angiomyolipoma
Posted , 7 users are following.
Hi there!
I was diagnosed with a 4.6 bi-lobed tumour on my left kidney at the end February 2018 -- a few weeks ago. It was discovered by CT scan whilst looking for colon cancer.
The bi-lobed tumour was thought to be a renal cell carcinoma-- renal cancer.
It was growing right through the middle of my kidney and out of the top, and because of the position of tumour and its size, I was advised that the only safe treatment was a total radical nephrectomy -- to have my whole left kidney removed.
I was and still am very upset about the loss of my precious left kidney, but relieved that this potentially dangerous tumour is out.( I am using homeopathic remedies for feeling violated, anger and grief at due to the surgery, as well as homeopathic remedies for post -srgery recovery -- which are really helping me.)
I had the radical nephrectomy on 27th March -- still described as an RCC -- at the Churchill Hospital in Oxford (specialist cancer hospital).
The histology report shows that my tumour was in fact an Angiomyolipoma -- and not cancer at all. Whilst it's a relief not to have cancer, I am aware that these so called benign tumours can also be fatal if they cause the kidney to rupture. I am concerned that I will develop another angiomyolipoma on either my only remaining kidney or on another organ.
Has anyone here had this happen -- a second angiomyolipoma develop if they are not a Tuberous Sclerosis patient?
I understand that these tumours are cause by a mutation in the TSC2 gene. I am assured by my consultant that I do not have TUBEROUS SCLEROSIS (TS). However, this gene mutation can cause angiomyolipomas to occur in my other precious kidney, or on another organ.
What has other people's experience been? I'm terrified that I will develop another angiomyolipoma, and that it won't be discovered early enough to avoid loosing my other precious kidney.
Has anyone had this happen to them? Does anyone know the statistics on the chances of developing a second or more angiomyolipma tumours for non TS patients?
Thanks for your help!
Debra (Oxfordshire Cotswolds, England).
0 likes, 10 replies
janet89368 debra09429
Posted
Hello Debra
Sorry to hear about your experience and that you had to have a kidney removed. Hope you are recovering well. I don't have TB (or at least nobody has looked into that possibility) but I do have an angiomyolipoma on both kidneys. The first one was diagnosed on the lower left pole of my left kidney in 2008 I think and is now nearing 4cm in size. The second one was diagnosed a couple of years ago and is very small at present but is in the middle of my right kidney. The goalposts seem to have been changed re treatment as they said when they get to 4cms they become unpredictable so have to be monitored at regular intervals which was annually at first but is now bi-annually - so much for regular monitoring! Also, they've moved the goalposts re size. Now they are saying if they get to 5cms they will have to do something as they can rupture, which would be a life threatening situation - at first they said 4cms would prompt treatment. No idea what they will do and worry in case they become malignant. If you wish to discuss anything further or keep in touch re what they tell me, my email is.. I hope you make a good recovery. It is a great worry when both kidneys are affected.
Best wishes.
Janet
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debra09429 janet89368
Posted
Hi Janet,
Hi Janet,
Thank you so much for your reply --(which I see you posted soon after I posted mine, but has only just come thru to me.)
I'm really sorry to hear about your situation -- yes, it must be very scary to have a tumour on both kidneys, however small the growths might be at the moment.
It is my greatest fear that I now develop another angiomyolipoma on my right kidney. I've been told " You don't need monitoring", because my tumour was not cancer, but I think I absolutely need monitoring. Now that I've had this info from you that angios can develop on both kidneys, I think the hospital have no excuse not to monitor me for the rest of my life.
I assume you are, like me, in the UK -- am I right? Where do you live, and which hospital cares for you? Has your consultant suggested testing you for Tuberous Sclerosis? I was told I don't have it -- but I'm not sure on what grounds. I don't even know what the test for TS might be -- do you? I assume its a genetic test.
My understanding is that angiomyolipmas occur because there is a fault in the gene TSC2 that codes for cell reproduction. That faulty gene then produces too many cells, which become an angiomyolipoma. So wether we have TS or not, this is genetic fault, which means that removing one tumour does not prevent others growing. It also means that there's nothing we can do about it.
As your larger tumour is on the lower part of your left kidney and is not growing thru the middle of the kidney, it may be that the tumour can be surgically removed or ablated without removing your kidney. Or you may need a partial nephrectomy ( part of kidney removed to get all the tumour out). I was told they become dangerous at 5cm -- can rupture the kidney -- which is why mine was surgically removed. With the smaller one, I was told small tumours can be ablated. Maybe you can ask all this of your consultant.
Are you monitored with ultrasound or CT scans? I assume ultrasound because its safer and cheaper.
