Incidental finding of tumors on both kidneys on CT imaging in turkey prior to weight loss operation.

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Hi, I'm new here and I'd like to give the story so far.

A pretty long but interesting read I hope.

A 6.5x5.5cm tumor suspected RCC was noticed on my left kidney and a 3x2.5cm tumor suspected RCC was noticed on my right kidney on CT imaging prior to weight loss surgery in Istanbul, Turkey - this year April 22 - the surgery was refused.

However at the time and still now there is no evidence of spread anywhere else including lymph nodes, lung and bone - no spread noticed on all scans or nephrectomy (see below)

The take away point being I had no symptoms whatsoever for these tumors and I was tagging along with my wife for the weight loss operation - one which I didn't really need I was 20st 6 at 6ft 2

With an ideal weight of 15/16 stone - I'm now 17.5 by tagging along with my wife's healthier eating plan and losing weight steadily as the weeks go by.

I feel lucky to have found these tumors but have been through a rollercoaster of emotions and it's not getting easier at age 44.

I'm in the hands of the NHS now and have had a left kidney nephrectomy 5 weeks ago, I am having a biopsy on the right kidney mass at some point in August, however my surgeon strongly suspects it to be malignant looking at the imaging.

If it is benign there is treatment to shrink the tumor if it's malignant he is going to do a partial nephrectomy on the remaining right kidney.

I have recovered well from the left nephrectomy and I go back to work Monday, I work for an environmental services company as a tanker driver but I'm going back for a week on light duties before we fly to turkey on holiday in early August.

Above is an image from the left nephrectomy tumor lab results, tumor has been graded a 2a with a nuclear grade of 3 out of 4 and I'm therefore an intermediate risk with 10 years of scans to follow.

I am desperately trying to find information on people who have survived RCC for 20 years plus and I can't find many at all especially those with bi lateral tumors.

I'm feeling a bit hopeless, desperate and low I am on a trial of mirtazipine anti depressants to see how I go but I just cannot keep thinking the worst.

My wife has been amazing but for now for me it's about facts and I can't find them for long term RCC cancer patients.

Amgwasme over 2 years ago

Good detailed objective account of journey to date. I have found that being as empirical as this with your journey is very effective for managing psychological challenges that cancer throws your way . I’m 6 yrs into my journey, again 6ft 5ins, 16.5 stone no indication of anything wrong and until blood in urine 5 yrs 3 months ago and 6coms tumour on right kidney , operated on in May 18, sadly December 18 discovered in my spine , mastasticised and now on a palliative journey . Secondary bone cancer spread across hips to neck , rib cage but not yet to vital organs. 2 courses of radiotherapy in last 9 months to breakdown tumour growths on spine and various painkillers and steroids to manage pain when required. Again like yourself, normal questions around how long left , I guess nature , luck and cheemo tablet effectiveness will slow advance of disease . IF all continues 7-15 yrs from diagnosis and operation so incurable, enjoying life best I can , full NHS support from Edinburgh oncology department Western General, no issues in delays at all .
Keep positive matey , your not alone . Keep the faith and whatever you do be objective and focus on your own journey. Everyone is different medically , just don’t let it pull you down for days on end. You can’t change what it is , just manage the condition and be strong for family around you , I find they can tend to suffer more than I do

Ps I’m 57 and cancer would have been in my kidney since 49 yrs of age 2017

take it easy out there

Gary

Mmum over 2 years ago

Pumpypants said:
I am desperately trying to find information on people who have survived RCC for 20 years plus

Hi there, I hear you. It might not get captured in a place accessible to us. But I get it's important to you. Here's a 20 year survival case - I'll post the link, but it might get removed by the moderators. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5503444/

Secondly, why not strive to be the first or a pioneer? Treatment is advancing all the time and today's stats are out-of-date for what is currently achievable with today's approaches. I don't believe survival rates from people diagnosed 20 years ago are relevant today because today's outcomes are infinitely better.

Mmum over 2 years ago in reply to Amgwasme

Hi Amgwasme I'm at the Western EDI too. Maybe we have the same consultant?!

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Incidental finding of tumors on both kidneys on CT imaging in turkey prior to weight loss operation.