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 All,

I am so glad to have found this forum.  I would love if there was a forum especially for those with angiomyolipoma(s) – I cannot find one online.

So, I was diagnosed with an angiomyolipoma last December (2019) at that stage, it measured 2.9cm – fairly conservative (I think).  Went back for my ultrasound this year and was told on the day that it was 3.1cm – I thought it was a little more growth that I had hoped(I prayed that it would stay the same or disappear – which wasn’t going to happen).

Then, I got a letter from my consultant on Thursday to say it now measures 3.4cmx3.5cm.  I am suitable for surveillance and will be called back for another ultrasound next December (2021).  At that rate of growth, surely it will be over 4cm by then?  Is it when they are 4cm+ that they operate?  I get flank pain often and control it with uddermint and ice. 

Is there anything I should or shouldn’t do?  Eat or shouldn’t eat? Should I be in work?

I am awaiting a virtual appointment to discuss all with the consultant – just wondering if any of you have had similar experience and when interventions happen.

Thanks so much. :happy:

Hi Megs,

Welcome to our forum. I am a breast cancer lady and don't know a lot about angiomyolipoma. I notice that you are expecting a call from your consultant . You will find it helpful to draw up a list of questions prior to your virtual consultation, as it is too easy to forget important questions in the heat of the moment.

If you want to hear from others with this condition, why not go to the search bar on the blue banner at the top of this page, insert angiomyolipoma and this will bring up previous psts on this subject.

Do please keep in touch, as there is always someone here for you.

Kind regards,

Jolamine xx

Hi Jolamine,

I think I maybe posted it in two different places on here.

Thanks so much, I am going to write out a little list now - like you said - sometimes it is hard to recall everything.

My angiomyolipoma is a benign tumour and I feel bad for posting on here but there is literally no other forum.

I will keep you in my prayers for all your treatment.

Megs.x

Hi Megs,

Don't worry about posting here. There are a number of people on the site who have angiomyolipoma. As you say, it is fortunately a benign lesion and it is normal just to have follow up checks on this.

Have you got an appointment through for your virtual consultation? Please let us know how it goes and remember, that we are always here for you

Kindest regards,

Jolamine xx

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

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.  

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