Fatty benign tumours - angiomyolipomas

Kidney and urinary tract
1

I've had an ultrasound last week as part of the monitoring of two kidney stones, one in each kidney. Now I've been told that I have fatty lumps on my kidney - I don't know if it's just the one or both - and I've got to have a CT scan with contrast so that the consultant can get a clearer picture. I believe these are benign tumours called angiomyolipomas.

Has anyone else got these? Are there likely to be any complications and will I need any treatment?

I thought that the ultrasound would be the usual check and I wouldn't see the consultant for another year, so it has thrown me rather. Any advice would be appreciated.

2

Hi Countrylover.

I have recently been diagnosed with an AML of 6cm in my left kidney. It was an incidental finding from an ultrasound scan to check for gall stones.

Since then I have had the CT with contrast (5 scans in total but all in one appointment) and am now booked for surgery in 2 weeks.

What I know so far is that there are 3 treatment options available;

1 - if the AML is small, they can monitor and will take ultrasound images every so often to check the growth.

2 - they can embolise or cut off the blood supply to the tumour, effectively 'killing' it.

3 - remove part or all of the kidney.

This type of tumour can be a bit tricky. It is composed of fat, muscle and blood vessels. It has a high fat content and is therefore distinctive on imaging which is how they can tell what it is without having to biopsy.

Although usually not cancerous, the problem is that they have 'tortured' blood vessels which can rupture and cause internal bleeding. This is more common with tumours over 4cm and this is why the size determines the treatment. Not sure if you're female or not but pregnancy hormones also encourage growth of these tumours.

My surgeon has opted to remove part of my kidney using a DaVinci robotic technique. It's keyhole surgery so has a quicker recovery time. They hope to only remove approx 10% of my kidney so I should still have good kidney function afterwards. It's a scary thought for someone who has never had surgery before but I have to go through with it!

Embolisation wasn't recommended for me as the dead tissue from having the blood supply cut off could eventually become infected therefore leading to removal of all of my kidney. This is a better option for an older person (I'm 33) or for someone in poor health where a general anaesthetic could be dangerous for them.

From what I understand, once removed there is a slim to none likelihood of the AML reoccurring. Having said this, they don't know a huge amount about this type of tumour - it's fairly rare I think.

I hope this has been of some help to you, all the best with your testing/treatment smile

3

Hi Lupelu.  Thanks for your reply and all the information.  Much appreciated.  Yes, I'm female, but nearly 70, so no chance of pregnancy!  I believe my AML are about 5mm, so very small at the moment.   However, I do know that I have one on each kidney, so I'm hoping that they don't grow any more!

I had a CT scan, but, when I saw the consultant yesterday, the report concentrated on my kidney stones and cyst and didn't even mention the AML, which I was very puzzled about, as well as being rather cross.   I've been in touch with the consultant's secretary and, as soon as I receive the copy letter from the consultant to my GP, I will be seeing my GP to see if he can get in touch with the hospital and ask more questions.

I will be seeing the urologist again in six months and he has requested that I have an x-ray beforehand.  This is mainly, to view the kidney stones, one of which has got rather large, but I'm not sure if the AML wil show up on an x-ray, so, when I see the GP,  I will be asking for an ultrasound instead.   I believe this is the recommended method of monitoring.

I hope that the operation goes well for you and wish you a speedy recovery.

Best wishes.  

4

Thank you Countrylover. Let's hope yours stay nice and small!

5

Hi Lupelu.  I saw that you had got over the operation and hope that things are still going well for you.

Just wanted to update that I decided to change hospitals and my GP was happy to sort it out for me.  I'm seeing a consultant at another hospital for arthritis problems and have also had various procedures there - so they have a lot of info on me - and it seemed to make sense to have everything in one place.  I never really got to the bottom of why the CT scan report didn't mention the AMLs at the previous hospital - very annoying - so I'm pleased that I'll now be seeing somebody else and can start again. :-)  My GP did tell me that, according to the ultrasound, one AML is 5mm, the other 6mm, so fingers crossed that they stay that way.

Take care.

6

Hi have you had the tumour removed and how did your operation go ? The reason i ask is during a scan for something else a couple of years back they mentioned i looked to have a small cyst on one of my kidneys and was told not to worry most people have them as they get older. Then 12 months ago during an ultrasound for stomach troubles it was mentioned again and that maybe the doctor would like another scan done in 6 months just to check it had not grown. 

I went for the ultrasound this week and thought nothing of it until the woman doing the scan said it was same size an i am sure she said it was an angiomyolipoma and think she said 9cm. I stupidly "Googled" it when i got home and was horrified by what i read and am now convinced it could rupture and i will bleed to death soon. I was just told to ring the doctor for results in a week so any advice would be appreciated. Is it a kidney specialist that deals with these ? Thank you.

7

Hi Frances,

I stupidly googled mine as well and there are a lot of scary stories on the internet!

There is a risk of rupture and that's why I was advised to have surgery. The option of leaving things as they were to monitor definitely wasn't advised. The third option was to embolise the tumour- cutting off its blood supply causing it to stop growing and hopefully it would shrink. This was also not recommended as they wouldn't be able to send the tumour to a lab to ensure it wasn't malignant. I questioned if they could do a biopsy to check for cancer then embolise it. Taking a biopsy could lead to it bleeding in which case I could end up needing surgery to remove the whole kidney.

I had a robotic assisted laparoscopic partial nephrectomy on 21st April and am now fully recovered. They made 6 small incisions in my abdomen and took out approx 15% of my kidney. Thankfully it was a benign AML and not cancerous. Unfortunately the next day I also had an arterial bleed so was had to go for an embolisation on the arteries as well but this was totally pain free and they sorted me out quickly.

My surgery was performed by a urologist who specialises in nephron sparing surgery and is one of few surgeons in the U.K. Who uses robotic surgery. I'm lucky to live in the area close to his hospital or I would probably have had an open surgery by another surgeon.

Honestly the surgery was much less painful than I expected and I was back to work 3 weeks later. After discharge I was only taking paracetamol for pain relief and nothing else. I wasn't allowed to lift anything heavy for 6 weeks in case of hernia so my lovely mum stayed with me and helped out.

I hope all goes well for you, it's very daunting knowing something is wrong. Please pop back and let us know how you get on.

Laura

8

Thank you so much for your reply, i feel a bit easier now. I am so happy all turned out well for you.

I will make an appointment with my gp when the results are back and discuss this with them. 

Best wishes, Frances

9

Hi Lupelu,

I was wondering how you are doing. I understand you had a surgery to cut 10% of kidney as treatment for AML. where and which Dr did your surgery. I know it is important to get the best Dr.

I have an AML 2.6 cm (grew from 2.2cm to 2.6cm in 2 years). My Dr. suggests embolization.

Thanks,

Diana