Kidney issues

Hi. New here but think it's good to get stuff off your chest. All my symptoms started back in February, in gran canaria about to run an ultra marathon and started getting pain in my abdomen and round in my left hand side lower back. Started peeing blood so just assumed it was a UTI which is what my doctors said when I got back in the country. So was given antibiotics, seemed to clear it up but could sense something still wasn't right. 6 weeks later pains and blood came back so off I went to the doctors again for them to now tell me I had an STD and had to go to our local sexual health clinic....... as you can imagine that went down well with the other half.

Went to clinic for them to tell me i shouldn't be there i need to get to A&E now. So with a week in hospital and a CT scan told that i have an enlarged kidney that has next to no function. Discharged i was asked to go back 6 weeks later for an MRI. Had a letter a week or 2 later saying that the kidney should come out as it's not doing alot so no point it being in there and causing me issues. Was told it more than likely isn't anything sinister but got to treat it as cancer so can't remove it key hole has to be a full opening. 

September came and I was on the table have my left radical nephrectomy. Out of hospital 6 days later, 35 staples and a rather large wound across my front. Went back for my follow up and was told I had clear cell renal cell carcinoma. T3a, N0, MX.

Back in a few weeks for the first of 6 monthly CT scans for the next 5 years. 

Being told stuff like this when you class yourself as a fit healthy person really messes with your head. Not that it matters how fit and healthy you try to be.

  • Hello MarkyP
    Welcome to the forum and thank you for sharing your story with us.

    It sounds like it's been a real rollercoaster of a year for you. From being in peak physical condition to having recently had major surgery and everything that goes with your diagnosis it's understandable that you're struggling to process everything. 

    We've some information our website about coping emotionally but I wonder if you might find it helpful to talk with one of our team of nurses about things. You can call them on 0808 800 4040 (Monday to Friday 9am to 5pm). 

    Physically it will take time to recover but be kind to yourself and give it time for your thoughts and feelings to rebalance too. 

    Keep in touch MarkyP. The forum is here anytime you want to chat with others, ask questions or just offload things to people who understand. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Hi Markyp

    just read your story, and have to say you had exactly same situation as my partner. He too started with pain, peeing blood, was given antibiotics, then after all the usual appointments was told it's tumour on kidney. He has now had it removed,Unfortunately they found spots in bladder which have now been removed too. His kidney was removed in March this year, he told the consultant last week he had pain where the kidney was so now is having another ct scan, wondered if you were finding this also ? Best wishes to you, pray all goes well. Juliaann.x

  • hey just wanted to pop up and say hi , your story is very similar to mine with the blood in the urine etc , i was diagnosed with rcc t3a too at the age of 4;my tumour was 9.5 cm so i too had a radical ! kidney cancer uk is a good forum to join if you ever want advice from us kidney cancer patients 

    jo

  • Hi Juliaann.

    Thanks for the reply. Sorry to hear about your partners experience. I was told all mine was contained in the kidney and doesnt look like it had spread. I have had a couple of small twinges in the area the kidney was in but I just put it down to things still healing as it's only been 5 weeks since my operation. I do have a CT scan in a couple of weeks so will know more then. 

    Send my regards to your partner and will be in my thoughts. 

    Mark x

     

  • Hi jobie5

    Thanks for the reply. Wow at the age of 4 it was picked up and removed, not the most comfortable of procedures for an adult so cang imagine what it was like at that age. They think my kidney had never been working properly and the cancer could of been in there for quite some time. Will find out more in my next CT scan so fingers crossed.

    Kind regards

    Mark 

  • Sorry i meant 44 , i was diagnosed 2 years ago now 

  • Ahhh I see. So are you having CT scans every 6 months now ? 

  • well for the first year and then it was supposed to go annually , but at my year scan they found a shadow on my spleen so i had a few extra mri scans which turned out to be sarcoidosis! They now don't want to see me till next April which freaks me out a bit 

  • I can quite imagine it freaking you out. I was freaked out knowing they want to see me every 6 months.