Hey, Last year I had stage 4 cervical cancer. Currently NED but I’ve got a nephrostomy in my left kidney.
They are looking at maybe trying a stent.
I’ve looked at the info and the stent seems to be more troublesome, with pain, infections, bleeding. The only bonus I can see is that I wouldn’t be walking around with a bag of urine on my waist.
Anyone had or has stents in that can help me make an informed choice?
I don’t have any info on either sorry but great to hear your doing well and they are looking at other options.
I’m sure there are women on here who have experience of both and can share their experiences with you.
I am now on my last week of chemo and radiotherapy, then it’s on to the brachy so far everything has gone well and I am feeling pretty good.
Take care x
Hey! Glad everything is going well and you’re getting close to the end.
I’m still being reviewed every 3 months which brings a whole load of scanxiety with it.
Waiting on occ health signing me off to go back to work in the next few weeks.
I was in your shoes this time last year so stick in.
Stents seem to be as troublesome as the nephrostomy but no one seems to have much info on either. Xx
Great to hear you feel well enough to go back to work. I know that you love your job so you must be pleased.
Yes waiting on scans and results is awful. I am having MRI prior to brachytherapy I’m hoping that the treatment has done something but you never know what’s going on and because I’ve had little or no side effects I do wonder if it has worked.
I’ll cross that bridge when if and when I come to it no point in worrying about something that has not yet happened.
Hopefully you’ll get some responses x
My cancer pain suddenly stopped causing me extreme pain! When I had the MRI before the brachytherapy, I was reassured that the tumour had shrunk enough to allow me to get it.
I ended up with really bad burns on my bum from the treatment and it really hurt to pee for a long time afterwards, but other than that, I felt fine. Even with the menopause covid.
Currently in isolation now with my 10 year old daughter who’s tested positive for covid! Another worry.
But can’t wait to get back and get stuck into something, although the Doctor is trying different HRT’s and it’s causing me some issues.
Hopefully that’s you home for the weekend. X
Yes all done for this week. I have not really been out since treatment started partly due to covid I know so many people that have tested positive in the last month or so.
Just going out for walks going to the odd beer garden, no shops or indoor places I want to get through this treatment covid free!!
You gave me some good information earlier about your brachytherapy in Edinburgh so I know what to expect. My skin is fine at the moment no redness or irritation using the zerobase cream the nurse gave me fingers crossed it stays that way.
Hope your little girl is OK x
My wee girl is fine, she’s only complaining of sore eyeballs, I’ll have to make sure that’s added to the list of symptoms
Glad it’s going as well as it can be and glad I helped you a little bit. I went into treatment as an emergency so had no expectations but no one to talk it over with as well.
Always here if you need me. Xxx
Hey @Rachael_R - firstly, so good to hear of your NED confirmation after stage 4, you absolute warrior
I have a stent fitted in my left ureter as the cancer had started to put pressure on that side; kidney function was still fine at the time but was showing signs of decline, and knowing that chemo can have a detrimental effect on your kidney function they decided to fit a stent to try to avoid issues down the line. I must admit, the first 24 hours with it were excruciating as you often end up with some fluid pushing back up into your kidney when you urinate, and I felt like my kidney was being torn to shreds
HOWEVER, within a day it settled noticeably and four weeks on, I literally can’t feel it at all and have had no issues/infections/bleeding or anything else thus far. I am definitely pro-stent - nephrostomies seem far trickier from what I’ve read/heard.
Thanks for replying.
Yeah, stage 4 is a bit of a bitch.
I couldn’t get chemo because the cancer spread into my bladder and put me into kidney failure.
I got one nephrostomy removed but the left is still in situ.
I had a nephrostogram done in December 2020 and my ureter is 3/4 blocked, they can’t be sure if it was the cancer, the treatment or scar tissue.
I had another nephrostogram last week and there’s been a big improvement and they are considering a stent but it will be permanent.
Thanks for replying, it’s reassuring to hear you have had a positive experience with the stent.
Hope all is well with you. X
Hey, thanks for replying.
Yeah, I’m similar to you, cancer damaged my uteter, plus the radiotherapy and brachytherapy just damaged them a bit more.
I ended up in hospital last December with sepsis caused by the nephrostomy.
Basically they told me then that my body will always reject anything foreign in the body.
Similar to yourself, I was told the same thing.
I have been blighted with infections and when one is treated another 2 take up residence.
