It is interesting times here. I'm still recovering from surgery to put in a chemo port and a ureter stent, and starting chemo for NEPC tomorrow morning. Very eager to be going on the offensive.
Question for the forum: Does anybody else here have any experience with a "Double J stent"? Mine is working to unblock my kidney okay, but it's made my painful urination even worse and is generally causing a lot of irritation and pain (although at much lower levels than a blocked kidney). Does the body get used to the stent with time? Will shrinking my bladder tumor make things better? Or do I just need to get to a point where I don't need the stent anymore? At the risk of sounding odd, this stent has really taken the joy out of being a cancer patient
I have 2 stents and they occasionally can be painful but it gets better with time. I’ve had them for 22 months. Regarding how long it all depends. I was told that maybe they may come out but I was not so lucky. Also I was told taking them out only to put them back in later can cause kidney damage. So it all depends on how you respond to treatments. Also be aware the tubes have to be replaced every 3 to 6 months so the pain starts all over. Mine are replaced in an OR as an outpatient under general anesthesia via cystoscopy.
I was told by the MO that once they put them in urology does not want to take them out if there is a chance of putting them back in again. It’s hard on the kidneys.
But if they have to be changed periodically, why not take out the old and wait and see before putting in the new? Of course, that would mean two procedures instead of one, we're not doctors, etc. etc.
Thank you so much for your reply! I've been hesitant to run when it leads to blood in urine, but wow, you just ran through it all. These are the things that reset my expectations of what can be done with cancer. Proof of existence that a marathon can be run with stents! You are one tough hombre brother!
Re- read your link. Regarding your quote " I want to make ripples that extend out and affect people that I may never meet.", you've inspired me, and I've in turn inspired others (which surprises me every time) that means you have positively affected people you've never met including Donnie, a stage 4 ovarian cancer survivor who was walking laps in the hospital not long ago and inspiring other patients.
Did they give you any medication for stent discomfort? I got prescriptions for Tamsulosin for stent discomfort, and for Pyridium for painful urination. (You can get pyridium without a prescription) I only took them for a week or so as the discomforts eased up pretty quickly.
I got my stent via the route you were expecting. I don't know if that made it easier, though.
You'll love the port. Did they give you a prescription for EMLA cream? That stuff works great.
Thanks for the suggestions. All I have is low dose oxycontin. I can ask for tamsulosin. I do have some pyridium leftover from my bladder procedure, it didn't do too much for me but did stain the toilet seat. I should give it a try tomorrow, maybe it will help now, and I'll be staining the oncologist's toilet.
No EMLA cream either. I'm beginning to think my MO's weakness is pain management.
I just got tolterodine to help. It's an anti spasmodic, should help with the urgency and the crampy endings.
I am loving the port. They freeze spray the skin and any pain only lasts a couple seconds. Today it was a little tender, being the third day of infusions in a row and the area around the port is still inflamed. Should be even better next cycle.
Hi Tom, I had my Antegrade double J stent put in my left ureter last Wednesday and while the procedure was bearable under light sedation, the pain afterwards was pretty bad. They gave me some IV pain killers until the panadenine forte kicked in and then they sent me home.
The pain slowly subsided that afternoon/evening and after a few days the bruising and flank pain also disapated. What I am now experiencing is some discomfort when I empty my bladder. It seems that the coil moves down as the fluid drains out, and comes to rest on the inside/bottom of my bladder. Also, this seems to pull the tube down a wee bit which tugs the other end of the stent, the coil inside my kidney, giving me a bit more discomfort. It doesn't hurt every time but enough times, at least once a day, to make me want it gone. But I have two kidneys on-line now, and I feel much brighter. Especially as my 2nd Chemo session is next week.
So, like you, will I need it long term? I hope my treatment will shrink my bladder tumor enough so I can have the stent removed. Then I suspect, read hope, it will be a case of monitoring the tumor to ensure it keeps away from the uterer openings in my bladder.
Well Tom, I hope your stent pain goes away, as it seems that your missing out on the fun of the PC party, he he, cheers DD 😎
Sounds similar to me. I have discomfort urinating when on oxycontin, and agony otherwise.
I do have a skewed view of life with cancer. My response to treatment made my PSA undetectable as my symptoms slowly faded, and my friends cheered as I "beat cancer". It was a party of sorts. Hoping for a repeat performance this time, despite the odds.
