Evening all,
This is my first post, and it a bit of a long one (sorry) !
I’ve been dealing with what feels like a long and frustrating journey since my potential RCC diagnosis, and I’d really appreciate any advice or insight on whether this timeline is normal or if I’ve just had bad luck. Here’s a summary of what’s happened so far:
Reoccurring UTIs
Since January 2023 I have been experiencing frequent UTIs, slow flow and bladder contractions which prompted further investigation.
February 2024 – NHS Ultrasound Scan
The scan was reported as clear, but the following observation was made:
“The urinary bladder was fairly distended with a pre-micturition volume of 76ml. Post-micturition volume measured 64.8ml.”
This doesn’t make sense to me and raises doubts about the accuracy of the scan.
This scan was only reviewed by my GP, after I realised that it was missing from my NHS app results, after seeing the results of the October scan.
October 2024 – NHS Re-scan
A lesion was identified in the right kidney, measuring 23mm × 22mm × 20mm, with both solid and cystic components.
15th November 2024 – Private Appointment
I had an urgent three-phase contrast CT scan, which showed a Bosniak 3 or 4 lesion in the right kidney. This was then sent over to the Consultant at the NHS hospital, to whom I had already been referred to via the GP off the back of the October NHS Re-Scan. The Private Consultant advised it would need to be surgically removed.
22nd November 2024 – NHS Contrast Ultrasound Scan
The lesion was identified again, measuring 22mm × 21mm × 17mm.
Post-contrast imaging showed initial hypervascular peripheral uptake with washout in the later phase.
Conclusion: The features were suggestive of a sinister nature, likely renal cell carcinoma (RCC).
5th December 2024 – Consultation with Specialist Doctor
I met with a specialist who requested an urgent chest CT scan. I told them about the finding from the Private Scan and showed them a copy of the report that had been emailed to their Consultant. They advised, that I would need surgery to remove the lesion.
9th December 2024 – Chest CT Scan
The chest CT identified “solid too small to characterise” lesions.
16th December 2024 – SMDT Discussion
My case was discussed at the Specialist Multi-Disciplinary Team (SMDT) meeting, but only the chest CT scan was reviewed. To be reviewed again in three months.
Since 16th December, I’ve been chasing updates weekly, as the SMDT meets on Mondays and the MDT on Tuesdays.
Last Thursday 9th January, I was finally told the NHS never dowloaded a copy of my abdomen CT. This has not been reviewed by SMDT.
The private CT scan of my abdomen, despite being sent to the NHS hospital and reviewed on 10th December, was never downloaded to their system and had since been lost. The Private hospital were able to give me very specific details, of when it was reviewed and how many times it was reviews, but download never occurred. The private hospital spoke directly with the record department and they confirmed that they now do have the scan, however, the team dealing with my case don’t !!
A second three-phase CT abdomen scan was urgently booked yesterday and completed this morning (14th January 2025).
Unfortunately, it will miss the cut-off for the SMDT listing this Monday coming.
I’ve known about the possibility of RCC for nine weeks, but progress feels incredibly slow. I feel like I’ve had to chase every step of the way, almost like pulling teeth. The delays and miscommunication have left me feeling like a nuisance rather than a patient needing care.
Has anyone else experienced delays or issues like this? Is this a normal timeline for cases where RCC is suspected, or is this just bad luck? I’d really appreciate any advice or guidance on how to navigate this.
Thank you in advance.
Jo
(F 47)
Hi Jo, I was diagnosed with a kidney tumour (picked up incidentally in another ultrasound scan for my liver) and my Gastro consultant was informed straight away. She immediately referred me for a CT scan with contrast which I had on 20/11/22. I was in shock and complete denial as most people are. I was convinced it was just a cyst and so didn’t chase up the results. I was due my out patient appointment with my Gastro consultant anyway and assumed she had the results ready. One of the nurses rang to change my appointment to a telephone appointment and this made me very reassured the lump was just a cyst. I said this to the nurse who knew nothing about the scan. Anyway later that day I got another call from the same nurse changing my appointment back to a face to face. It was then I knew something was up. She wouldn’t say why but said my consultant just wanted a chat etc. Anyway I went in 22/12/22 and was told it was a tumour, I nice early Christmas present! The scan report had just been mislaid but the nurse found it in someone’s tray. My Gastroenterologist told me the news and said it was very small, 2.9cm on the edge of my left kidney and confined. No spread etc. She said she would take all the information to MDT team immediately. They looked at it on the 29/12/22. I had a meeting with my surgeon who told me they would to a robotic partial nephrectomy. I had my operation on the 20th February 22. I had a further operation (embolisation) on the 21st at another hospital at about 9pm due to internal bleeding. I was discharged on the 24th February. I hope this timeframe helps you. I do think it’s a very good idea to chase everything up. I am on first name terms with my Gastroenterology secretary and this has helped me immensely. Please feel free to keep posting on this site. There are so many wonderful helpful people on here.
Thanks Cilla,
Thank you for sharing. I have emailed this morning, and will give them a call too.
Thanks Jo
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