Hi,
first post here, but I thought I would share my experience so far, along with a timeline of everything and what to expect, which seems to be a common question, and it might be helpful.
I'm 47, Male, and in November 2024, I had a single episode of gross Haematuria (blood in urine), completely painless but it appeared there was a lot of blood and clots. I visited the doctor the same day, by which time the urine had cleared up, but when she tested my sample it still had detectable blood. The doctor referred me to urology and booked an ultrasound scan.
The Ultrasound scan was 2 weeks later, and the radiologist gave no indication anything was amiss, other than to say she would send the results to the doctors that day. The following evening the doctor informed me to tell me a cyst and a 2.5cm solid mass had been detected in my right Kidney, and that I was to go for a cystoscopy and a CT would be arranged.
9 days later I had a cystoscopy in Glasgow (nearest Urology dept) they found the bladder to be clear, but were concerned that at this stage a CT had not yet been done, so they arranged it though Greater Glasgow and Clyde health board to speed things along.
The CT was 1 week later, and a week after that is was confirmed I have a solid mass 3.2cm that was likely cancer and would need a follow-up CT of chest and abdomen (Which I figured at the time was to stage it, so I had a very good idea at that point where this was going)
At the very end of December I had the follow-up CT, and 10 days after contacted by the consultant Urologist who confirmed it is very likely cancer, but with no visible involvement of nodes, or visible metastases, so it looked like stage 1 (T1a mass) but that a biopsy was required.
At the very end of January I had the biopsy. This was the part that had the longest wait, with results discussed during a face to face consultation with the Urologist on Wednesday this week (21st March 2025)
Biopsy has proven it to be a Clear Cell Renal Cell Carcinoma. Unfortunately is is located in the centre of the Kidney, near the renal pelvis (so it almost certainly caused the initial bleed) and the major blood vessels, so it will be a complete pain to remove.
They will attempt a partial nephrectomy towards the end of April or beginning of March to preserve the kidney, but due to the location of the tumour this may not be possible. It may be the case that some cancerous calls are left behind, so follow up with immunotherapy is likely.
I had thought early on that being a small tumour it is only stage 1, however the consultant is reluctant to stage and grade until after the operation because of where it is and how it looks on CT, it might be possible it has invaded blood vessels and other structures, which would make it a stage 3.
It all takes time, and is a lot to take on board, but here we are.
Hope this helps someone just starting out on this,
Les
Hello Les77
Welcome to the Online Community and the Kidney forum.
I am sorry to hear of your diagnosis of kidney cancer and I understand that it can be a difficult time. Thank you for sharing your experiences so far and I am sure that by sharing your experience and timeline will help others who are going through this process.
I wish you well for your surgery and hope that they can remove what is needed.
In the meantime if talking things through would help, please do give the Support Line a call. They are there from 8am -8pm daily.
Once again thank you for sharing your journey so far.
Jane
