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 :)

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 I am new here I have kidney angiomyolipoma 9cm doctor recommended embolization would be tge best option rather than removing my whole kidney. I'm going holiday in April for 3 weeks does anyone think it's safe to go.my kidney function is 61 please help as I'm worried I do get pain at tge side and back sometimes 

Hi Kushidali,

A very warm welcome to our forum. The best person to answer your question is your consultant. S/he will have all your medical records and should be able to say whether or not this is a good idea.

Please keep in touch and let us know what s/he says. We are always here for you.

Kind regards,
Jolamine xx

I have also been diagnosed  qith an angiomyolipoma 4mm x 3.5 I'm having severe groin pain they were checking foe endrometial  cancer which I've had biopsies  for But this pain is what is really bothering  me its there 24 7 I've got dr appointment on Wednesday  is there anything I need to ask.They say suggestive  angiomyolipoma  on the ultrasound  and so a follow  up on 12 weeks but I can't live with this constant  pain for 12 weeks I'm a 69 yr old lady can anyone tell.me what to Ask  dr for next steps 

Hi MC1,

I am sorry to hear that you are undergoing tests for this too. Have you been given any medication for the pain? When you see your GP on Wednesday make sure that you tell him that you can't cope with this constant pain for another 12 weeks and ask for something to ease it. You could also ask if there is anything you can do to change your diet, which might help.

I don't know a lot about this condition, so cannot suggest any other salient points to discuss. If you want to know more, why not phone one of the nurses on this site? They are available from Monday - Friday, 9.00am - 5.00pm. Their number is 0808 800 4040 or you can email them.

Have you had the results of your biopsies yet? Please keep in touch and let us know how you get on. As you know, we are always here for you.

Kind regards,

Jolamine xx

I have this on top of having biopsies  for suspected  endrometial  cancer so I am going drs to have a word with him I've also got a small hernia but it needs sorting g I'm really down in pain and crying a lot I'm just hoping the biops results off my womb come back quickly so that will take a lot of worry off mu mind 

No it was a week on Saturday  the biopsies were done they said about 2 weeks I just want some peace of mind 

Hi MC1,

Crying a lot is something that most of us do, whilst we're waiting for biopsy results. This is a very stressful time and crying is a release valve, so it's not such a bad thing. Your results should be back shortly. Regardless of what the outcome is, you'll feel better once you know - we all do. 

Please keep in touch and let us know how you get on. 

Kind regards,

Jolamine xx

Hi MC1,

Crying a lot is something that most of us do, whilst we're waiting for biopsy results. This is a very stressful time and crying is a release valve, so it's not such a bad thing. Your results should be back shortly. Regardless of what the outcome is, you'll feel better once you know - we all do. 

Please keep in touch and let us know how you get on. 

Kind regards,

Jolamine xx