Tale of Two Tumours!

Diagnosed in January 2025, with Stage 0 Grade III TCC Bladder, I was offered the choice between Chemo and a Cystectomy.

I chose the Radical Cystectomy, and a Prostatectomy.

Personal choice, and to be honest not a huge deal in the grand scheme of things.

Thing is as part of the work up I had a Pet/CT scan.

A 12mm lump was identified on the Left Adrenal gland, but it was not particularly 'active' on the scan so was more of a curiosity than of much concern.

I did not have the Radical Robotic Cystotectomy, and Prostatectomy until mid June in the end, but in the intervening period I did have a number of other scans which showed that the 'lump' had grown.

When I had the follow up outpatients appointment with the Surgeons, and effectively discharged from their care, I mentioned the Adrenal lump, and a referral to the Endocrinologists followed.

Having put a bit of weight back on after the surgery, I started losing weight again, and was losing my apetite. Work was also becoming more difficult.

I had to have some blood tests, and two 24hr urine collections prior to seeing the Endocrinologists, and eventually saw them in early January.

Whilst ALL the tests returned 'normal' results, it was decided to remove the lump as it had grown since first detection doubling or more in size over the period.

Thus, pretty much six weeks after that appointment I underwent a laproscopic Adrenalectomy.

It turned out to be a good choice, as when removed it was discovered that it had adhered to the Spleen and other things, probably the bowel too.

So eight weeks later, with now a total of nine, possibly ten abdominal scars in addition to the Ileostomy, I went back to see the Endocrinologists for my follow up appointment.

Following the removal of the lump/tumour my apetite has returned, and having regained about half-a-stone in weight I'm looking and feeling better apparently.

The surprise I got was the news that whilst not wholly 100% a Phaeochromocytoma it is officially characterised as such.

So, samples taken for Genetic testing, and recruitment into a research study, and annual follow ups for the rest of my life are apparently what I have to look forward to now. LOL

Unsurprisingly, if one appeared on the left, one turning up on the right is not out of the question.

Unfortunately the genetic testing takes some months to do, so I will not find out those results until I go back in six months.

Regarding the TCC Bladder, after the inital Rigid Cystoscopy where the original tumour was removed, I as is common underwent another four weeks later to widen the resected margins to ensure they had got ALL the original tumour.

That lot was -ve, however in the four months between then and the cystectomy another Grade II tumour had developed!

BCG 'chemo' is likely to have prevented that, but after chatting to a colleague whose mother had been treated for TCC bladder, and BCG chemo, they were still finding new tumours cropping up eleven years later!

So if you have to put up with recurring bladder tumours, and repeated BCG treatments do not lose heart. At least you are in the system, and any new tumours can be found at an early stage.

I was very fortunate that my tumour when found had not broken through the bladder wall. I had no pain in my lower abdomen, and the majority of any blood in my urine was microscopic, and it was only a tiny amount of frank blood at the end of the stream when I peed that led me to go see my GP.

I did have some loin pain, though intermittent, and with a history of Kidney stones thought it was those. The fact that I actually did have five kidney stones made the news I had bladder cancer a huge surprise!

So, I guess my view is, be glad that your cancer has been found. It is not all wine and roses, but it is far better than the alternative.

I lost my maternal grandfather to undiagnosed bladder cancer. He was finally diagnosed after being admitted to hospital due to confusion. He died less than two weeks later, the confusion being caused by brain secondaries.

Treatment pathways are practiced and well tested, and even if you have to put up with new low grade tumours being discovered, they can be treated, and dealt with. The ten year follow up protocol for those who don't have recurrance, ensures that nothing slips through the net.

So stay well everyone, don't let things get you down and try to stay positive.