minutes... as you say patience is needed!!
david41094 romneyj
Posted
The purpose of my post was to reassure those who choose RT - I am genuinely surprised at how mild the side effects have been.
I will post after another year but the first year has been relatively problem free.
Good luck to all
ayman78787 romneyj
Posted
Hello Romney,
Thanks for sharing. This is very re-assuring, as my conditions are very similar to yours - gleason 4+3, PSA 4.6 and now 2 months post nerve sparing RP.
Just like you, perfectly continent except for the occasional drop.
Haven't tried sex yet, have been prescribed Vivanza (Viagra like but long acting 10 hrs and lesser side effects O was told). Doctor said in the case of sex, the earlier I start, the better chances of recovery I have. He also said he cannot guarrantee that I would ever be able to have sex without a pill (maybe yes maybe no). However, and forgive me for asking this, my greatest concern is leaking urine during intercourse.. this is what's keeping me from even thinking of sex. What has been your experience?
Thanks, Ayman
david41094 ayman78787
Posted
ayman78787 david41094
Posted
Yes, time is the great healer indeed.
I admit that farting is also tricky for me... big chances of leaking... can't seem to quite be able control it yet.
Cheers
romneyj david41094
Posted
I look forward to your yr 2 report!
romneyj ayman78787
Posted
Occasionally I squirt urine like an ejaculation it's a small amount and my wife has no problems with it. You could always wear a condom.
PS if I pee immediately before there is no squirting at all, and mostly even if I don't pee first, I don't squirt!
Roger2Dodger david41094
Posted
A question on Flomax, are you taking this med for urination, or if you ever did.
I stopped tsking It for a few days, but had to go back taking it. Altough Urologist gave me a new prescription. Alfuzosin.
The Flomax was causing lower legs burning and itching. Alfuzosin has helped the burning and itching. I would like to stop this medication, but not possible now. Pee like a race horse taking it, without it, back to weak stream and dribbles.
david41094 Roger2Dodger
Posted
All the best
charles61038 Roger2Dodger
Posted
Roger, I was taking Flomax too. At one point, I had to take two a day. One in the morning, and one at night. I had to do that because at night, I had a very weak urine stream... sometimes when I would get up at night to go, I couldn't finish. I knew I needed to go more, but it wouldn't come out. I found that if I walked around the house a little bit, I could finish. So I went to the urologist about that. He said to take two Flomax a day for a whiile. I did that for maybe a month or two. Then I cut down to one a day... then one every other day for a week. Things seemed okay, so I stopped taking the Flomas all together and I've had no problem since then. So I would think eventually you'll do the same and be off the Flomax. - Charles
Roger2Dodger charles61038
Posted
Roger