6.5cm complex cyst on left adrenal gland

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Hi i wondered if anyone had info or advice. for 5 yrs now i have suffered terrible with back and abdominal pain, stomach swelling sometimes for days, after several GP visits and being fobbed off with IBS. i finally got sent for abdo scan last november. this showed a cyst on left kidney, this was scanned 6 months later and i was referred to urology as they said it was now classed as a complex cyst. it has changed structure and showing calcifcation. urine shows increased wihte cells on every check but clear of infection, kindney function fine and as far as i am aware all other bloods are fine. uroilogy consultant sent me for CT scan with contrast and has now said the cyst is from the adrenal gland as this is not his area, so he has referred me to endocrine specialist. i have an appointment with the consultant in 3 weeks but im worried i dont know what to expect

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  • Posted

    hi claire

    so sorry about this. In addition to seeing the endo you could look into dietary methods to help shrink the cyst. Do you have a high calcium diet that you know of? What are you favourite foods at the moment?

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    • Posted

      hi thanks for your reply, i tend to follow quite a healthy diet. lots of friut and veg, lean meat etc. i dont really eat much dairy although cheese is a downfall which i have 2 or 3 times a week. i do seem to go through fazes of craving salt which can last a few days. some days i forget to eat, as crazy as that sounds i just dont get hungry and if busy with work  and family i sometimes sit down at night and realise i havent eaten. im driving myself insane wondering whats going to happen next. i went to my l;ast appointment on my own and when the urology consultant said he would have to refer me else where i kind of went into shock said ok thanks and left.asking no questions, and of course when i recieved the appointment for the endocrine department i rang up but they cant discuss over the phone. 
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    • Posted

      oh claire I feel for you!

      well bb has come on with some really helpful info.....SO you are not alone anymore XXXXXXXXXXXX

      tell me about the cheese thing...irresistable.

      but lets see what bb has to say and i'll take a back seat. she is very well placed to assist you. Hi bb xxxxxxxxxxxxxxxxxxxxxx

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  • Posted

    Hi, I'm not sure the difference between a cyst and a tumor, but I have 2 stories on here before and after my surgery. It discusses the tumor I had on my left adrenal gland. Because there's something on or near your adrenal gland, it didn't matter if I changed my diet or not. It had to come out in order for the adrenal gland to function properly. Not sure what all symptoms your getting, but if you read my story before my surgery, maybe some are simular. I myself had to see an endocrinologist (hormone specialist). You will be in good hands.
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    • Posted

      Hi thanks for your reply.  Hiw do I find your stories? Im new to this so unsure how it works. Xx 
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    • Posted

      aaah i have just worked it out and read them. i dont seem to have any of the symptoms that you had. maybe thats the difference of the tumour and cyst? it must have been an awful time for you and glad you are recovering well. xx 
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  • Posted

    Hi Claire, I was referred to an endocrine specialist earlier this year. They discovered a benign tumour in my left adrenal gland and I ended up have a left adrenalectomy in May. They removed the adrenal gland and the tumour successfully. The downside for me is that my left adrenal gland had been working overtime and creating way too much cortisol and thereby pushing up my blood pressure too much. Because my left adrenal gland had been working overtime, my right one had shut down.

    Once I had the operation I was then given high doses of corticosteroids on a daily basis and they have been gradually dropping me down ever since to try and encourage my right adrenal gland to start working. Unfortunately it hasnt started working yet but I'm told I really have to give it until christmas before we see if it will or wont ultimately.

    I was in hospital for four days and was back home sorting teenagers and homelife really quickly. I have had repercussions because of the coming down off the steroids too quickly at one stage but thats another story! Good luck and I'm sure everything will be fine. I'm 51 and normally very active and fit. Make sure you ask lots of questions, take a list with you as sometimes they baffle you with science!

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    • Posted

      hi melanie, thanks for your reply. everywhere i have read its mentioned high bp but mines been normal throughout. how big was your tumor? im wondering if there is a big difference between whats classed as a tumor and a cyst. on the copy letter send from my urologist to endocrine it does say its benign looking but specifies that its not their area. 
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    • Posted

      Hi, Claire, I'm glad to here your not getting the symptoms I had from my tumor. I'm guessing mine and your's, your's being a cyst, and mine a tumor, are 2 different things, causing different problems. I hope all your problems work out. Sorry I couldn't help.
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  • Posted

    well after my appointment i am still none the wiser, they arnt sure weather the cyst is coming from the adrenal gland or directly above it. They have done a whole load of blood tests and said they will drain the cyst to see if my symptoms dissapear after this but dont want to see me for 3 months. hate the not knowing and the pain i am in.consultant said i should be having no pain from this but the pain is in the exact area the cyst is. so either i am imagining this or she is telling me lies ha 
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  • Posted

    Hi Claire. My endo guy was surprised that I had only a little bit of pain in my back as he thought I would have had a lot of pain around my kidney with my tumour. They couldnt quite work out exactly how my tumour was positioned but they could see something there so said they would find out on operating. It turned out that my tumour was housed completely within the adrenal gland (which in my mind was good) so they were able to remove the tumour with the adrenal gland entirely. I think I would push for further tests rather than an attempt at draining a cyst. They need to get in there and have a good look using keyhole surgery with a laparoscope surely? Dont be fobbed off if you feel they are putting off the inevitable anyway. Can you go for a second opinion?
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    • Posted

      I feel like im getting nowhere. Im in constant pain some days just a dull ache others its like someone's squeezing very slowly and releasing slowly.  When Im sat down and twist over to the left its like I can feel something in the way. Im sure they think im making it up. Im an emotional wreck I just want answers. And now gotta wait til 12th jan!!!!! Im not sure where to go for a second opinion x 
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  • Posted

    Where do you live claire? My endo guy is contactable by email. I ended up with mine by being referred by my cardiologist who I have been seeing for years for high blood pressure. When the bp was getting out of hand even though I was taking lots of meds, he suspected it was a tumour either on adrenals or pituitary.

    You need to go back to your doctor or another doctor and demand to see someone else and get some answers. There should be no need for you to have all this pain and waiting is not helping your mindset. I know its easy for me to say but I am one of those patients that asks lots of questions. Sometimes the louder you shout the more likely someone will listen to you. unfortunately when you're feeling crap you just want to hide away but go for it and make another appointment with your doc and discuss with them again and again and again until you get the answers that you need.

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    • Posted

      Just an update. Cyst is now 8.5cm. They have decided on aspirating it. Had a 45 min ultrasound the other day while they tried to find a direct route to it. 1 def direct route leads them to an area of the cyst that contains calcification.  Unsure the needle will pierce through.  The only other route is risky. Where the cyst is positioned is on my adrenal gland behind my spleen and under my lung. My lung squashes it on inhaling. Tricky job to get direct without nicking any organs but surgeon will 'have a go'. Aprehensive,  nervous and a mix of emotions
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