I got it out today, and man, you aren’t kidding! What a relief to not have something tugging every time I move.
I took boxers to the hospital in my “go home” bag, with the thought that I wanted things loose and free down there. It took me a couple days to realize that freedom is not your friend when you have a catheter. Get nice tight underwear that holds everything in place, and you’ll be much happier.
It seems so obvious in retrospect. I blame the drugs.
Congrats on the catheter removal. I remember it well and it was quite unpleasant, though quickly over. I hope you’re doing well overall!
And, yes, anything that disturbed the peter was just not a good thing. That was a tough week for me, carrying around that bag, fearing I’d bump into a door or something stupid. Youch.
So, I should resign myself to being a couch potato until the catheter is out? I was hoping that a short walk, bag and all, might be in the cards after a couple of days. Just sitting around for six or seven days might drive me nuts.
I had my last radiation treatment today.
When I had my first treatment, the background music was “Dust in the wind” followed by “Don’t fear the reaper”. Today, for the last one, the music was “Turn, turn, turn”.
I had requested they play classic rock for my treatments.
I just stayed home the whole time, and yes, it drove me nuts. I couldn’t see walking around in public with that bag and with a hose sticking out of pants that was clearly full of pee. Yes, there are more portable options, a small bag you can strap to your leg or something, but after the procedure I just didn’t want to get elaborate with my pee arrangements. Just bathing was an adventure.
Congratulations! Let us know how it goes from here.
Congrats! The ending music sounds slightly more cheerful than that for your first treatments.
No, you can certainly get out if you’re motivated. They wanted me walking 50+ feet by the second day to avoid blood clots. I walked around the block on day 4 and went out for coffee on day 5 (walking 1/2 mile).
I had more trouble around the house - sleeping, showering, getting “dressed”. Once you have things held down tightly, walking slowly is OK.
You’ll probably get a free-hanging bag for around the house, and one that straps to your leg for going out. With the hanging bag, you have to carry it when you move and hang it somewhere when you’re sitting or lying down. You either can’t wear pants, or you can cut a hole in some old sweats and feed the tube through. If you stand up and forget to carry the bag, you will swiftly regret it.
The leg bag is easier to deal with, but it’s smaller and the bag must be lower than your bladder. So you have to empty it more often, and you can’t lie down or put your legs up with it. That said, it wasn’t too hard to swap them out, and it was worth it to get out of the house a couple times.
Radiation’s done, but the side effects, mainly polyuria and bladder spasm continue, though definitely reduced by tamsulosin twice a day. The literature suggests the side effects will generally resolve within 2 to 12 months. Whee! (Weeeeeeeee?) But even thinking of a bathroom or hearing running water (and I live on the shore of a great lake) can trigger a spasm. Hot damn!!
I did get the results of the DECIPHER test, a genomic study of my tumor sample, and it is relatively good news, as it indicates that overall I’m at intermediate risk. My score is 0.48. Low risk would be 0 to 0.45. High would be 0.6 to 1. When combined with radiation therapy, this score predicts a 3.3% chance of cancer spread in the next 5 years, and a 6.5% chance in the next 10 years, with a 12.5% chance of dying of prostate cancer in the next 15 years. Since hormonal therapy is also added in to my regimen, the odds are even lower than that.
That doesn’t change the fact that my Gleason score alone (4+5) put me at high risk for progression, so ‘watchful waiting’ was never a good option.
But the info does give me food for thought when it comes to deciding how long to stay on hormone blockers. 18 months is standard, with a recent push to consider 24 months of it as it may give slightly better odds. I plan to stay on at least 12 months, probably 18 but may decide to end it there.
Frankly, I’m more likely to die from my other co-morbidities before I am from prostate cancer, so now quality of life considerations will play a larger role in decisions down the road.
All in all, I’m pleased with the news and my present status.
All the best to all my prostate pals here!
And ex-prostate pals!
Congrats on the good news. We’d all prefer 0% chance, but your risk assessment is right on. Hope the side effects diminish quickly and the hormone effects are mild.
That sounds pretty good to me! I know the side effects from the hormone blockers suck, but it’s good that the end is in sight. Congratulations- and I’ll keep a good thought!
@Qadgop_the_Mercotan congrats on completing your treatment course. Love love the dabbing unicorn graphic! I hope the side effects dwindle soonish and you stay well.
I had a radical prostatectomy in 2018, and never got the whole “let’s check the genome” exam – is this unusual or just a new thing? I was Gleason 7, so maybe I didn’t rate the luxury treatment. 
