Hi Megs

I agree it does seem odd to post on cancer site when AMLs are benign and it did worry me!!

I have a couple of earlier posts; my story began in September when my AML haemorrhaged.  I had 2 CT scans as an in patient (the bleed had stopped on its own), an ultrasound 4 weeks later and last week an MRI (awaiting result). The ultrasound suggested it was 3cm. The consultant told me they would have to look at removal if it got to 5cm as this is often when issues start to arise.  Hope this helps & I'll post result of MRI when I get it....fingers crossed!!

Hi Megs41

I had flank pain also and blood in my urine - this can indicate that the tumour is bleeding and at higher risk of rupture/aneurysm.  They monitor if the tumour is over a certain size and are more likely to intervene surgically if you are symptomatic. The surgery is an embolisation and you are awake throughout.  I had this surgery in January and had a follow up CT in April showing 1cm shrinkage.  While I was waiting on surgery I had to be careful to avoid any trauma/injury to my back and abdomen that could've caused the tumour to bleed or rupture as this can be very serious and a medical emergency.  I still have flank pain following the procedure but its a trade off. Hope this helps.

Thanks so much for your response.

I am glad your pain has improved. Were you in pain for many months prior to surgery and was surgery painful/long recovery? Great too that your tumour has reduced in size.

May you continue to enjoy good health.x

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

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