I was just diagnosed with a mass on my adrenal gland!!

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I was just diagnosed with a mass on my adrenal gland 5.6 cm. I was told they believe at a phaochromocytima. I need to have it removed because it’s large, and I have high blood pressure, excessive sweating, tiredness and anxiety. I was told it’s most likely not cancer because it’s very rare but I’m extremely scared. I’ve never had surgery, in worry this can be cancer and I don’t know what to think. Next step is 24 hour urine test which I’m doing tomorrow. It’s scary because they say this is very rare to have in the first place, and I have it. I don’t know what to do!

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  • Posted

    Hi Anna

    Please don’t panic must tumours are benign on adrenal glands. 12mths ago I had a15 cm tumour and my adrenal gland removed.  I am now fit and healthy. Xxx

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    • Posted

      Thank you so much. I’m trying to remain calm. Was the surgery horrible? Normally how long do u stay in the hospital? I’ve never had surgery before and I’m scared
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  • Posted

    Hi Anna

    Rachel is absolutely right. I know it a easier said than done but please do not panic. I had both my adrenals removed as a result of pheos in both of them the largest was 6cm. I healthy and well and on hydrocortisone and fludrocortizone for Life ! I have a busy life with a full time job, a 6 year old and even find time to do karate. Good luck dear and keep us posted! Life is good and I appreciate every moment of it. Please don’t panic. Make sure you ask a lot of questions to your endocrinologist. If you need to chat, ask questions etc let me know and we can pm on Facebook. 

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    • Posted

      Thank you so much!! It’s scary enough knowing this is rare to begin with. Seems I’m not as alone to begin with. I have one on only 1 adrenal gland, but it’s still scary!! I’m doing my 24 hour test tomorrow to confirm but the dr is most likely sure this is what it is. Even said I may be able to come off of most if not all blood pressure medications and maybe my other health issues will even put also. I’m also diabetic and I read that this can cause high blood sugar. I don’t want to read into that or get my hopes up, but I’m praying most of my health issues will go away. I’m also getting married in March, so I’m extra stressed to begin with!! I want to be healthy and have fun at my wedding!!
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    • Posted

      Hi, I was reading your message, and was wondering how your life is now after having both adrenal glands removed. I had a giant pheo of 22 cm removed 6 months ago on my right adrenal gland. Now I'm having symptoms all over again, I start a 48 hr urine test tomorrow to see if I have another on my other one x

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    • Posted

      HI jennie

      Life is as normal as it can be now. Things were difficult at the beginning, especially getting used to the medications . however it is part of life now and i pretty much do everything i used to do prior to the op. I listen to my body a lot and ensure i look after myself during tje winter months. i have had to double my meds once or twice in the winter due to cold/flu but no crisis (touch wood). i also have a fantastic team here who follow my progress and i do the regular tests, checks and visit to the endo nurse.

      the first few months can be scary but it definitely gets a lot better. good luck and if you have any questions please do not hesitate. the people here and on endo forums on facebook have been a great support.

      chantal

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    • Posted

      I have been looking after myself since I had an Addison's crisis in 2015. Like you I double the amount of HC for a couple of days, last winter 3 days because I was not sure if 2 days was enough. Winter is coming here now in Australia. Listening to one's body is important and to make possible doctors to listen how we feel is also important!

      I am glad you have help around and feeling ok so to speak.

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  • Posted

    I had hormone issues IBS issues but all gone now so even though it’s stressful and a worry it will be worth it in the end. X
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    • Posted

      Thank you so much!! I’m trying to remain on what I’ll feel like after and stay positive. Then I’ll be able to enjoy my wedding and the rest of my life!
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  • Posted

    Try not to panic is the first thing. You are having tests and it seems the doctors are helping. They have told you that is not cancer probably. I am sue it is not, just keep on asking them questions, right questions,  but please do not panic; it does not help. Have positive thoughts, do not thing the worse. I guess it is easy said than done... all this is what I try to do myself since I was diagnosed a pituitary adenoma, and when I had a brain tumor 12 years ago.
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  • Posted

    The advice given in here to stay calm is sound. There is no need to get anxious.

    What I do suggest is not to focus so much on all the tests and scan you need, instead focus on being under the care of the best endocrinologist you can find. If you don't have a great endocrinologist, go hunt for one.

    It is such a doctor that interprets all the test results and is best placed to make a diagnosis. Often a diagnosis that other less able doctors (non specialists) will be unable to make.

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  • Posted

    Anna,

    It is imperative that your aldostereone levels are checked. The classic case for Conn's Syndrome (Primary Aldosteronism) is high Aldo and low potassium. This raises your blood pressure and unless diagnosed correctly cycling through blood pressure meds won't work. often the excess aldostereone can be driven my a benign tumour on the adrenal gland.

    Let me know how you get on.

    Paul

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