Sorry you have to do the hormone thing, I understand it’s not pleasant, and I may be up for that once my PSA reaches .2 and they decide to refer me to oncology.
And all the best to the non-prostate people here on the Dope! Looks like Qadgop’s news is relatively good for now.
@squeegee Here’s some lowdown on the DECIPHER score.
I was high risk based on Gleason score alone, so there was really no question in my mind about either RT (rad therapy) or RP (radical prostatectomy) Rx. I wanted the info for decisions after my radiation was done, and the DECIPHER score may help there.
I would have gotten the DECIPHER score before any treatment if I’d had a Gleason 3+4 lesion, and that would have helped me decide on whether to go with watchful waiting or interventional treatment. With the newest data on prostate cancer coming in suggesting that watchful waiting is preferable for many if one is low to medium risk for cancer progression, I expect to see the test used more often.
In my case, the test wasn’t even offered until I brought it up and I only did so after getting “curbside consults” from a number of cancer specialists who were also friends of mine. I discussed it with 5 different physician experts before deciding the info might be useful to me. Actually making decisions based on the data the test provides can be challenging
Thanks for the detailed reply, and the interesting article. I wish they’d gone into more detail about active surveillance - what they monitor and how they decide if they’ve surveilled enough and it’s time to act. I’d guess my 14 PSA and 3+4 Gleason would have put me right on the edge of the “maybe we can wait” group, but I don’t know what genomic test would have found (since I no longer have a prostate). If I could have safe(ish)ly waited, I would have.
Based on the info you shared in your last post you would have been at least an AJCC stage IIB, based just on Gleason score and PSA level. Not terrible, not great. Since you and your treatment team decided to go with radical prostatectomy treatment, DECIPHER wouldn’t really matter all that much for future decisions. Had anyone been on the fence about go/no go with surgery or radiation, then it might have helped decide one way or another. I don’t know your other factors involved in making the decision (age, tumor size, palpability, other co-morbid conditions) but I’d not disagree with anyone’s desire for proceeding with treatment given your PSA and Gleason score.
I am IIIC, so the DECIPHER score didn’t play into my decision about whether to pursue treatment now or not. It’ll come into play for me later, when I decide on length of treatment.
Usually following the PSA every 3 to 6 months serves as basic surveillance for ‘watchful waiting’. But again depending on the clinical situation, repeat biopsies and/or repeat MRI or even prostate Ultrasound in 6 to 12 months might also be the surveillance plan. Again, individual mileage varies greatly.
If it helps, I was 55 at diagnosis. Prostate was not enlarged (my urologist called it “tiny”) and undetectable by touch. I was 5’6", 155 pounds*, only co-morbid was high blood pressure. They found an extracapsular extension when excised, no other spread to lymph nodes etc.
*now I’m 170 at 60 and need to get after that
I think I was 2C post surgery because of the extracapsular, but I can’t seem to dig up my post surgery pathology report that had staging. I need to call the surgeon’s office and get that record.
I still wonder if my PSA 14 would have gone to 20 or more if I’d not had surgery. It started in the 9’s and gradually grew over four years into the teens. Then again it was all over the place sometimes: 11 then 9 then 12.
PSA values can be very erratic; they’ve never been an ideal marker for anything like precise prediction of disease status or progression. Frankly it’s most precise after prostate cancer treatment, to see if it stays low/undetectable.
Latest PSA today April 13 2023 is .06. Last 3mo was .07, previous 3mo was .06
Apparently I’m in a circling pattern for a few years.
Since it’s so steady, I wonder if my cancer can be considered less aggressive?
Well I got the radical prostatectomy yesterday. I can’t say that it has been pleasant, so far. I came home the same day.in a moderate amount of pain. My left shoulder is sore which is apparently common and my core is pretty sore as well. Tylenol is the only painkiller I’ve taken The script for Tylenol with codeine got screwed up but I should get it today. I’m not sure if I’ll take it. I’m using the spirometer and man, its hard. I can barely get the thin to go up to 500. Prior to surgery it was no problem to get it to 3500. I’m walking around the house and will try going outside tomorrow. No appetite but forced some yogurt down.
I just had my 6 week post-op PSA test, and it was undetectable. @squeegee, hope yours stays low. The doctors told me the absolute number wasn’t as important as the trend.
@MikeF, glad it’s going well so far. The first few days suck. If you’re already walking around the house, you’re doing great. I’m sure they warned you, but the pain is usually worse on day 2 and 3 as the anesthetic wears off and you’re moving around. And you’re right, that spirometer is evil now, but your diaphragm comes back quickly.