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  • Tuberous Sclerosis and angiomyolipoma

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    Old 03-25-2005, 11:30 PM   #1
    awkitty77
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    Tuberous Sclerosis and angiomyolipoma

    I am worried about my test results and what they found on my kidneys. I am new but got a few responses from people here and I still find myself wondering and worrying all the time. I found out through a ultrasound and a CT with and without contrast that I have a TUMOR on my left kidney and right but supposedly benign, can I be confident of their findings? I am supposed to go for another CT (for monitoring) in 6mo. but I cannot live this way I am scared there is something worse and I sometimes feel like I cannot really live until I know for sure that I AM going to live. If anyone has further info I would be greatful as I just am not coping well with this and the doc said I may have Tuberous Sclerosis because I have TUMOR on both kidneys I really try to rationalize this but at the end of the day just end up scared. I do not sleep, eat or do anything but look this condition up on the web and I feel I am not living now just waiting ya know? do not know what to do and only 28 years old how can I have something so scary now (this young) just so confused with all the information I have read. help? I feel like a flippin hypochondriac worrying so much (and being on this board so much) but I need input and advise as my attitude about this changes daily ya know?

    Last edited by awkitty77; 03-25-2005 at 11:32 PM.

     
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    Old 03-26-2005, 10:26 AM   #2
    William Y
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    Re: Tuberous Sclerosis and angiomyolipoma

    Hi awkitty77,

    I am sorry that you still worry about your Kidney Masses. They are still very
    small in comparison with other people's Kidney Masses. Just monitor them in
    every 6 months to a year. If you do have Tuberous Sclerosis (According to
    your doctor), nothing you can do now. This mostly inherited and you don't
    sound like you have this ailment. Just relax and don't think about it. If you
    think this everyday, you are going to kill yourself with other sickness. Please
    do your normal life and monitor the Kidney Masses in due course. As you say,
    you are still young and have long future to go. One thing, I do recommend
    that you quit smoking and don't wait until July 4. Smoking can cause Lung
    Cancer and once it has been diagnosed, it can go much faster than Kidney
    thing. Please please do yourself a favor not to worry too much and in fact,
    sometimes, doctor does make mistake and misdiagnose things. Think about
    that people don't have a chance for CT Scan and they don't even know that
    they have Kidney Mass or Masses and still live as usual and normal life. How
    about in old days, there wasn't any so called "CT Scan or MRI". Indeed, your Kidney Masses are so small. There might be no change of the size in the next
    twenty years or so. If your don't feel anything wrong with your health, just
    live with a healthy and happy life.

    Last edited by William Y; 03-26-2005 at 01:29 PM.

     
    Old 03-26-2005, 05:56 PM   #3
    awkitty77
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    Re: Tuberous Sclerosis and angiomyolipoma

    William.......Thanks a lot I guess I just once in a while need someone to slap me back into reality and make me look at my odds and realize that everything could really be just fine and this may not actually be the end of the world. I will try to keep in mind what you have said and take it into better perspective and yes I will indeed try to quit smoking earlier than planned, promise. I don't want to jinx myself by saying I will quit but I will do my best that's not so much pressure and I believe I can do it becuase I used to be fat and I most definately conquered that (9 years ago in fact and still small) so anyway sorry to whine, just got myself freaked out again last night and thought I would try to find some support and there you were for me once again thank you so much it means so much to me that someone will listen I wish you a good day and a happy Easter Sir.

     
    Old 03-31-2005, 10:31 PM   #4
    awkitty77
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    Re: Tuberous Sclerosis and angiomyolipoma

    Hey
    I didn't want to really post a whole thread about this but gosh I am having severe pain in my right kidney tonight well I have had it all day and it has gotten worse over the day and I had cloudy urine this afternoon right about when the pain started and I am just worried right now and I just wish my insurance would kick in which it should any day now but I hurt so so bad right now I wish it was not about $ and about "are you ok or how do you feel not making $ off us. My dad has told me if it in the future turns out that I need a kidney he will dontate and I have not spoke with my brother about this matter but I know he would so my ? is will that most likely be a match or not if anyone knows then that would help because I am going to assume with my condition and my pain that I get, that I will at some point need a kidney Take Care All William I hope you are well

    Last edited by awkitty77; 03-31-2005 at 10:35 PM.

     
    Old 04-01-2005, 12:57 PM   #5
    William Y
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    Re: Tuberous Sclerosis and angiomyolipoma

    Hi Awkitty77,

    I wish someone who can tell you what has happened to you. However, I don't want to keep quiet before then. I am sorry to hear that you have severe pain in your right Kidney and I can feel how bad it was. You might have a Kidney infection since you didn't have Kidney Stones in your Kidneys according to your previous CT Scan. The small mass in both of your Kidneys shouldn't make you in such a severe pain at this stage because they are still very small. Cloudy urine might happen to everybody occationally. Keep monitoring it and it should clear up later. You can check what is the new Insurance in effective by calling the Insurance Company. Then, go see a doctor to find out if you do have Kidney Infection or not. There is medicine for Kidney Infection. You have a very nice father and brother that they want to support you in case. I personally don't think you need a Kidney from anyone anytime sooner or ever.

