Hi Angelina , I think you will get a lot of info and support on these two closed facebook pages

UK KIDNEY CANCER SUPPORT   AND KIDNEYCANCER UK SUPPORT

Im a member as I had my kidney op just under 2 years ago

Alan

hi 

please see my post as I just have been told I have renal cell cancer from removal of my adrenal gland and I am so scared, currently waiting to be referred to urology and same as you dreading it has spread somewhere else 

cara 

Hi, As far as I can make it out my kidney cancer spread to the adrenal gland and although there was something showing on the scan at the time of the removal of the kidney, the hospital chose not to remove the adrenal gland as they thought it was alright. Over the next 5 months a scan showed there was an increase in size on the adrenal gland and was asked if I wanted it removing. The results showed it was malignant and was a shock to the specialist. 

The last scan 3 months ago showed thigns were ok but over the passed 11 weeks I've had a really bad headache which is there day in day out. It is on both sides and nothing shifts it. Im awaiting results of a head scan. 

Im just worried that the adrenal wasnt removed when the kidney was and the cancer was left to spread. I assume its in the blood if it spread to the adrenal gland. 

It is possible for KC to spread to the head and brain, it happens to a few unfortunate patients, but there are many treatments avaiable to deal with it, surgery specific radiation treatment things are moving forward so quickly at the moment.  usually the soft tissues of the body are where KC spreads to first Lung , liver pancreas, then bone , KC is sneaky it can lay dormant for months and even years, I think that having the head/brain scan was the best idea,  headaches are common in KC patients we get stressed we get anxious and I suffer from them on an off al the time, my advise is try not to worry, wait for the results of the scan and take heart in the fact that if anything was amiis it can be dealt with alan

Following the removal of the kidney and later the adrenal gland, I was suffering headaches. Luckily the head scan was clear and it was noted the medication I was on was causing them. 

Anyway on another note, last month I had my yearly scan only to be told there is a tiny lesion on the remaining adrenal gland and need to wait for a follow up scan in 3 months time which will be mid Dec. Im worried that it too will be malignant and i know you can't live without your adrenal glands. I understand you'd have to take madication for the rest of your life. Whats the chance of getting cancer in the remaining a/gland. The scan last Sept was clear. 

Has anyone with kidney cancer had both their adrenal glands removed. 

New update

Following a recent scan, the surgeon called the other day to say the kidney cancer has now spread to the remaining adrenal gland. Due to Covid 19, he cannot say if the operation will go ahead at the moment. There maybe a window of hope in the next week or so but who knows. scary times!! 

Have been told once the remaining adrenal is removed then steroids will need to be taken as you cannot survive without them. Life can be so cruel. 

Hi, 

hope you don't mind me asking but what/if chemo or radiotherapy did you have pre or post surgery ?

Best wishes

Hello, 

Following the removal of one kidney 4 years ago and then the removal of both adrenal glands at different times, no actual treatment was offered for the cancer. As far as I'm led to believe that once the tumour has been removed then the cancer has gone! Obviously I know its not the case with me as I've had 3 operations in 4 years. My question to the surgeon in April when the remaining adrenal was removed ' where might my cancer go next', he said it could spread anywhere. Scans are every 6 months to check if all is ok. Life can be a ***.

Thanks for replying Angelina.  Hope you are well now. Wish you the very best for the future x

It is 2 years since my last post. Following a recent scan I was told today my kidney cancer has now spread to my pancreas and right lung. It couldn't get any worse. Now waiting for an appointment to see a new consultant in the hope we can discuss what drugs I can take to try to shrink the tumours. Also waiting for the original letter explaining their findings of the scan