Arranging to have investigations

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Hi everyone and thanks for having me here.

I have some symptoms that could point to kidney cancer. (Over the last five years or so I’ve had two cystoscopies because traces of blood were found in my urine. Both cystoscopies were negative. There was another such finding in Jan of this year by medics testing for something else. My GP pointed to the two negative cystoscopies and said it seems I’m somebody who always has blood in my urine and suggested no further tests. I was happy as I didn’t realise there were possibilities other than bladder issues, and wasn’t keen for an unnecessary cystoscopy. A few months later I started to have an ache in my right side about waist height and behind my ribs. It’s not very painful but it’s always there. GP said some months ago to return if it didn’t go away. It hasn’t gone and it’s still always present. It’s a little more painful now than it was, but I still rarely need painkillers (Paracetamol) for it. Because of that I’ve assumed it can’t be kidney stones as I’ve heard they’re agonising. Finally, I recently had an operation for some oesophageal thing and a few weeks ago received blood test results indicating that my red blood cell count is low. As far as I know that’s a new thing for me.)

I returned to the doctor a couple of weeks ago and I’ve been referred to my local hospital for an ultrasound scan of my urinary tract in just over a month from now.

I have a sort of mini-insurance that would pay for tests, and I’m wondering whether it’s worth using it and, if so, how to go about it. Has everybody here who has had investigations used the NHS, or have any of you seen a consultant privately and had them refer you for tests? I don’t know enough to be confident that an ultrasound scan is all I need, and tbh I don’t have confidence in my GPs to want to look more closely if an ultrasound were to come back negative. Nor does my local hospital have a great reputation. Would a negative ultrasound be a guarantee that there’s nothing wrong, or should there also be a CT scan? I don’t know, and I can’t work out where to go for advice on all this. 

Many thanks for any guidance anyone here can offer. I’m not out of my mind with anxiety, btw - I realise odds are against there being an issue - but at the same time I’m getting older now (64) and these things do happen. I’d just like to have an investigation I can have confidence in. 

  • Hi  

    I don’t have kidney cancer and am not a member of this forum but noticed you hadn’t had any responses yet. In responding, I have pushed your post back to the top of the page and I hope someone with direct experience will come along and answer it. My own cancer is triple negative breast cancer but I did suffer an acute kidney injury and developed nephritis as a result of my treatment. I underwent ultrasound and other tests as they wanted to be sure there wasn’t an underlying kidney issue (there wasn’t). I don’t think any negative test result can be an absolute guarantee there’s nothing wrong. Radiographers are very skilled in their job and I am sure they will take into account the distressing symptoms you have had. I am sure if there is cause for concern they will organise any follows up they think would help. Of course if you have insurance, there’s no reason not to get an additional opinion from the specialist your insurance provider recommends. 

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  • I used the NHS.  I had an ultrasound scan in Sept 2021 and that detected the tumour (although it was advised as "need a CT scan for further investigation").    CT scan shortly afterwards, then urology appointment which advised the kidney cancer.  

    In my opinion it's not worth using the insurance, as at some point you may need to transfer back in, and that will incur a delay in getting an appointment, because the route back in needs an assessment appointment, I believe.  

    A negative US would be closure, probably.  

  • Thank you very much Heart

  • Thank you - that’s helpful Thumbsup

  • Just to add, there are many things that cause blood in the urine, of which kidney cancer is one possibility.  

    There are many people on here diagnosed with kidney cancer, who never experienced blood in the urine, me included.