Hi Maezy,

I am so sorry to hear that you are having so much pain with your AML. I hope that your CT will signal the best way forward for you.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi everyone,

I am a 24 year old female and have been experiencing bladder problems for the past 9 months or so.

I had an ultrasound last week and the report identified a tumour in my right kidney measuring 2.1cmx2.4cm. The doctors believe it’s suggestive of an Angiomyolipoma so I  am being referred for a CT scan with contrast. 

I also experience back pain on my right side and at night, a sharp stabbing pain. My concern is that the ultrasound cannot solely identify the tumour as an Angiomyolipoma and I have to wait 4-6 weeks for a CT scan. 

Did anyone get a different diagnosis once they had the CT scan and what was the outcome?

I’m very nervous and stressed since discovering this, especially as it is uncommon at my age. 

HI Lyd,

A very warm welcome to the forum that nobody wants to join. I am so sorry to hear of the problems you've been having and the result of your ultrasound. Sometimes certain scans do not give a clear enough view to either deny or confirm a particular type of cancer.

I agree that the longer you have to wait for additional tests the more scary your wait becomes. 4-6 weeks is not too bad a wait for a CT scan - I have been waiting 12 weeks for a brain scan.  Yes people have had a different diagnosis once they have other scans or tests. Sometimes it is better and others it is worse.

You are young to get hit with this and, I sincerely hope that your CT doesn't find anything untoward.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hello ladies!

I wish I found this sooner, instead of reading all the scientific / horrible things!! I am 29 years old and have been aware of my AML for a year and a bit now.

I had reoccuring UTIs for almost two years before they sent me for an ultrasound. At first they thought it was growing super rapidly so they did a biopsy but luckily it came back benign, and it was because ultrasounds are blurry and not so precise. They did two CTs a little over 6 months apart to confirm it wasn't growing so fast - lyd_18 so that definitely helped! It is a little bit over 4cm, and to the lady that said she read online that they operate at 4 - that's apparently old science, I confirmed with multiple doctors they don't  look at size anymore but at symptoms. They let me wait so long for the results (a month plus) that a nurse took pity on me and read me the results which stated I had a rare type of pre-cancer cells! But I later found out that they sent my sample off to the specialists who said that is not the case, and that's why my results took so long. Hope they're right LOL Also note to self, if someone asks you do you want your results now on the phone, say No! 

I am now supposed to do MRIs bi-annually (cause less radiation). I haven't had any UTIs recently but I do get sharp stabbing pains that I just hope don't mean it's bleeding!! The way my AML has chosen to grow is through the kidney (which is why they also thought cancer because typical AMLs don't grow through the kidney) so if it will need to be removed they will take out my whole left kidney. I am not afraid anymore, as I know you can have a very full life with just one kidney, but you have to take super good care of yourself.

One thing that I don't think was mentioned here is that AMLs feed on estrogen, so if you get pregnant it can grow, and that's why it's often discovered during ultrasounds of pregnant women supposedly. I am planning on starting a family with my partner in a few years, so that is a bit of a concern for me. 

But all in all we are so lucky to have benign growths instead of cancerous so it is unpleasant but the best thing we can do is to NOT STRESS and LIVE WELL! This is my second time lucky, I had a benign tumour removed from my lung when I was 24 and I remember the doctor saying that as women of childbearing age we are capable of creating new life, so sometimes we create some unnecessary blobs too. I quite like that way of looking at it, we are magic creatures / creatrixes!! 

I hope someone finds this useful : ) 

Sending love and good wishes,

Hello all, so glad to find this forum. I had gone to see my GP for  routine check-up two months ago. My doctor took a urine sample and said that it showed microscopic hematuria and requested me to drop off another sample after a week which I did. The sample proved the same  and my GP referred me for a Cystoscopy at the hospital. Fortunately all was clear and nothing malignant was found. However my urine sample had blood in it which was invisible to the eye. I was then referred for a CAT scan with contrast which was a huge relief. I waited for 4 weeks for my results as I was under the impression that they would be sent to my GP which was not the case. I called up the clinic and requested for the GP to call me as I was concerned that I still had no diagnosis/results. 

Today morning I received a call from the clinic. The GP said that the good news was that there were no signs of cancer. However there were a couple of cysts on both kidneys (common and not a concern-his words). However there was a lesion on one of the kidneys, he gave me the size but I didn't note it down as I was overwhelmed. He referred to it as an Angiomyoplipoma. He also asked me to call the hospitals Urology department and ask to see the doctor who had the reports! i have been googling like mad, panicked and got a bit upset. I have also been diagnosed with  a cholesterol ganuloma at the base of my skull which is benign but needs to be taken out as the bigger it grows the more problems it will give me in terms of hearing loss, facial paralysis, diplopia :-(. I will be having the granuloma operated on sometime this year , I am on a waiting list and was told that it could take 8-9 months. Back to the Angiomyolipoma, I an having mild soreness on the left side of my back which is more like an ache. I have been reading quite a bit about it (Google-what else:-) ) and found that Melania Trump had the same condition and was operated on . She was in the hospital for five or so days but has made a full recovery. We commoners obviously have to wait it out for tests and procedures. The good thing is that it's benign but it is worrisome that it can grow and cause issues. The other concern is that the doctors suggest annual scans etc-my question is -how do I know tht it hasn't grown larger in that period  and has caused other issues in the process?? I will keep you all updated as I am going to call up the consultants secretary to book myself in if that is possible!

Hiya.. yes.. I also have an AML.. 

it causes me no bother and was found by accident during a scan for something else.

I have six monthly bloods done to check my renals are good, growth of these AMLs are considered slow.. 

do not worry .. your gunna be absolutely fine.

Hi Barbeara,

Welcome to our forum. I am sorry to hear about your AML, but glad to hear that you found it early on by chance and, are being checked out regularly.

I hope that all continues to go well for you.

Kind regards,

Jolamine xx

Angiomyolipoma

Hello i am a 50 year old female and had major surgery on my left kidney 13 years ago. I collapsed im my kitchen and was taken to hospital for tests, i soon discovered that i had 4 growths on my kidney called angiomyolipomas and the biggest one was 10cm in size and there was a possibility that i could hemorrage if it burst so i had surgery to remove them and now have only a quarter of a kidney on my left.

I have regular mri scans as i have them on my other kidney and after a check up today i now know i still have small growths on my left.

I live a healthy life and still work full time as they cannot do any thing now untill these growths reach a certain size,hope this has helped.

Hi Paulajane,

Welcome to our forum. Thank you for telling us your story. It is always reassuring to hear how others are coping with AML. It is so good to hear that you are working full time. I am sure that this has been a great help to others who are at an earlier stage of AML.

I sincerely hope that you continue to avoid any more surgery.

Kind regards,

Jolamine xx