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 MummyPetal,

Welcome to our forum.

I am not a doctor and do not have AML.I am a breast cancer lady.

If you have not been scanned since May, 2018 and are still having symptoms, I would certainly push for a follow up. In fact, I am surprised that you haven't been given an annual follow-up. Ask whether or not this is necessary at your next appointment.

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

Kind regards,

Jolamine xx

Kind regards,

Jolamine xx

Hi  A few months after I give birth at the age of 35 I had a renal colic and went to A&E. I was told I had kidney stones which I ignored. In 2017 I had a CT scan following a recurrent UTI  and some back pain. I found out it wasn’t stons It was a different kidney problem, right side 5.4 cm AML and left side  11 mm AML. Neither has changed in size since 2013. This was confirmed when I had my scan in 2019. I have had my kidney function monitored regularly and this year I was offered a  treatment (embolisation). However, as I wasn’t in pain and the procedure has risks the consultant decided not to perform the procedure. He has told me to come back if it becomes painful again. Otherwise, he intends to see me again in 2 years. I am now thinking about 
percutaneous radiofrequency ablation as I started getting  back pain again. This procedure seems to have less risks for the kidney. 
I must to admit that I have always been slim and had a unhealthy diet, although I have always exercised eg. lifting weights, running. I have managed this even after I found out about my AML in  2017 

Hiya,

I was told I had a hernia for almost 2 years. Pain was coming and going but it has become more consistent so I took myself off to the GP again in late October - early November. I met with another GP who done full bloods (they were fine), but also referred me for an ultrasound. 

The ulstrasound results came back "possible stones'.....I was further sent for a CT contrast scan and have recently received a letter to say it is most likely an angiomyolipoma. The tumour measures 29mm, The MDT will look at my scans and then I will see the consultant after that. 

It is all so worrying. But, yes, I have pain from under my ribs on my left to lower left abdomen. 

Hope you feel better soon. 

Megs

Hi

I am a 31 female and I was diagnosed with a 1.8cm AML in November as I went to A&E as they suspected kidney stones. No stones but an AML. 

I have been experiencing left back pain for 2 years and then since October I starting getting abdominal pain. The pain is mainly dull but it is also sharp at times. I have seen a consultant but waiting for a CT with contrast to see what to do next. The consultant said he is surprised that an AML of that size would cause as much pain as it is but there's no other explanation for this pain. I'm hoping to get it embolized or removed to help with this pain. 

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!

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.

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.

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