This is my first post to the forum but I have accessed the site on most days for the past few months and I have been impressed with the empathy , honesty shown and the advice provided by the community. My stage 3C OC journey echoes that of many of the group. I was diagnosed in November 2018 with a 19 cm tumour with no symptoms experienced until about 8 weeks before but dismissed as approaching old age or IBS. At first my condition was deemed inoperable but my wonderful oncology team fought hard on my behalf, a laparoscopy was performed and it was then considered possible to operate. I don’t think that I would have believed that I could be so delighted to hear that I could now have a major op! Debulking came and went successfully followed by 18 weeks of chemo, 15months in remission another round of chemo....carboplatin and caelyx…I found this much harder than the first time. From January 2021 things seem be on an even keel but the next two scans showed signs of osteoporosis probably not caused by, but possibly exacerbated by the chemo and a small blockage in my left kidney. I am now being advised to have not just one stent but two - one in each kidney. I have had no pain but my oncologist took time to show me the past three scans where it was obvious that the effects of the blockage were increasing so I need to have them inserted before it becomes an emergency situation. Has any one had stents inserted long term? If so, do you have any advice re side effects or strategies to minimise any discomfort?
Honor x
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Bluemoon3
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Hello Honor. My bladder was damaged in my debulking op and a stent was inserted. I did not get on well with it. I was referred to urology who explained that when a stent is put it during an op by an oncology surgeon it is a one size fits all. I had mine removed and a more suitable one put in - made to measure!
My kidney became blocked and they replaced it with an “in out” stent which involved a urine bag. I had this for several months and then it was removed. I’ve had 11 blissful months with no problems. At my last scan they said my kidney was a bit sluggish and I am getting some flank pain so 🤞🏻🤞🏻🤞🏻🤞🏻it’s is still functioning well. I have nuclear scan on 24th so we’ll soon know.
Good luck with your stents do you know if they are “in outs”? You may not have to have them permanently. X
Hello JustKBO Many thanks for your response. I haven’t been given any details so far - just that I need to have them and that they will need to be replaced within 6 to 12 months. Certainly, in outs have not been mentioned. I am feeling good at the moment but I am apprehensive that the stents will upset the balance of my body again. Hey Ho …no doubt I will get used to them but I am not really sure what to expect at the moment. Good luck with your scan. I hope that your kidney continues to function well
Many thanks Sheila for your sympathetic response. That is what makes this group so lovely 🥰 . As we all know it is a lonely pathway that we are on with our cancer but being aware that there are so many Teal ladies sharing our journey somehow makes it more bearable. It is great when we can receive practical advice about our queries but the ‘stroking’ and emotional response is equally important. Love Honorx
Hi Blluemoon3 I have bi-lateral stents fitted. I have had them now for bout 2 yrs. first one stent then requiring two. To tell you the truth I don't have much problems with them - I did have a big bleed into the toilet pan and ended up at hospital and admitted overnight until the Urulocy Consultant saw me. He said he thought the bleed was due to a stent becoming dislodged. Even at this point it had settled down and had no further problem. When I have urine tests they're always telling me there's blood in my urine but it is only tiny amounts and medics aren't worried. When bending over in a certain position eg. over the basin when having a wash sometimes I get a really uncomfortable ache in my back and makes me feel sicky - I change my position and wait for the ache to subside. I seem to have my stents changed about every 8 months. I always send copies of my CT scan and bloods to the Consultant Urologist every 2/3 months as it gives him info as to what's happening re. the cancer and how it is or may affect my ureters and stents etc. Hope this info useful. Best wishes and good luck. Gwen x
Hi GwenThat is really helpful information, especially coming from someone who has actually had them inserted. Your experience is reassuring - even though I am aware that everyone can have different reactions. Many thanks for taking the time to respond to my query. I have tried to research kidney stents but there doesn’t seem to be a lot of advice out there. Many of the sites take me to heart stents. I guess that the frequency of this type of stent is greater than those for kidneys. It sounds as though your stents are under control so hopefully my experience will be equally smooth. I will remain positive that this will be the case! Good luck with your own journey Honor x
Hello there. I’ve had a reoccurrence after nearly 8 years. It was a shock as I didn’t have any symptoms. I had an operation in January which was complicated by adhesions. I had two stents. About a week after the op I had to have two nephrostomy . Nephrostomys was taken out after three weeks. The stents stayed in for six months. During that time I had numerous uti. I have recently had a kidney infection which see me in hospital. I had neprostomy inserted right kidney then after a week a stent up in and neprostomy taken out. I have been told this will need replacing every 4/6 months. Side effects for me was the UTIs and uncomfortable underneath. The first three months were fine and so far(touch wood) this recent stent is ok. Hope this helps a bit.
Many thanks for your post Char5. You have had quite a journey. Your emotional state must have felt like the first diagnosis after 8 lovely years in remission. I had been told that there would be an increased risk of UTI’s. This info made me reluctant to agree to having the stents at first but after a discussion with my very patient oncologist I realised why I needed them , despite having no symptoms. The most important factor to take into consideration was that if I had to have an emergency op my future options for cancer treatment would be limited. I am on the waiting list - supposedly for 2 months but…inevitably with Covid cases rising 4…..it is now 4 months since I was told that I needed them. Hopefully, I won’t have to wait for much longer as I just want to get on with it now and preferably after Christmas! Meanwhile, as I suspect we all do, I count my Blessings and thank God for the wonderful researchers and medics out there who work so hard to give us hope for the future….even though some days are better than others! Take care of yourself. Honorx
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