adrenal tumor

• By TinaDiane
• Posted February 21, 2009 at 5:47 pm
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Hi Tobycujo,
Sorry to here about your troubles. Do you know if you have VHL? Do you know what kind of cancer cells were in your bladder, or if they were encapsulated (meaning the tumor probably was all removed and will not spread to other parts of your body)? If you have VHL, the tumor on the adrenal gland may be a pheochromocytoma. This is a kind tumor that people with VHL or a multiple endocrine genetic disorder can have. It usually produces hormones that make us have high blood pressure, sweating, flushing, anxiety, and other symptoms. The hormones can be measured in a 24 hour urine collection test and they look for "catacholamines". If these levels are high, they can do additional scans. Since they already know where the tumor is, that is a great help!
I would be glad to help you, with a little more information. I had 2 huge tumors on my adrenal glands and had them removed 22 years ago, and I have VHL. If you don't have VHL, maybe someone else is available to help.
Good luck and best health to us all.
Tina

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• By tobycujo
• Posted February 22, 2009 at 9:19 am
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Thank you so much for the information. You are the first person I've talked to that has had an adrenal tumor. I don't know if I have VHL but I have read quite a bit about it. I am so sorry you have this but glad that you were able to have your tumors removed. The information you gave me I have read about in my research to find out more about this tumor. My bladder cancer was pappilary carcinoma and was removed without spreading. I have to go every 3 months now and have a scope of my bladder to watch for an recurrances. I really appreciated all the things you enlightened me on and will be discussing these issues with my doctor. I do have high blood pressure, anxiety and hot flashes so this information may be vital to how my doctor proceeds. Thanks again and good luck to you. God Bless!

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• By dizzybee
• Posted February 22, 2009 at 1:02 pm
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well, i had a tumor on the adrenals and then i didn't on the next MRI (hmmm?) anyway, they were both removed to stop the progression of cushing's disease. They had both hemorraghed and were hyperplasia by the time they removed them -- i guess i was just one good scare from killing over, literally LOL.....but, when they did the pathology on them they were riddled with itty bitty tumors (they think due to the hyperplasia)....it is a sucky surgery, probably the 2nd to worst of the 12 that i've had, but once you start moving it gets so much better.....

are they thinking of surgery for you? or medication? i see you have bladder issues.....just be careful of the meds and the high blood pressure so you don't tax your kidney beans too much.....i was in that boat and that is very scary.....

best of health to you!!

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• By AEckerman
• Posted February 22, 2009 at 1:18 pm
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Hi tobycujo,

If you have an adrenal mass as well as high blood pressure, anxiety, and hot flashes; it is very important that your doctor tests you for a pheochromocytoma.

If there is any chance it may be a pheo, which certainly sounds like it could be, it is critical that your doctor DOES NOT try to biopsy it. It could be very dangerous. It is also not true that it has to be 3 cm. before it is removed. Very small pheos can wreck havoc on your body.

I would strongly encourage you to get the "Plasma FREE metanephrine test - which is a simple blood test - this test is a little more accurate and reliable than the 24 hour urine test. However, in our personal experience, we have found the urine test to be just as accurate. Some doctors want to do both tests.

It would probably benefit you greatly to obtain a second opinion from a reputable doctor familiar with pheochromocytomas.

Please feel free to write me directly.

God bless,

Alison

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• By TinaDiane
• Posted February 22, 2009 at 1:27 pm
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Tobycujo,
Please don't worry if you need surgery to remove a tumor from your adrenal gland. Just be sure to have it removed at a hopital with a medical team that has done this before (Many Many Many times). They can now due the surgery laparoscapically (through a small incision) and spare the adrenal gland.
We are getting way ahead of ourselves here, talking about surgery!!! So, my best advice for you, is to take one step at a time!!! You may want to ask your MD to do genetic testing for VHL if you have reason to believe you have this disease.
Tina

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• By tobycujo
• Posted February 22, 2009 at 4:55 pm
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Thank you for responding to my questions. I am sorry about your medical issues. It sounds like you've had a rough road. My prayers are with you. I definately plan on pursuing a 2nd opinion since my new bladder doctor hasn't suggested doing any further testing other than a repeat ct in 4 months. Thanks again so much for the information. Take care of yourself!

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• By tobycujo
• Posted February 22, 2009 at 4:59 pm
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Thank you for all the information you sent. It is so enlightening to hear from others who have had this problem. I hope all is well with you now and I definately plan on talking in-depth with my doctor about the things you mentioned. I have read quite a bit on this subject and it sounds like you have a great deal of knowledge on this. Thanks so much, I sincerely appreciate it. Take care!

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• By donnab
• Posted February 23, 2009 at 1:22 am
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I agree with getting tested for a pheo, especially if you have High Blood Pressure.

Pheo's under 3 cm do not tend to spread or metastisis, that is why the doc may feel it's safe to wait until it's that size. But like Alison said, pheo's under 3 cm can wreak havoc and cause health concerns (uncontrolled high blood pressure just being one of the things it can do).

Also, if you have no other reason to believe you have VHL other than the adrenal tumor, then you might think about taking a look at the Pheo Support Group for lots of information about Pheo's.

http://pheochromocytomasupportboard.yuku.com/forums/3/t/Welcome-to-Pheo-Sup port.html

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• By joyceg98
• Posted February 23, 2009 at 2:04 pm
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All good advice above.

We use a 3-cm guideline for kidney tumors, but not for pheos. The critical factor with a pheo is whether or not it is "active" -- that is, emitting hormones that are jagging your cardiovascular system. That activity can cause heart disease, which you do not want.

As described above, the plasma free metanephrines test is the best determiner of the activity level of the pheo. That in combination with a 24-hour urine collection is considered the best way to measure activity. If the pheo is active, then you need to have a conversation with the doctor about how to get rid of it. Unfortunately there are no good ways to control pheo activity with drugs -- only in the short term, but it's not a fix for the problem.

As noted above, the "standard of care" for a pheo in VHL is a laparoscopic partial adrenalectomy -- doing it laparoscopically means you don't have a large incision, you only have three small incisions you could put a band-aid over. Less risk of infection, faster recovery. Partial adrenalectomy means they remove as much as needed, but not the entire gland.

Note that I said that's the standard of care for pheos in VHL. There are five genetic flaws that can lead to a pheo. Depending which of these five is happening in your case, there may be a need for a different approach. And yes, it sounds like you need a second opinion. Contact me directly at director@vhl.org if you need a name or two of doctors in your area.

Best wishes,
Joyce

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