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 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!

I also have a flank pain. I went to A&E in 2017 because I had this pain for a long time and when I started vomiting I decided to check it. Back then I was living in Poland. The did the scan and found AML in left kidney 10 mm. I was 28 back then and it was my first renal tract scan. I was told it is not serious and that I should check it once a year, if it grows then every 6 months. I decided to see private consultant - specialist to confirm that. He did the scan and referred me urgently to do CT. I had this done within not even an hour. A few days later they gave me results confirming AML. I was asvised to check it once a year, which I did. Each scan so far showed different measurements: 10 mm, 11 per 7 mm, and the latest 10 per 8 mm. The last one was done in the UK as I moved here. And a few days ago I got a text message from my GP to book an appointment and discuss further steps. As she wasn't sure how often I should have a scan. Most of consultants ignore the fact that I can feel the pain on my left side, some say it is impossible. I found it interesting that some of you had this after pregnancy, as I read that pregnant women are at risk as AML can grow faster during pregnancy and it can start bleeding. I personally don't have kids. But I would like to know how big is the trisk.

Oh dear, I am clearly not the only one doing the Google thing! It has been a comfort to read everyone's story so I am adding mine in case it helps someone as I think we are all trying to find scenarios that match our own.....

I got up one morning, had a cup of tea felt a spreading pain in my left flank. It wasn't easing so I went 7 sat on bed in my cosy room. The pain steadily grew worse & when my husband came in it was getting decidedly worse. My pain tolerance is pretty high, I rarely take meds, but I started go cry, then went on to the floor, hubby said he was calling someone, started to feel sick, crawled to bathroom & collapsed. Paramedic was there within 10 mins, ambulance 10mins after. Pain still bad but easing while I was doubled up on stretcher. Initial thoughts were kidney stones. Had to wait for scan next day and you guessed it, no stones or debris. Had to go for dye scan later in day & you guessed it, an ALM 2.5cm which had ruptured and bled around outside of kidney.  There were multiple talks between CT doctors & urologists and they agreed that the rupture had plugged itself. I was uncomfortable but not in distress but was kept in for monitoring in case of a)further bleed b)infection. They were fairly happy by the afternoon of 3rd day & let me home. I need an ultrasound in 2 weeks when blood has dispersed and was told that if they feel I need anything else doing I will be called in mean time.

I am 54 and prior to this had the occassional very very mild fleeting discomfort in that place.

While coincidences in life exist I am going to mention that 4 weeks prior to this I began taking high doses of a popular antacid on a daily basis for another issue. I was not happy doing this but due to pandemic NHS couldn't provide alternative. These meds are primarily made up of salt. Just in case someone out there has the same 'coincidence' because only if there are more will it be considered for research. 

Stay safe everyone.

I stumbled on this post when I was googling why do I have kidney pain from my angiomyolipoma. I was scanned last year because I had blood results that indicated a problem with my liver but instead they found that I have an AML which is 7cm x10 cm on my right kidney. They tried embolisation up through the groin to try and cut off the blood supply but discovered it has numerous blood supplies so I have just had another ct  scan to see if it had grown anymore and will be either having it removed by open surgery or the whole kidney will be removed ! This is going to happen in the next few months. I didn't have pain from it but recently I've had a lot of pain . The consultant said they're not usually painful but I'm a bit worried as it's so big and risk of bleeding etc. 

Hi ali64

Welcome to the AML club thank you for sharing with us and what a bummer you are in such discomfort. It got quite big before it was discovered! Hope you get sorted soon during this difficult time.. my latest ultrasound showed I still had 2mm ring of blood around kidney plus a pool of it nearby from bleeding out. I was told in hospital that blood sitting in places it shouldn't ran a high risk of infection. They suggested it would clear over about 2 weeks but scan was at 4 weeks so still there and get a bit of discomfort at times but not like the discomfort months before it sprung a leak. I do wonder if that low pain is because it was growing but who knows! They keep telling me it's benign (had mastectomy 4 years ago).

Please stay in touch - it is really helpful for others as there doesn't seem to be a lot of real people's voices on this subject and hopefully supports you too with feeling you're not alone.

Take care, stay safe

Hi I was wondering if anyone has any experience of follow up checks or monitoring after an AML has been removed?  I had one removed a few years ago and have annual blood tests to check kidney function but have never been monitored for a recurrence and wonder if this is normal?  

Many thanks in advance,

Hi

I had a large renal angiomyolipoma embolised in January this year.  I had a follow up CT in April to check if it had shrunk ( it had by 1 cm) and I also had kidney function tests.  I am scheduled for another CT in April 2021 and further kidney function tests.  Hope this helps.

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 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 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