    I feel fine and I fortunately don't have pain in my Kidneys. Had an hour talk
    with my primary doctor last Tuesday and he was so patient in discussing my
    situation. He still recommended me to remove my left Kidney before it becomes cancerous. I just can't balance right now the benefits and risks though. Hope you feel ok by now. God Bless.

    Last edited by William Y; 04-01-2005 at 01:11 PM.

     
    Old 04-01-2005, 05:29 PM   #6
    awkitty77
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    Re: Tuberous Sclerosis and angiomyolipoma

    Thanks for your reply William, I am feeling better today in fact a lot better I drank as much water as I could to flush my kidneys and that must have helped a bit but I just worry because you are right that my tumors should not be causing pain like this and I can't help but think that I do have an infection too but when I went in to the Dr. in the 1st place I was having the same type of pain but my urine showed no infection, I have heard of people having stones that are not always seen because of their size and furthermore what they consist of does'nt always show up so I just wonder about that in fact sometimes I wonder if what they saw were in fact tumors or is there any possibility that they were in fact seeing stones or something, but I am probably wrong but just a thought. As for the cloudy urine, I get that maybe once a week and here again I just do not understand it but my insurace should be in effect, I think today so that will be good and I can finally go to another Dr. and figure this out. I really feel that once I get a 2nd opinion I will be able to feel more confident about all of this I just hope it will be long awaited good news and not bad. William if your Dr. is concerned about your mass turning to cancer then you must have the tumor that starts with the letter O (can't remember the name) but the other that you mentioned besides the angiomyolipoma because the O one is the one that has potential to turn to cancer. Did you ever get an answer on which one you have? Anyway even if you need your left kidney removed you can still live very normally with one kidney as far as I understand but you just have to take extra care of it but I think your Dr. sounds like he knows what he is talking about because I really can't see a Dr. advising you to remove a kidney without taking into consideration whether that is the best way to handle it or not, I mean don't get me wrong I have heard of people having removal and not needing it but if I were in your shoes I'd rather be on the safe side and opt for removal rather than wait around for cancer but couldn't they possibly just cut the tumor out? or is that not an option I wonder however it is good that you have no pain and either way it seems that you should get along just fine in the long run. Anyway thanks for your response it is always nice to hear from you keep me posted on what happens and Take Care of Yourself

     
    Old 04-02-2005, 10:19 AM   #7
    William Y
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    Re: Tuberous Sclerosis and angiomyolipoma

    Hi Awkitty77,

    My primary doctor is guessing what I have Angio or Onco. There is no actual
    proof what kind of Kidney Mass is. Up to now, the modern medical equipment
    cannot test a Kidney Mass if it is cancerous or not without taking Kidney out. However, by taking it out, cancerous or not, the patient has to sacrifice a Kidney. It is very sad that if it is cancerous, it will likely spread to other locations; like Lung first, etc. after the removal of the Kidney. If it is not cancerous, patient will lose one Kidney, the quality of life and the risks of not being survived in post-surgrey. To take out the mass only from the Kidney is medically possible depending on location, but again if it is cancerous, it will immediately spread to nearby tissues and/or organs.There is a new invention by the NCI to test urine for Kidney Cancer. Unfortunately, this test will take a long time to be approved (Might be for years) before it can be used in the medical market. Your Kidney pain, without blood in the urine, seemed like Kidney Stones. This could be a good news for you because you will then talk about Kidney Stones and not Kidney Mass (Tumor). Please find it out from your new (2nd opinion) doctor and let me know. God Bless.

    Last edited by William Y; 04-02-2005 at 09:54 PM.

     
    Old 05-06-2005, 05:17 PM   #8
    Bonnie Jo
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    Re: Tuberous Sclerosis and angiomyolipoma

    This is to awkitty77. Me and my eldest have tuberous sclerosis. The first thing you have to do, I have found, is to find medical personnel familiar with this disease. Most don't know what you are talking about. If you do have tuberous sclerosis, you will have to have periodic m.r.i.'s and ultrasounds of the kidneys, as this can lead to angiomyolipomas as well. Your best bet is to contact the National Tuberous Sclerosis Alliance at 1-800-225-6872. They will be able to put you in touch with a specialist about tuberous sclerosis, and also give you some general information. Hope this helps.

     
    Old 05-07-2005, 11:12 AM   #9
    awkitty77
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    Re: Tuberous Sclerosis and angiomyolipoma

    Thanks for your input I will surely give them a call after my next ct scan as then I imagine at that time I will know a little more such as have they grown and things like that I plan for my next ct in september unless something goes wrong before then I have noticed bubbles in my urine for the past month or so which I assume is not good but maybe I have had that for a bit longer than what I am thinking but just never noticed before I'm not sure anyway that is about all the symtoms I have now and I am just trying to care for my kidneys naturally until I go in again. I just had blood work done to check kidney function and I will have the results sometime in June so I guess we'll see. Good luck to you and your child I can't imagine the stress you deal with raising a child with TS. It has to be trying. God Bless

     
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