Today’s urologist visit - at last!

Today, I had my long awaited urologist appointment, and I feel a little stunned. I don’t expect anyone to read this, but I think I might need to write it down.

A little history: 3 years ago, after a collapse at home, a CT scan identified a lesion on my left kidney. The consultant treating me was in a rush, and according to his understudy, had an impending tee time, so after seeing the guy in the bed next to me, rushed out without seeing me.

He missed the mention of the lesion, and it was a year before a series of coincidences flagged it up. It’s a little difficult knowing that they knew I had this and didn’t tell me.

At the eventual first consultation, I was told I had cancer, that due to my existing extensive health issues, it was unsafe to remove, and decided that the way forward was a cycle of six-monthly scans and conversations to monitor things.

Because there is no biopsy, they won’t write down the word cancer anywhere - my GP says that nothing in their reports say I have cancer, therefore I don’t have it, but the urologist tells me I have. I actually do sort of understand this, but this is particularly unhelpful.

I gave a slow growing cancer, without treatment, and there are many people who have this crap a lot worse than I have, but that c word really plays on your mind, and there is no help to be had. My wife is the most wonderful, caring thing you could ever wish to meet, but her telling me not to stress really doesn’t help.

The six-month cycle - I had a consultation April 2025 where I was told the lesion had doubled in size, that they would ordinarily remove my kidney at this point, but due to existing issues, they couldn’t do this, and pretty much, that was that.

I left the appointment stunned, but as these people never send me a copy of the letter they send to the GP, no matter how many times I ask them, you don’t exactly know what they are saying.

My next CT scan was September 2025 with a scheduled follow up 3 weeks later. The follow up has been rearranged three times, and this was today’s appointment - nearly 6 months after the scan that we are to discuss and 11 months since the last consultation. Really a case of ‘let’s discuss some obsolete data”

I saw another consultant I have never previously seen, and she apologised ‘on behalf of the hospital’ and asked if I wanted to stop having the scans until my health deteriorated - because of an unrelated back issue (I really am a medical nightmare) CT scans are really painful and take weeks to revolver from.

I was told the leison was now 4.9cm x 5cm x 8cm.

I am struggling to come to terms with what she said next;

I was asked if anyone had discussed a Radio frequency Ablation ( it appears to be a horrid procedure involving needles and being fully awake). Apparently, they can be quite effective, but they only really work on lesions less than 4cm, which of course it would have been before it doubled in size.

Surely, the time to discuss this was last year? Surely this is the point of their watching wait approach?

I feel like there was an opportunity to prolong my life, and this opportunity has now left the building.

I have used the word ‘lesion’ multiple times, but I should probably have used the word ‘tumor’.

I have gone on at quite some length, but imam not in a great place just now, and I did recommend that you shouldn’t read​:grinning_face_with_smiling_eyes:.

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Hi Moss, That really appears to be a list of calamities. I am so sorry that your condition has resulted being in the place you are at. Like you I had a tumour of 8cm which , in my case, resulted in my left kidney being removed in 2018. I was initially told by my consultant that he was 98% certain it was malignant, but in the event it turned out to be benign . Nice to know , but not much help as it was gone. Since then my Egfr has steadily dropped to 21. What options, if any, are they giving you? Is keyhole surgery a possibility ? As there was no biopsy done, (same as me), how to they know it is malignant? Other than the mental stress, which I can imagine is enormous, what physical symptoms are manifesting themselves.?

You have my best wishes and please let me know . I am off to Crufts for a couple of days leaving tomorrow, but back on Friday so I will be out f touch until then . I am an old fogey who refuses a mobile phone !! B

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Oh Moss, this is a horrendous account of your experiences! I can only imagine the torture that you and your wife have been through. Sending hugs but wish there were something I could do for you. x

Maureen

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