Pheochromocytoma: Anyone being treated for an adrenal mass?

Thank you for your response…as of today I called about the authorization of my Pet Scan.. denied due to not enough previous testing done that requires a Pet Scan.. had a 24 urine test which showed elevated levels and Cat Scans/with contrast of the chest and abdomen..am waiting for the next step..very frustrating!

Good morning!
Has anyone had an Adrenal Cortical Carcinoma ACC test done with your 24hr urine test? Why is this test necessary? If is it necessary for someone with exceedingly small nodule in one adrenal glands. My endo ordered this test, without explaining and informing me that my insurance may not cover it. I have done multiple urine tests with Metanephrine slightly elevated.
The ACC test was not covered by my insurance as it was reported as clinical risk and integrated clinical risk for adrenal cortical carcinoma, adenoma, or other adrenal malignancy.
Has anyone had this test done with their 24hr urine sample test?

Thank you!

Hi @vkoonz, blood tests and urinalysis are used to check hormone levels. Your endocrinologist might get a 24-hour urine test if you’ve done other kidney function tests — like urinalysis or blood tests — and they need more information about how your kidneys are working. The results can help your doctor diagnose suspected cancer or evaluate it.

Have you been diagnosed with adrenal cortical carcinoma or are you in the diagnostic phase? How are you doing?

I have posted several times on another thread, for Paragangliomas, and it was suggested to look at this one also. I have a paraganglioma on the left side, which is going to be removed on Dec. 10th by Dr. Carling in Tampa. I wanted to point out the different 24 hr urine tests I had done early this year. When it was first suggested to check my hormone levels (by my GP), all they did was tell me to do it. Normal levels. Let me back up, Last year I happened to mention to GP that for years I would wake up in the middle of the night with my heart pounding, anxious, sometimes sweating etc.. Led to nothing until I mentioned it felt like a mild adrenalin attack. So, next step was to see an endo doc, and when I mentioned to him the normal 24 hr test results, he had me do it a little different. I was not to start the test until I had one of these nighttime episodes, when I did, get up and urinate normal, THEN start the 24 hr test. The results were totally different, epinephrine and metanephrine were 4x the normal maximums. All that just to suggest discussing this with your doc before starting a 24 hr urine test.

My endocrinologist says I have Primary Aldosterone even though my renin level is over 1 @ 1.6.
Pheocrhomacytoma is not suspected and abdominal scans have not shown tumors. I'm being treated with BP meds, but my BP is still all over the map and can go over 200 which has put me in the ER 8 times in 3 months. I'm 78, in good health otherwise, good results on all kinds of cardiology tests. Should I be considering surgery. The endocrinologist is very clearly opposed.
Any help will be much appreciated.

Hello @moritzm and welcome to this discussion on Mayo Connect. I can see that you have some concerns about the proposed treatment. Have you considered getting a second opinion?

If you can be seen at a Mayo Clinic facility, here is a link with information about obtaining an appointment, http://mayocl.in/1mtmR63 at any of Mayo's three locations. If an appointment at Mayo is not possible I would encourage you to get a consultation at a university medical center. These health care facilities are research-oriented and can provide good answers for complicated medical issues.

It is important to put your mind at ease regarding the best treatment plan. Will you post again and let me know how you are doing?

My endocrinologist is at a university based medical center and I have a lot of confidence in her. My urologist whom I've kn
own for years has just reviewed plans for further tests of adrenals, kidneys as well as neck-spine and he is very reassuring that these are all appropriate and that removing adrenal glad is not something to be discussing unless and until some pathologies are identified. So I am good with proceeding with imaging and tests. And yes I will post on my progress...thanks so much for your note. meg

@lisanewell68 I to have a pheochromocytoma and have been battling since 2015 trying to get answers and solutions. Here is what I have learned. The best adrenal operation for roughly 95% of pheochromocytomas (and thus, likely your pheochromocytoma) is the posterior retroperitoneal adrenalectomy, or more simply put, the Mini-Back Scope Adrenalectomy (MBSA). There are several factors that an expert adrenal surgeon will consider in determining which is the best adrenal operation for your pheochromocytoma:
The size of the tumor (as measured on preoperative X-ray: oftentimes a CT scan, MRI, or specialized nuclear medicine scan)
The type of adrenal tumor (Is it very large? Is it producing too much hormone? Does it look cancerous, or has a known cancer elsewhere in the body spread to the adrenal gland?)
The appearance of the tumor on preoperative X-ray (Is the tumor involving surrounding structures, such as organs or vessels?)
A history of previous abdominal operations
The surgeon's experience with the different adrenal operations. In the rare (5%) instance that the pheochromocytoma is cancerous or extremely large, typically 8-10 cm or greater, one of the other adrenal operations mentioned is likely a better option. However, if your surgeon is not at least discussing the BEST adrenal operation with you (MBSA), then you may want to consult with a different surgeon. Adrenal surgery is almost NEVER an emergency. The tumor that needs to be removed has typically been present for at least 4-5 years, so you have time to seek an expert surgical opinion.
Prayers of comfort!
Dawn