Hi Coco

I am interested in following all the comments on here abiut AML'S.  I was diagnosed in 2009 with one on the left kidney, and told they are rare and that nothing would be done until they reach 4 cms.  I had an ultrasound every six months and it was growing in size,  then ultrasounds went to annually.  In 2016 I was diagnosed with another AML on the right kidney, though much smaller in size.  The ultrasounds have now gone to bi-annually and goalposts have been moved in that nothing will be done until AML's reach 5 cms.  Everything I have read says treatment should be offered when they get to 4 cms as they become less predictable and can bleed.  I have been ok healthwise but am due to go again for bi-annual check in November when I will ask many more questions.  The only symptom I have is that most days now my legs and ankles are quite swollen (old ladies legs and I hate them!) differing by as much as 1" around the ankle towards the end of the day.  I take a diuretic but will be discussing this when I go because it looks like I am holding a lot of water so need to find out if AML's are possibly causing this.  I will report on here the outcome of my checkup in a few weeks.

Hi all,

I was diagnosed with an AML 2017 after a scan for something unrelated.  It was on left kidney and measured at 4cm.  However, I am now experiencing occassional UTI symptoms - stinging when urinating - but also pain in my left side and ribs.  Has anyone else with an AML experienced this sort of pain?  Also I have not been scanned since May 2018, do you think I should push for a follow-up just to check size? Thanks for any advice :)

Hi Yassie,

that sounds scary, did you know you have an AML prior to being an inpatient or was it the haemorrhage that hospitalised you?

I hope you get good news from your MRI.

Thanks for reaching out and have a lovely Christmas.

Megs.x

Jolamine,

thanks so much for your comment.

I am waiting for my appointment letter and I am hoping so will be ok until then. It does stipulate to attend A&E or contact the consultant if I had 'severe' pain and it is painful, but not severe.

I will keep you posted.

Have a lovely Christmas.

Megs.x

Hi Mags41

My tumour was over 5cm and the reckoned that the pain was due to pressure on other structures.  I had been having episodes of very brief, extremely sharp pain for about 6 months that prompted me to pay for a private ultrasound.  I had the embolisation about 4 months later on NHS.  My own doctor was suggesting ovarian cyst.  I won't lie the embolisation is not pleasant.  You're awake throughout - they puncture your femoral artery and guide a series of catheters into the arteries feeding the tumour then they fire some coils in to cut off the blood supply and that's when the pain starts.  They start the pain meds then and they work quite quickly but I had to ask for them.  I was in a lot of pain for a few days after and had to stay in hospital.  

Mine is currently (or was at ultrasound) 3.4x3.5 hopefully I will be ok for a while.

Sounds like a rough procedure! Something which I will have to go through at some stage, I imagine. I keep praying that the pain will go away and the angiomyolipoma stop growing....not sure if I should say praying or dreaming - probably a combination of both!

take great care.

Megs.x

I had blood in my urine, out of the blue, in 2013. The hospital found multiple AMLs in both kidneys, the biggest being 7cm in my right kidney. It was positioned such that they couldn't embolise it, it was monitored and I was told if it progressed and bled then I would likely lose the kidney. The AML remained stable until 2019, when I was in Ecuador, when it bled. I was admitted to hospital as a medical emergency and given 4 units of blood. The kidney was removed, and they found the largest AML measured 13cm. On return to the UK I was scanned and they found the largest in my left kidney, which had been about 1cm, was now 7cm. Within a couple of weeks it was embolised. Since then I am regularly scanned and there has been no change. I had no problems with my kidneys and if it wasn't for the blood in my urine I would never have known I had AMLs. These tumours suddenly had a growth spurt, between my last scan in 2017 and the bleeding in 2019. During those two years I was backpacking round the world and had no medical checks as I would have done if I was still in the UK. The embolisation was painless. Make sure you're monitored, and if you're going abroad, make sure you have good medical insurance!

Hello all,

Sorry if I am posting in the wrong area but it seems right.

I am a fella in his 50's.

After finding this website and reading the posts, I was able to find some relief and reassurance at a time when I was waiting for results (thank you everyone), and so I thought I would share my story so far.