Back in 2012 and 2013 I had kidney stents in due to a PCa tumor in my bladder blocking urine flow. I had one in my left side for about 2.5 months and a sequence of 3 in my right side for a bit over 8 months.
I found them irritating - feelings of being internally poked and scratched, occasionally a bit of blood in my urine, especially if I was too active physically, and, some discomfort when urinating.
I mentioned these issues to my urologist and each of the two times he removed the one on the right side and replaced it by a new one, he used a slightly smaller one. This definitely helped with the internal poking and scratching and reduced the amount and frequency of blood in my urine.
Overall I think I tolerated them fairly well, but I was quite happy when the last one was removed (after the tumor shrunk due to ADT and external beam radiation). Best of luck to you!
First time they often use hard version of stent to assure that they can place it also in the case of narrow ureter ( mostly caused by high pressure outside of it). In the case you need replacement after 3 months you can ask for soft variant.
I brought the CD-ROM of my brain scan to his office today so he could make a copy of the source material. I told him the CD was "my head on a platter". Perhaps now he can find the detective area of my brain that makes these puns
Dearest Tomas ! The goal is to get you off of the stents . Treatments should shrink everything down . That sucks that your pain is worsened . Tell the dr. Be glad no tubes out of your back. You can get better from this like I did. I do understand the psychology of it . Takes any wind from the sails . Hang in there it should get better .
I'm very happy not to have tubes, and have been inspired by your story of endurance and eventual victory.
MO has prescribed an opioid and an anti-spasmodic, and they help. Pain also dropped noticeably with the start of chemo, so quite under control at the moment. Most importantly I'm now comfortable enough to rest on the couch and can still do some physical activity.
Really bummed to be on chemo again. I expect it will work and the stent will go, but the nature of chemo seems to be "things get worse before they get better". Frustrating! Thanks for letting me vent.
Oh I just sent you a message but I see here why you had it done. I’m sure it’s like anything your body needs to get use to it but make sure your dr’s know. Read all you can on taking chemo , the guys in here always have loads of tips.
Tom, I just had my ureter stent replaced during a Cystoscopy. The chemo had some success in shrinking the tumours in my bladder but not enough, so I'm considering more chemo shots. Hope you are hanging in there, regards DD 😎.
Thanks for the update! Sorry to hear you still have a stent, but can say from experience it beats the pain of a blocked kidney.
To say I'm anxiously awaiting my stent procedure and a subsequent scan would be an understatement. Happily, clonazepam is doing a sufficient job slowing my brain down that I can rest and recover from the chemo.
Hi Tom, I agree, having a ureter stent is not pleasant but better than the alternatives. I hope you start to feel better soon as the Chemo leaves your body. I haven't had Chemo for a month now and it feels good to have my taste back. You will feel better soon, hang in there brother 😎 DD.
My last cycle was delayed a week to allow extra time to recover. I started to feel significantly better literally on the last day before infusions started again. It both gave me hope, and was the worst possible tease I could imagine. Oh well, off to get my nose swabbed for Covid before the stent procedure. I'm going to drive myself, which is something to celebrate.
Hi DD, sorry for the late reply, I haven't been keeping on top of the forum like I used to. The procedure went okay, however the urologist didn't even attempt to check ureter function, he just stuck in a new stent. He's erring on the side of caution and saying he wants me to have full kidney function while I'm still getting treatment.
It's been a rough week, anesthesia on top of recent chemo with a side of fresh stent pain has made me completely useless.
Hi Tom, I feel your pain brother. My new stent is taking its time to soften and become bearable. My Urologist erred on the side of caution too and replaced my stent as there are still tumour mastisis around the ureter. I had a PSMA PET scan yesterday and hope to put that report and the bladder biopsy pathology from the cyscotopy on the table on Friday with the Oncologist. Then determine what we're up against and decide what to do in order to clear the bladder mass and get this stent out. Good health brother 😎DD.
Well it's good to know we literally feel each other's pain, LOL! Actually, I'm not sure how much of the pain is from the new stent, versus the trauma of removing the older stent. I'm under the impression that simply having a stent removed is no picnic. Tomorrow is my CT scan, and scanxiety is in full force.
Hey Tom, my fingers are crossed 🤞for a good outcome for your next CT scan results. My stent was replaced under a general so I didn't feel anything, but my willy is still sore from the removal of the cathader tube. The nurse didn't full deflate the the bulb, arrrggggg!! Next time I'll check they fully deflate it (extract 10mm of fluid) before they pull it out. All the best brother 😎DD.
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