Ureteral Obstruction

I have been undergoing investigation since November 2021.  I had left flank pain and what felt like a swelling in my back with consideral pain in my lower groin.  I had various scans, as well as an endoscopy (sliding hernia) Ultrasounds and Ct scans with dye, where I was diagnosed with hydrophenrosis. I had a JJ stent in August 2022 which was removed 8th September.  Another ultrasound in the October where I was asked if the stent was still in situ? as a blockage was evident.  I then had a renal scan which showed a flat graph of take up and the scan showed that the kidney was only working at 18%. I also had to provide stool sample which resulted in the need for a colonoscopy due to blood and inflammation sisal polpys were removed (have yet to be advised on results of these) On Tuesday I was due to have a uretescopy however they were unable to complete this as unable to find uretha opening.

I have been told that I should be receiving an appointment for a further renal scan.

I understand the need for the investigations as have lost over 4 stone in weight, but do not feel that anyone is actually communicating with me.  I will not be speaking to consultant for a further 8 weeks (telephone consult) - what do I ask?

Both my parents have had cancer my dad stomach and my mum has had sclc (in remission) bladder cancer (ongoing cystoscopy 6 monthly) breast cancer ( being treated with tamoxifen) .

Any advice most welcom

 

  • Hello y60sam, 

    I am sorry to hear you have been having all these investigations and I hope that it won't be long until you receive your appointment for your renal scan. It's a shame though that you feel no one is actually communicating with you and 8 weeks is a long time to have to wait to talk to someone. 

    It's difficult to advise what questions you should ask given your very specific situation but hopefully the coming weeks will give you time to think carefully about these. I would advise you write them all down on paper so that you don't forget them when you have your phone consultation. Time can pass quickly when on the phone and it's easy to forget to ask the questions we intended to ask but writing these down will ensure you have some bullet points to refer to when talking to your consultant. Our nurses are also available on this free number 0808 800 4040 if you would like to talk things through with them - their line is open Monday to Friday from 9am to 5pm (but closed Easter Monday). 

    It may be that some of our members have had a similar experience before and that they may have some helpful suggestions for you so I hope that they will be along shortly and that they will share their story with you. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Hi Lucie 

    Thank you for your prompt response,  I do appreciate your advice and will have a pen and paper at the ready.  

    Kind regards

    Sam