If so, if you feel you need more frequent checks, then a private ultrasound costs about £230.00 -- I don't know if that sounds affordable to you. I had a private ultrasound at the London Ultrasound Clinic on Harley Street in Feb this year because originally my GP thought I had ovarian cancer. I wasn't prepared to wait 3 weeks for an NHS scan, not knowing if I had advanced ovarian cancer or not.
Having a kidney scan at the London Clinic may be the same price or less -- I will be enquiring because i will be having regular scans there if the NHS now abandon me.
In terms of your angio becoming malignant-- there's lots you do that to protect yourself from having cancer. Do you know www.cancertutor website? It has loads of info about how to protect yourself from cancer -- I have been doing many of these things for years. My mother died of kidney cancer, and my father is dying cancer --
has been given only weeks to live -- as I write, so I have lots reasons to fear cancer.
Angiomyolipoma is described as a benign tumour -- but what's benign about something that still kill? I'm very angry about this. If my tumour had been a carcinoma I would be monitored forever, but because its not, apparently , monitoring isn't necessary, although another angiomyolipoma could kill me. It's bizarre.
I would love to stay in touch with you and see how things progress for you. As you can see, you personal email has been removed, so we can go thru the site of that's the only way.
I look forward to hearing from you when you've got a minute. Do let me know where eye are and wha hospital your under. Art from anything else, I will challenge my consultant as to why he is not prepared to offer me regret monitoring of my healthy kidney, but your hospital are offering you for the same condition.
I'm so glad you contacted me, Janet!
All the best,
Debra
janet89368 debra09429
Posted
Hi Debra, the docs don't tell you very much about angiomyolipomas because I think they are only now seeing them more regularly when people have a CT for other reasons. I have an annual ultrasound and it used to be followed up by meeting with a doc or my Consultant to discuss the results. That, too, changed this year when I didn't even get a follow up meeting! NHS must be really struggling if they can't give us the service we need. And now I am on bi-annual checks. I think it is all to do with saving money and I worry that when the times comes they say I am too old for treatment as I will be 70 this year. I had breast cancer in 2001 and my mother and sister also had it. I eat a good healthy diet and do my best to keep well. I hope the NHS will do the same for me when I need them. If there are any developments or I learn anything new about angiomyolipomas I will post on here. At present, I think they are likely to offer embolisation when the time is right. One can have that done twice and then it might be kidney out if it doesn't stop the tumour growing. Best wishes. Janet
caroline_81907 debra09429
Posted
Hi, hope you're well now, I got diagnosed by ultrasound that I have 12mm angiomyolipoma I have been so worried, been to see my consultant and he said to watch and wait and scanning me again in January, I'm not happy with that but can't do anything, I was concerned if it could turn Cancer, do u know much about them? Thanks x
debra09429 caroline_81907
Posted
Hi Caroline,
Apologies for taking a while to get back to you -- my email has not been working properly so I've been delayed with replying to you.
Angiomyolipoma (AML) can become cancer -- but so can any organ in the body. As far as I know the risk of AML becoming a carcinoma is very small.
As I understand it, there's not a lot of research about AML and cancer because AML itself is rare -- less than 1% of all kidney tumours. It's even rarer for them become a carcinoma. As you are being monitored, there's a good chance any cancer cells would be spotted.
There is is also lots you can do to protect yourself from kidney cancer. Drink 3-4 cups pure water everyday, as this cleanses your kidneys.( I drink hot water-- like tea but without the tea or milk!! -- it's very warming and soothing). I also drink herbal teas, like nettle, peppermint and dandelion which are cleansing. Follow all the guide lines for protecting yourself from cancer -- eating a diet that's right for you, cutting out sugar and eating only healthy fats, exercising etc. I'm a fan of Dr Budwig's Anti-cancer Diet, (which you can google, to look her up on the Cancer Tutor website.)
Also, those of us with Kidney issues need to avoid certain pharmaceuticals -- especially common pain killers, like Ibruprofen and Aspirin. Paracetamol is marginally safer for us. The Kidney Research website has info about all this.
As it's our kidneys that are vulnerable -- and because I now only have one kidney, and a history of kidney cancer in my family -- I don't drink alcohol at all as a way of protecting my kidney and liver. New research published yesterday had national publicity -- alcohol is a risk factor for all cancers, but kidney and liver, which are the body's detox organs -- are more at risk from alcohol. ( I have actually never been a drinker, so not drinking is not new for me and this latest research just confirms what I always thought.)
As I understand it the major risk with AML is that can bleed once they are above 5mm -- which yours obviously is. Very bizarrely, I have a friend, (who lives in Greece) who had an AML of 9mm which was discovered when she was in acute pain, as it had stared to bleed. Maybe that's how yours was discovered.
