Hi Maz,

A very warm welcome to our forum. I am sorry to hear about the problems you've had with your kidneys. I am a breast cancer lassie, but you may find it useful to go to the blue banner at the top of this page. Click on search and insert AML into the search box, then click. This will bring you to previous posts on the topic which you might find helpful.

I am so glad to hear that you have managed to have a healthy baby boy, despite your problems. Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hey I've just been diagnosed with this and suffer real bad with anxiety. Was wondering if you had found out more or if being treated as I'm really worried about it. Especially after reading up about haemorrhage. 

Thanks  

Hi DiiOnne,

Welcome to our forum. I am so sorry to hear that you have AML too. Doctors have to tell you about all side-effects of surgery, even though it doesn't often happen. What stage are you at with this? Are you going to have any surgery or treatment, or is it just a case of monitoring you?

Kind regards,

Jolamine xx

Hi everyone 

I'm 27 and was told last Friday I have a cyst on my left kidney and a 5mm angiomyolipoma on my right kidney. 

I had an ultrasound for something else and it was an incidental find. My doctor is seeking advice from a urologist about whether I should have an MRI scan. 
 

Should I be worried? I've read that AML is benign but how do they know that the cyst on the other kidney isn't cancerous? I'm worried they won't approve the MRI as the AML is only 5mm but seems I'm fairly young to have this and I do get dull pain in my upper abdomen and find it hard sitting in a comfortable position sometimes. 
 

Have found this thread really comforting to read to see everyone's journey. Did anyone push the doctor for an MRI to make sure all was ok? Did anyone else also have cysts along with AMLs? I can't stop googling xx

Hi Haz,

Welcome to our forum.  I am not a doctor, just a breast cancer pilgrim, but from what I've read AML is normally benign, although like cysts, patients are usually monitored for any change. It sounds as if your GP is doing the right thing in consulting an urologist for advice. It is hard to say what will be done because of the current pandemic. Many hospitals are not carrying out scans at present, as these are being reserved for Covid patients.

I am glad to hear that you have got some comfort from this site. However, this is something that you won't get from Dr Google. I know that it is tempting, but try to steer clear of Google, as this will naturally lead you to all sorts of nasty outcomes. If you want to find out more about AML, go to the blue banner at the top of this page and click on the search engine. Insert AML and click again. This will bring you to posts from other people who have AML, which I hope you will find reassuring.

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

Kind regards,

Jolamine xx

Hi Jolamine 

Thank you for your lovely message. I definitely need to avoid google but it is so hard when you are waiting to hear back from the doctors because I feel so curious and anxious. 
 

I'm hoping they will approve me for a scan but perhaps in a few months once the number of covid cases hopefully decreases and they are able to do routine checks again (it's such a scary time with the pandemic).

If I don't hear back in 4 weeks then I have to follow it up, so I'll let you know how I get on. Thanks again for your advice and stay safe xx

Hi Haz,

Having had 2 bouts of breast cancer in the past 11 years, I am only too aware of how tempting it is to research everything, no matter how vaguely connected, but Google is never good news. Much of the information is inaccurate, out of date and aimed at the spectacular cases, which only serves to scare us further.

I sincerely hope that you will be approved for an MRI. I'm sure that there won't be any problem if it has to be delayed for a few months until all this hype dies down. It is good that you have been advised to follow it up if you haven't heard anything within 4 weeks. It is not unusual for patients to slip through the net, especially with all that is happening just now. However, this gives you the ideal opportunity to chase it up if this does happen.

I hope that all goes well for you and I look forward to hearing from you.

Kind regards,

Jolamine xx

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 had a large AML in 2015in my right kidney  had three embolizations over tweleve months it has shrunk but my scan today showed it had grown a bit a small one lower down hasnt changed but I have one now ih the left kidney please take it seriously mine started to heamorage take care