February 2017 - I was examined for an unrealted problem, but it reveiled a renal mass, 3cm and described as 'small', on my left kidney. At the time the consultant told me it was likely to be cancer (90%) and so I was advised that a robotic partial nephectomy was recommended, also saying that I needed to be treated urgently. I agreed and so a date was set. Mixed feelings at that time. Difficult to grasp and did not feel quite real. Whilst waiting I did some research. Two days before the operation I found something that gave me cause for concern and so approached my GP about this. He agreed with me and so with a day to go I cancelled my operation. This was particularly stressful but felt right. I was referred to another hospital.

June 2017 - I attended the hospital where it was decided that given the mass was small, they would perform a biopsy to find out exactly what it was. A CT Guided Renal Biopsy was done and the result given in August 2017. It was found to be a benign lesion, an AML, that required no treatment. I therefore had made the correct decision for me and had avoided an unnecessary operation. Great relief. I was told to have a scan in 2 years time to see if it had changed.

January 2019 - a scan showed that it had not grown. Great news. At that time they advised that if an AML measured over 4cms then intervention would be required.

March 2021 - a scan showed my AML had grown to 4cms. Absolutely gutted and very worried. However, at this size I was told intervention was not required. Thinking had changed and action would only be considered after reaching around 9cm. What a relief.

My next check-up scan is in a years time.

Of course I wish I knew why these things grow but there we are.

Take care everyone.

Hi P02,

A very warm welcome to our forum and thank you for sharing your story.

I am so glad to hear that you followed your own gut feelings amd that you discovered an AML instead of a cancerous lesion. Cancer protocols are changing all the time, so it is good to hear that, despite the increase in size, there was no need for surgery yet.

Here's hoping that all goes well for your next check-up. Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hello Jolamine,

Thank you for your kind reply. Much appreciated.

It does make a difference, as it is sometimes difficult to talk to those around you.

Keep up the good work.

Until next time.................

Hi sorry to hear about your alm can I ask what anti acids this was please 

Hi, it was Gaviscon, but note I went from taking none to 6-8 a day every day for a month!! 

An update on my situation: a few months ago now I had a follow-up appointment with consultant to discuss the situation. He showed me the initial scan which showed what he called 'a significant bleed'. It was his opinion that the amount of scar tissue as a result of the rupture would likely a) prevent further growth b) prevent a further rupture and c) hamper embolization if this were at all a possibility.  The radiographer had said the latter was not possible but a further consultation would be sought from a specialist radiographer. Received this in due course - they suggested embolization would in fact be possible, I declined, my consultant said it was by no means certain that once in there it could be achieved! I would also need another angio scan prior to further discussion before the procedure.  I asked what the scenario would be if I started getting pain I couldn't live with, could the alm be removed as previously suggested - his opinion was that the scar tissue would make that very unlikely and as such I would probably lose the kidney.

He seemed to think my decision on leaving it alone was the right call, while I was having no issues at all.

I changed my diet radically to live medicine free with silent reflux and to prevent or heal the damage to my throat which I have achieved so far and I now dare to take the odd Gaviscon (as in 1 tablet twice a month, if that). It was a very scary episode and this site and everyone sharing has helped me heal and make necessary decisions.

Thank you all

Stay well everyone.....

I will have another scan next month

Hi, it was Gaviscon, but note I went from taking none to 6-8 a day every day for a month!! 

An update on my situation: a few months ago now I had a follow-up appointment with consultant to discuss the situation. He showed me the initial scan which showed what he called 'a significant bleed'. It was his opinion that the amount of scar tissue as a result of the rupture would likely a) prevent further growth b) prevent a further rupture and c) hamper embolization if this were at all a possibility.  The radiographer had said the latter was not possible but a further consultation would be sought from a specialist radiographer. Received this in due course - they suggested embolization would in fact be possible, I declined, my consultant said it was by no means certain that once in there it could be achieved! I would also need another angio scan prior to further discussion before the procedure.  I asked what the scenario would be if I started getting pain I couldn't live with, could the alm be removed as previously suggested - his opinion was that the scar tissue would make that very unlikely and as such I would probably lose the kidney.

He seemed to think my decision on leaving it alone was the right call, while I was having no issues at all.

I changed my diet radically to live medicine free with silent reflux and to prevent or heal the damage to my throat which I have achieved so far and I now dare to take the odd Gaviscon (as in 1 tablet twice a month, if that). It was a very scary episode and this site and everyone sharing has helped me heal and make necessary decisions.

Thank you all

Stay well everyone.....

I will have another scan next month