I was just diagnosed with a mass on my adrenal gland!!
Posted , 13 users are following.
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!
1 like, 17 replies
rachel_36939 Anna1021
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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
Anna1021 rachel_36939
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lea28569 Anna1021
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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.
Anna1021 lea28569
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jennie08607 lea28569
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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
lea28569 jennie08607
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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
cool_catalan lea28569
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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.
rachel_36939 Anna1021
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Anna1021 rachel_36939
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cool_catalan Anna1021
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Anna1021 cool_catalan
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cool_catalan Anna1021
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cool_catalan Anna1021
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barney34567 Anna1021
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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.
Conns Anna1021
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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