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 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 when you had embolization of aml did your doctor say you may lose your kidney,because my doctor is saying I might lose my kidney that's the risk for embolization 

Hi I have now decided to go ahead with embolization of my 10cm aml in my kidney but doctors r freaking me out when they saying i may ultimately lose my whole kidney that's the risks they saying I really don't know what to do  they also have slight argument leaving it alone and monitoring  please can anyone let me know what to do did anyone list their kidney while they had embolization 

Hi everyone 

I have alm in my right kidney which measures 9.5cm and its right in the middle of my kidney, doctors are advising the embolization will not work because it's in the centre,  so they saying to remove  the whole kidney,  I'm soo much worried to death about the removal of my kidney, because the left kidney might function less in the future, because I have high blood pressure,  I'm 47 years old , and over weight, got high cholesterol, please can someone advice me I'm gonna have another oppointment in one month time, 

First doctor gave me an option either keep it alone and we will keep an eye on it .or remove the whole kidney, so I said OK just keep it and yiu can keep an eye on it. Soon as I said that he replied if it hemorrhage you might die, it freaked me out,  and it's only 2/3 percent. He also mentioned the risk factors of having to live with one kidney too as I mentioned above that I have these conditions. Please please can someone help me to decide thanks 

Hi Trish7370

Sorry to bother you  I also have 9.5cm alm in my kidney as they can't embolization because its in the middle, and it's the right kidney they also recommend me to remove it ,I'm too scared what if my left kidney have its function decrease and then I will be in dialysis,  I have high blood pressure, and over weight high cholesterol please can you kindly advise me life with only one kidney my age is also 47 thanks alot 

Hi jolamine have you done your embolization of your 10cm aml is your kidney O k please let me know they also said that to me too 

I am in a very similar position to most.

started with regular uti every month, have been told there’s a AML, no size has been given yet as I only had ct scan a few days ago, my main concern is I have suffered with back pain and spasms for 7/8 years and still do, this is now concerning me, also the pain is so severe on the week that I have my period, Does anyone know why this is?? I am 49 years old.

Good luck everyone x

I am in a very similar position to most.

started with regular uti every month, have been told there’s a AML, no size has been given yet as I only had ct scan a few days ago, my main concern is I have suffered with back pain and spasms for 7/8 years and still do, this is now concerning me, also the pain is so severe on the week that I have my period, Does anyone know why this is?? I am 49 years old.

Good luck everyone x