Hi annie456

So sorry to hear you are having issues with this.  My urologist said that bleeds are rare and the last one he saw was some 2 years ago (in people who don't have TS  or any other condition).  I am waiting for an ultrasound (next week) as the blood around the kidney needed to disperse first for a clear picture, but I have been feeling much better and have started doing a bit more than just reading!! I have started to experience a little discomfort again these last 3 days and obviously I am worried of another bleed and the whole embolization thing (not good with needles/hospitals etc) and I have tried to find out as much as possible.  My findings are that tumours over 4cm start to give us grief - did they say how big yours was?  I don't quite understand why they haven't taken yours out with the issues you're having...? Every heamorrhage is a rush to hospital isn't it? Do you have to take it easy? How is it affecting your life?

Best wishes

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 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