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Encrusted Stent, Low Grade tumour Uterer & Kidney
My Sister was diagnosed in 2020 with High Grade Urothelial with Lamina Propria Invasion and CIS stage pT1 which was removed in Sept 2020, follow up cystoscopies were NED till December 2023 when a Low grade Non-Invasive Papillary Urothelial Carcinoma grade 1-2 TCC pTa was removed. A stent was inserted in the uterer then, and she has just had her appointment to have the stent removed ( 18/3/24) and the Dr said that the stent was encrusted and that there were now tumours in her ureter and her kidney! we have an appointment with the Dr on Monday to get the pathology report from the biopsy taken. The Dr "thinks it looks the same as the tumour he removed in December, Low Grade). He said at the hospital that he would recommend the removal of her kidney and ureter! my Sister was absolutely in shock to say the least as there had been NO mention of any problems with her ureter or kidney beforehand. He also said that her actual bladder looked really good. So I have been trying to do some research and I have seen where it has been known for cancer to seed in the ureter when a stent has been used???? so I would be very appreciate if anyone has any knowledge of this happening or have had it happen to them.
Thank you all in advance, we are just so stressed and confused at the moment.
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Thank you so much, she has had a CT scan yesterday to check on the health of her other kidney, once her Dr here gets the results of that we are off to see the other Dr a Professor to get a second opinion. I will keep everyone posted hopefully he will give us some good advice (Fingers Crossed) Thank you all again for the support and help it is really very much appreciated.
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2 ReactionsUpdate other Kidney is perfectly healthy, so we just wait for an appointment with the Professor.
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2 ReactionsGet a second opinion asap and also consult a nephrologist and oncologist. It’s a lot of work but will be worth it. They may agree with the urologist but then at least you’ll know you made the right decision. I was diagnosed with UTUC in 5/22 and my first urologist was ready to schedule a nephrectomy that day. I got a second opinion and this doctor said NO to the nephrectomy and ablated my tumors. So far nothing has come back. I have a cystoscopy every 3 months to check my bladder but I still have my kidney.
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2 ReactionsThank you so much, we have just received notice that her appointment is on 17th May ( as Professor is away on holidays.. of course) I will let you know how we go. Thanks again for your advice
@fay48 In the mean time, how is she feeling? Am I correct to assume that she is still getting care locally?
Hi Rosemary, she is feeling well, she will most likely see her local urologist soon to have the stent removed, but other than that she will see the Professor 17th May.
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3 ReactionsI know its hard to wait! Glad she getting a 2nd opinion.
Be sure to write down your questions as they come up. It'll help reduce the stressor as you wait.
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1 ReactionHi Rosemary, thank you, yes we have lots of questions and I have prepared a folder with everything in it from start to now, so hopefully we will have everything we need. Will keep you posted.
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1 ReactionHi everyone, just wanted to update you all on how my Sister is doing, she had her keyhole/robotic surgery on 18th May, to remove her right kidney, right uterer, right bladder cuff, surgery took a bit longer than expected (3 hrs), but Dr said all went well. She has 7 incisions, lots of bruising. She had to have the catheter in for 6 days. She has been at home since wednesday, catheter came out on friday, since then she has been experiencing a heavy/pressure feeling where one of the largest incisions is, which is just above the pubic bone, we are not sure if she has just stretch a bit or what, but sitting up with her legs out straight and taking panadol each 4 hours seems to be holding OK. All her wounds look really good, bruising is subsiding, Urine is clear and normal, temperature is normal so all in all probably the best we could hope for at this stage. Thank you to everyone for their support and kind wishes.
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1 ReactionMost Recent update on my sister.
Spoke to the Dr today post-op appt, pathology was "HG Papillary Urothelial Carcinoma, grade 2 TCC, with invasive subepithelial connective tissue; no evidence of CIS; Margins clear. Pathological Stage pT1.
Dr said he got everything with clear margins, so going fwd she has to have 3 monthly monitoring, gp to monitor kidney function & Blood Pressure.
So all in all a pretty good result, as could have been a lot worse so very grateful we got it early.
Thank you all so much for you prayers and good thoughts.