My friend had a partial nephrectomy -- which I'm envious of -- and I was never offered because of the position of the AML in my kidney, which made a partial nephrectomy impossible in my case.
If your AML is not causing you pain, I would get more than one opinion, (which you are entitled to do under the NHS), about what to do. If it's not causing you problems, and you do not have a history cancer in you family, and you look after yourself to protect your self from cancer -- maybe just live with the AML. It's benign.
I've not felt any better in any way since having my AML and my whole kidney removed. It was major surgery, very traumatic for the body, recovery was 8 weeks, and I'm now without a kidney. I feel very vulnerable with only one kidney -- (I have other health problems as well).
Do not rush into a nephrectomy. Mine was rushed because it was thought to be cancer and because it was pushing up against my pancreas. My mother died of kidney cancer, and both her parents died of cancers, (not detected as kidney) -- so I'm at a higher risk of cancer. If your AML is not in the middle of your kidney and a partial nephrectomy is possible, I would choose that, but only if you feel you must have the AML removed.
Although it may feel scary to have a tumour inside you, if its benign, as AML is, and its not causing you pain or problems, I would go with being monitored. I can assure you that having a vital organ like a kidney removed doesn't feel great either.
I hope that helps.
all the best,
Debra
Lu2299 debra09429
Posted
Hi, This is my first time posting on here..
Im not sure what it is i am after to be honest!
My dr told me today that i have Angiomyolipoma in both my kidneys. Apparently there are numerous growths, with the biggest two being 1.5cm & 2cm
From what I have read, it is generally people with TS that develop tumours in both kidneys, however they have said i dont have that.
Did you manage to get any more info about having lots of growths but not TS? I only went for a abdominal scan for stomach pain so this has been a bit of a shock!
Thank you 😃
mel1267 debra09429
Posted
I had a 10cm aml on my right lidney which they insisted on embolizing this did not work and i lost my function and blood supply to right kidney. so now i have recently found out i have another aml on my left kidney which is 2cm but nothing has been said about doing anything or even keeping an eye on it so you can imagine my concerns i have been told i do not suffer with TS but i do have MS.
so i am fighting a losing battle with gps and renal consultants trying to at least get it checked once a year.
janet89368 debra09429
Posted
Hello Debra
Just read your info re angiomyolipoma. Devastating that you had to lose your kidney and I hope you are well on the way to recovery. I have 2, first one was diagnosed in 2009 on bottom left pole of the left kidney, and one in the middle of my right kidney which was diasgnosed in 2016. Originally, in 2009, I was told that treatment is needed when they get to 4cms. I had ultrasounds 6 monthly at the beginning which then went to 12 monthly, and is now bi-annually. The goalposts have been moved now and they wait till the tumours get to 5cms. Embolisation seems to be the treatment offered and apparently that can be done twice. After that, it is either partial or total nephrectomy. My next ultrasound is on 6/11/19 and when I see the Consultant this time I will be asking more questions. Like you, I worry because both of my kidneys are affected although I have never been tested to TS. I will update you when I can tell you more after I have seen the Consultant again. Wishing you all the best in your recovery. Janet
janet89368 debra09429
Posted
Hi Debra
I have 2 angiomyolipomas, first one found on left kidney in 2009, then one on right kidney in 2016. Have been monitored sporadically but after latest ultrasound on 6.11.19. have now received a letter from my Consultant discharging me as the angiomyolipomas are showing stability and because, to use his words, "it is difficult to know how long to go on following these but for now I think we can discharge you. If you ever have any blood in the urine please let your GP know and you should be seen again. If the bleeding is heavy then you need to attend A&E. I hope this is satisfactory and I will discharge you by letter but obviously if there is anything that needs to be discussed please do not hesitate to let my secretary know."
Mr B Grey MD FRCS (Urol)
Consultant Urological Surgeon
............................................................................................................................................................................
I have not been offered tests for Tuberous Sclerosis even though I have 2 angiomyolipomas. So, now it is up to me to watch for symptoms. Think being discharged is more to do with NHS cuts.
Please let me know how you are going on.
Regards.
Janet
dianaPB debra09429
Posted
Hi Debra,
Hope you are doing well.
I have an angiomyolipoma in my right kidney. It was 2.2cm in July 2018 and last ultrasound in Nov 2020 showed 2.6cm. No symptoms so far. Due to growth, my Dr now suggests embolization.
I am thinking it may be too soon for me to do embolization. I heard some food promotes growth, such as high sodium (salt) and high potassium food, potato. I wonder why we got this tumors in the first place if we do not have genetic or family histories, which I do not have.
If embolization is needed, which and where can find specified intervention radiologists for kidney.
Anyway, hope to hear from you.
Thanks,
Diana