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
Sweety if u don't understand why then ask the question to your medical team.
Have u been given a phone number for a nurse on your team. Give her a ring. She is there to answer your concerns.
Please reach out to your medical team. If u not happy with what they are suggesting ask what other options are available.
Ring them...they are there for YOU...ring them
Hope this helps...
Hugest hugs...
Yes sweety...mine has spread to my lungs. Found out just before Christmas. Consolation for me was I was told that it is kidney cancer in my lungs, which is slow growing. Not curable for me but oncologist said very treatable.
Not the news I was expecting but I have taken it on the chin and live each day as it comes. I have good days and yukky days but I try and find joy in the little things. I get very tired so I pace myself. Not easy for a person who likes to keep busy, but I am learning. Lol
Just had my recent scans last Saturday results are due 31st. If the lesions have grown it will be immunotherapy, targeted therapy or both.
There are others in this group who's cancer was in their adrenal glands.
Start a new feed and mention it they may respond.
Many people go on for many many years, cancer treatments have come a long way.
So be hearten sweety...remember ask your questions when u see your team. If u forget u can always ring your nurse.
Hugs sweetheart
Hello Janey
As Fleabane has said, there are some of us who have had their cancer spread to the adrenal glands, and lungs.
I know it sounds awful, and you are probably in shock, but try not to panic. After immunotherapy, my tumours shrank by more than 50%, and are now dormant. The ones on the adrenal glands disappeared. My cancer has stayed dormant since treatment. I was diagnosed in June 22.
When you see your oncologist, they will have a treatment plan ready for you. It will probably be immunotherapy, as that is the most effective treatment for most kidney cancers, which are slow-growing.
If you can distract yourself by doing activities you enjoy whilst you wait for things to happen, it will help to lessen your anxiety. There is also lots of advice about how to cope with this waiting time, and the sort of questions to ask at your appointments.
I wish you well, going forward. Do keep posting on here...you'll get lots of support and reassurance!
sending hugs
Kate
Wow this is amazing.
My Mum was diagnosed with KC on the pancreas in October. She started immunotherapy in January. She’s had two round with a scan today and seeing the oncologist tomorrow. I’m unclear of how long she will be on the treatment for. I’m not sure id my parents tell me everything as I’ve had heath problems myself.
my Mum had Kidney cancer back in 2007 and had her kidney removed with no further treatment.
My Dad is just recovering from Pancrearic cancer, he had the whipple and chemo two years ago and he’s doing ok thankfully.
husband was was told he has squamous cell carcinoma last year but doesn’t need anymore treatment.
I just feel overwhelmed by it all to be honest and work more to distract myself.
I’m hopefully that there’ll be shrinkage of her lesions.
You’re all incredibly brave xxx
Love your positive vibes . I had grade 3 rcc resulting in radical nephrectomy in june 2023. No spread then but 6 weeks ago they removed my opposite adrenal gland as it had a small nodule which turned out to have cancer cells in it. The oncologist is referring me back to urology and hopes he wont see me again so he sounds positive. Hope my scan on friday will be clear but if not it sounds as though there is still hope to go on for more years which I hope as I am only 61 x
Im two years on now from having my kidney removed, it took me a while to recover but two years down the line I feel fine and just have yearly ct scans to check all is still well. Hopefully you’ll be the same once you’ve had the surgery. I was in complete panic mode when I had the initial diagnosis but with hindsight I wish I’d worried less, you’ve got age on your side and hopefully you’ll make a quick and full recovery.
Hi les77 how r u doing did you have your kidney removed? And what stage did it end up being? Am going through the same thing at the moment am also 47 year old male with a 5cm solid mass on left kidney, ct scan showed no sign of spread. Am having all the kidney removed in the next 6 weeks
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