I don’t know whether it such a good idea for me to be delving in to the posts on here, it’s making my mind boggle. I have my consultation on the 22nd July and I want to be prepared for all eventualities and to have at least a vague idea of what the options set out entail. Another thing I want to know is how long do they give you to decide what option, if indeed there are options. I’ll set out below what I know so far and can only hope that someone has had similar so they can steer me in the right direction of what treatment might be offered.
my journey started with slight blood spotting in my pee just once followed a few days later with a pain in my side that lasted 2 days which I thought might be appendicitis. After that I had a show of stringy type blood. Which is when I went to the doctor.
I had blood tests for kidney and liver function as I’m on simvastatin and they came back fine. I had ultrasound scan which showed 2 simple cysts on my left kidney, a slight swelling of my right kidney. They said it looked like I’d had a kidney stone but they couldn’t find where the blockage was further down the line. I then went for a cystoscopy and they found a lesion on top of a swelling right at the site where my ureter joins the bladder. The lesion was less than 1 cm. I then had a CT scan which gave no additional info
I had a TURBT which cleared the lesion and the surgeon pre-op thought the lump was probably a utereocele but when I spoke to him after the op he said ‘well I didn’t expect that!’ He said he found a solid lump which was about the size of 2 peas and was highly likely to be cancerous. He managed to remove it but still couldn’t see up the ureter. He said he’d run the consultant to discuss putting in a temporary external drain from my kidney but they decided as the kidney was healthy it wasn’t worth it for the sake of 2 weeks (that was 3 weeks ago now). So my kidney is still not draining properly although it causes me no pain or any symptoms.
I’ve mentioned in a previous post that my GP surgery decided to break the news of the biopsy results in a very standard letter giving no info only links to support groups. I’ve since spoken to my GP who said the letter from the hospital said it was TCC Bladder Cancer but the meeting had not taken place to discuss treatment and there was no info relating to grade or stage.
Although it says Bladder Cancer I’m not even sure now if I have Ureter Cancer as well or what any options are likely to be. The surgeon did say there would be options which might involve further surgery or radiotherapy. He didn’t put any chemo in the bladder after the TURBT as he said that was useful when there were wispy bits in the bladder but wouldn’t have been worth it for me when weighing up the side effects.
im trying to park everything in the back of my mind till the 22nd but my brain is in overdrive.
linda
