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EndocrineWeb Community Advice

Pheochromocytoma

From: Sickntired - 5 years 43 weeks ago

I am struggling to come to terms regarding the abovementioned illness. I have been diagnosed with it a couple of weeks ago and will have a ct scan within the next month to find the tumor. Anybody out there that has the same thing going on? Apparently it is extremely rare and no one I have spoken to, has ever met anyone who has this! I dont know if it is life threatening or not? Some advice will be helpfull!!!

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Hi, I just saw this post and my sister had a pheochromocytoma. She had "spells" for about a year and a half before they discovered what it was. She had it removed and is doing fine. You are right this is very rare, what is even more strange for our family is that my dad died a year ago tomorrow of adrenal cancer. (that is also very rare)He found out 11 days before he died that he had adrenal cancer. His was in the cortex of the adrenal gland and hers was in the medulla. My sister's was found early enough,my dad was not so lucky! Her tumor was benign. I hope everything goes well for you!

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I too have tumor on my adrenal gland ..have for a few years now. Dr has been "just watching"it. I feel it is the Pheochromocytoma because I have all of the symtoms except when I had the 24 hr urine test it didn't agree?????
But I have been sick for a couple months with severe headaches and nausea and have even passed out. My blood pressure is up and down. I have lost weight.( not complaint there tho) . I have had heat intolerence for many years. I just get drowned. I carry a little battery operated fan with me every where I go. I will have another CT scan tomorrow. I certainly hope this one will be helpful. I hope this will help you some.

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I would definitely have them check into this more, my dad had the same symptoms as you and they told him he had menieres disease which we question now, he had all the symptoms of mineres except ringing in the ears. He could be sitting in his chair and all of a sudden become very nauseated with a severe headache and have sweat dripping right off from him. Light also bothered him when he had a spell. He could not stand because he was very dizzy. He lived like this for about ten years. He went to many doctors who never discovered his tumor on his adrenal gland. I wish you the best.

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I just had another CT scan...Dr tells me that there is no change withmy adrenal tumor but I know because of how I feel that there HAS to be something going on!!!! A few years ago a CT scan came back and said that it didn't even show up...that it didn't exist...then next year it was there again!!!! I question this greatly!!!! I KNOW how I feel. And thanks to this site and reading about the symptoms it imforms me more about this disorder. I certainly would appreciate advice from any of you as what to do now. My Dr says from call from nurse with report on scan...no need for return visit!!!!! How about that!!!!

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My mom was just diagnosed with this. I'm no Dr., but everything I've read so far indicates that surgery to remove the tumor and adrenal gland (depending on where it is) is the major step to relieve the symptoms. Have they done any test besides the urine test? There is a more reliable test, not sure what it is called, but it can take up to 10 days to get a result. If you have all the related symptoms, have a positive test, why on earth would your dr think it is ok to just "watch" it, and not remove it?? Why hasn't he taken more steps to find out for sure?? It is no quality of life to live this way. Get a new Dr! Try finding an endocrinologist that may have some experience with pheochromocytoma. It's rare, but not so rare that there isn't someone who has more knowledge than your present dr. At the very least, get someone who's more proactive and wants to help you. Remember, they work for YOU. :) Good luck, and I hope you find the help you need.

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Just went to a different Dr today..am scheduled for more tests later this week...and am am to go to Mayo Clinic in Jacksonville Fl as soon as they set up an appt for me. This Dr is not just pushing me away!!!!!!

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I am glad that you went to a different doctor. I can't believe that they would just "watch it". I watched my dad have his "spells" (as he would call them) and it was heartbreaking. It came to the point where he didn't want to leave home because he didn't want to have a spell. I am glad you have found a doctor who is going to do some more tests and look into this further.

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Wow...I am so happy..this Doctor..I have had so much respect for him in the past...now it is RESPECT!!!He is sending me to the MAYO CLINIC in Jacksonville Fl! I don't have an appt as of yet..but I certainly feel HOPE!!!!
He has ordered alot of tests already..different ones. This is a Doctor that I have been seeing for my migraines in t he past. I hadn't seen the new Doctor as of yet..no need to now.Wow...I just can't believe it...somebody pinche me!!!

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I had an adrenalectomy due to a Pheochromocytoma in 2001.

After three years of seeing various doctors...cardiologists and neurologists searching for the cause of my "crazy episodes" = headaches, heat intolerance, sweating, racing heart, and dizzy spells....it was during a stress test the cardiologist called for that my blood pressure spike was detected.

It was 240/120....I was 25 and in relatively good shape. After this I was told that I was at high risk for a stroke. After finding the tumor on my adrenal gland, I was then treated by an endocrinologist and they called for surgery the following week. The tumor was the size of a grapefruit but they were able to remove it laproscopically.

I have had annual catecholamine tests and have never had any reoccurring symptoms.

Although this is most often a benign tumor, there are defiantly other risks associated with a Pheochromocytoma.

Find endocrinologists if you suspect you have this tumor and don't delay. Best of luck!!!

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