They’ve now decided to let me go without antibiotics and see what happens, so far, so good.
I didn’t really have any issues with the nephrostomy, I had a change in March and it blocked once or twice a week which was agony, but this appeared to be an issue with that nephrostomy.
The main issue is my nephrostomy bags can leak quite often, I’ve been standing in the post office queue and the next thing my back is soaking with urine. Cancer and the after effects take all your dignity.
I’m in such a dilemma, I can’t face a lifetime of pain and being uncomfortable as well as the worry of scans every 3 months.
I’m leaning towards trying them with the option of going back to the nephrostomy if I have issues, not even sure if they can do that.
Maybe it’s worth mentioning that to your consultant? They may have more options available too. I was told recently that there is an option of replacing the ureters on the table - but more options to go through until we get to that stage (thank the Lord!).
I’m on a prophylactic tablet called ‘hipprex’ that worked wonderfully in suppressing the infections for a while, im just unfortunate that they didn’t work long term for me - might be another option should you need them?
I hope you come to a decision with your medical team soon and it works for you xxx
I was stage 4 like you and currently NED. I have had nephrostomy both sides since last Sept. I have had stents fitted last week 25th Aug both sides. I was desperate to have my bags removed. So I could wear drsses etc. So far I’ve had to get stronger pain killers ie naproxen and lansoprazole. Hot water bottles also help. I try to drink loads but hold back later in the evening as I can be up several times in the night. Personally I was sick of the long bags during the night, the accidents when I unplugged myself, and having to wear baggy trousers permanently. Let alone my skin was itchy and sore. My dressings come off Thursday hopefully then I can actually have a bath. Im hoping the pain dies down soon. Some web sites say it improves after 2-3 weeks. The Hopsital have said that they will be replaced every six montths that probably will be under general annestectic. I do not regret having them removed as to say they were controlling my life was an understatement. Please feel free to ask any questions.
I had extremely leaky nephrostomys both sides. No-one told me but your Local Stoma Nurses can help. I would leak permanently ie 10 times a day. I thought that was what they did even a kidney consultant said to me well thats what they do. However. I had a Hospital appointment they were horrified rang the Stoma Nurses they changed the type of bags used to what they called Plan B, I also started using extra seals ie donunts and bananas if you know what I mean. After that I hardly ever leaked. I still got them blocked expecially near the time they were due to get exchanged. I have just had stents fitted last week. On strong pain killers now but hoping the pain dies down.
Yeah, I’m fortunate to have had the right one removed in December but the left is still in situ.
My nurse uses a colostomy bag on mine now, so I don’t have the long bag during the day. I can wear my jeans and leggings and a longer top covers it, except when it fills and I look like I’ve got a huge lump on my hip.
My skin isn’t great because it’s stuck to my skin and then tegaderm is put all around it to stop it popping away from my skin and leaking.
I’m hoping the stents work for you, and they are a game changer.
I really want a bath and maybe, covid dependent, go away on holiday, I don’t feel I could do that with the nephrostomy.
Plus, I’m a police officer and can’t get body armour whilst I’ve got the nephrostomy.
Such a dilemma and one I didn’t think I’d have. As it is at the moment, I don’t have any pain from the nephrostomy, that’s said I’m still on fentanyl patches and pregablin but most of my pain relief has been stopped.
Thanks for replying, just feel that there isn’t many of of us Stage 4’s with this.
NED though! Go us. Xxx
A quick update.
I was due a stent exchange beginning of December but according to my pre-op bloods my stents were not working. I was told to get to hospital asap as my kidney function was 22%. After changing my stents anyway and much deliberation and scans they re-put nephrostomy bags back on. They showed me that my left kidnay was infected…not that I knew or felt anything. Needless to say I was distraught. Since them within a week I started to pee naturally which confused me as I was told that if I peed naturally that would mean stents not bags… Also 10m days later at a bag change my nurse noticed I was really infected and had to have anti-biotics. Most of last week my left bag was dry and I was peeing as normal. I have phoned my stoma nurse and spoke to my oncologist and told them. They are supposed to be passing the message on to my urologist. However to confuse the issue I have now started filling my left bag again although I am still peeing normally. So watch this space I personally perfer stents over bags every time. I am hoping to get a appointment with the urologists soon as my original appointment is not due to end of Feb. As I think it wil be interesting to see what they suggest this time!