Newbie here, hello

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Never in a million years did I think I’d be joining this forum but hey here we are. I’m 29 yo, female and have absolutely no symptoms, so here goes my story. I had a US less than 2 weeks ago on Sunday 20Aug where they found a mass on my right kidney. This was a follow up after they found something suspicious back in 2019 but that’s another story for another day. Radiographer said her report will contain an urgent referral for a urologist/more imaging. By Tuesday morning, I had an appointment with my GP who had referred me on the NHS via the 2 weeks pathway and also gave me a private referral. Luckily, private healthcare is provided by my employer so I opted for that to ease my mind. I managed to get a urologist consultant the next day who was very concerned about the US report which could mean a full removal of my kidney. He ordered an urgent CT scan of my abdomen and pelvis. The next morning (Thursday), I was called in for the CT scan which was a weird experience given the hot flushes and the panic of thinking I almost wet myself lol. By Friday afternoon, I had a follow up consultation with the urologist who gave me the results of the CT scan. Some good news it was, it was not as big as the 10cm prediction on the US but instead just over 7cm to which he said took it to a stage 2. There was also no spread in the lymph nodes, or any other organs. Thirdly, the location of it being on the very top there was a high chance they could just “lop it off” - phew! But still highly likely to be cancerous.

Next steps was a referral to a urologist surgeon, and another CT scan with dye for my chest to ensure no spreading. Had that done on the 30th, and will be seing the surgeon this evening for the results and the treatment/surgery proposed. I’m praying it’s all clear in the lungs and no mets. I have been told multiple times by both consultants that I’m very unlucky to have this at such a young age and that they’ve rarely seen kidney cancer at my age. Provisional surgery booked in for the 11Sep already, and whilst I’m grateful of the speed of everything… I can’t help but feel like I haven’t been able to process anything or think because of how fast paced things are. I’ve had bad days where I‘m in tears for a while in the evenings and good days as if nothing has happened. I’ve been working still this whole time as with no symptoms, I feel like it’s business as usual and it’s been a good distraction - my mind would be on over drive if I was left with my thoughts all day. 

I wanted to ask people here who have had stage 2 tumours and what surgery option was given to you, was it partial or radical? My preference would be partial, as there is history of polycystic kidney disease in the family. My worry is, i’ll be at big risk of dialysis/kidney function issues with just the one kidney. But will ofcourse discuss all of this tonight with the surgeon.

Thank you for taking the time to read, sorry for such a long post. Stay strong everyone and wish me luck with the results this evening Slight smile

  • Hi Pinkx. 
    Sorry that you’ve had to become part of our community at such a young age but welcome. I’m also sorry that I’ve only just read your post so you’ve likely to have had the appointment with your surgeon now. How did it go?

    in answer to your question however is that partial Nephrectomy was never discussed when my stage 2 tumour was found. Having had no previous history of kidney disease in my family this didn’t worry me. I hope you got positive answers to your concerns about losing one of your kidneys. 

    Keep in touch with the forum as things progress. There are so many lovely people here that have had all sorts of experiences and are always happy to offer advice and most of all caring support  

    Sending virtual hugs  

    Rojan

  • Hi Rojan,

    Thank you so much for taking your time and actually replying. The appointment was a mix, I came in hoping to hear it would be a partial nephrectomy even though I knew deep down it wasn’t going to be, to leaning towards a radical one instead. My surgeon had informed me that the MDT have not actually discussed my case yet but will do so on Wednesday 6th Sep. But from his perspective and also the opinion that he will give on the MDT, would be a keyhole radical was more preferable due to the size and to completely minise the risk of recurrence especially at my age. Although he is a firm a believer of preserving the kidney, the size of it means there’s a higher chance of a positive margin with a partial removal.

    With the MDT still to take place, things and options could change. He mentioned that a possibility of a biopsy prior to the operation could be discussed and a partial nephrectomy (this will have to be open). But again, mention how the risks of these are still greater than removing the kidney. 

    Despite all this, I now have a provisional surgery booked on the 11th Sep. So we shall see what the MDT conclude with.

  • Fingers crossedFor Wednesday 

  • Hi, I had a partial nephrectomy end of Feb...2023...I am now fine. Healed and just about back to normal. It was keyhole robit surgery and was out if bed next day. It is painful fir a few weeks. No lifting for 6 months. You will be tired but thars the thats all the worry. Had my ct scan and no spread. My tumour was stage 4 grade 4 so git it in time. I think you will be ok as lonv as they dont leave you 6 months like me before the op. Eek! Lx

  • Great that you don't have a long wait before your op. Keep positive. Your in my thoughts. Accept any help offered. My surgeon and staff were wonderful, kind and professional. Lx

  • Hi Rojan,

    Massive u turn from the MDT meeting, they changed it to a partial nephrectomy instead as the radiologist and oncologists thought the lump was unusual for cancer, so they said it was only right to preserve the kidney. I had the surgery on the 14th and I am now at home at recovering but boy its painful still.

  • Hi LAR,

    I had the partial nephrectomy instead. The MDT outcome was that the lump looked unusual for cancer in that it had some characteristics of cancer but also benign. And given all other factors, they said it was only right to do a partial and preserve my kidneys. I ended up having the surgery on the 14th Sep already, and I’m back home recovering. Wanted to ask for some tips in terms of recovery? How long did it take for you to feel back to normal etc?