@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
@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
Don't endocrine surgeons perform adrenal surgery? Yes, but unfortunately, a recent publication by several endocrine surgeons showed that endocrine surgeons in the United States perform fewer than 3 adrenal operations per year on average--this clearly does not make them the "best". They concluded that 5 adrenal operations per year would make somebody "high-volume". I would let a surgeon operate on me if I knew the surgeon performed 5 of these operations per year. You must ask your surgeon the obvious question: "How many adrenal operations did you perform in each of the last 3 years?". If they can't look you in the eye and give you a satisfactory answer, then please, seek a second opinion. For most of you, this means you will need to travel, but let's face it: few people know anybody that had an adrenal operation. Wishing you all the best of health.
Dawn
Yes! @tmhb8 i was just diagnosed with an adrenal mass. It was found incidentally. It is a fairly small tumor. I was referred to endocrinologist, and had several initial labs, many to test hormones, I also had a ct scan of the adrenal glands. When I met with the endocrinologist she said I was unusual because my labs looked good but my ct scan was a little worrisome because the mass was very vascular. So I had to do a 24hr urine test that sent off to Mayo- some new test. Results are pending, but I was told if this test comes back ok, just repeat labs annually for a few years and then nothing. The dr said these are being found to be more and more common- so after initial work up if things look good then basically nothing probably to ever worry about. But every mass she said needs to be investigated. So I think it’s crucial to find a good endocrinologist. I am still learning about this- so I don’t know if I helped at all. Best wishes
Jeane
I am in Florida and my adrenal mass grew from 3cm to 4cm in 8 months. They are recommending taking it out. The hormones are normal and they cannot be sure with the CAT scan. They do not do the 24 hour urine here. I am scheduled for surgery however I am wondering if I should have that test and where I can go for it here in Florida. I am very far from Mayo clinic and live in Boynton Beach.
I am in Florida and my adrenal mass grew from 3cm to 4cm in 8 months. They are recommending taking it out. The hormones are normal and they cannot be sure with the CAT scan. They do not do the 24 hour urine here. I am scheduled for surgery however I am wondering if I should have that test and where I can go for it here in Florida. I am very far from Mayo clinic and live in Boynton Beach.
@janfam - the 24 hr test was one I believe they told me only Mayo does— it was sent to Mayo Rochester and it showed the percentage of it being cancer vs noncancer, or a pheochromocytoma- it showed all kinds of hormone levels— it was a good test- but in the long run I don’t know how helpful it was in diagnosing- because I still don’t have a diagnosis. My mass is much smaller than yours- on 1.8 and has been that size for a few years- so it’s much more stable than yours, and I just found out this week that the adrenal board reviewed my case here at Mayo and they recommend it being removed because it’s a pretty simple procedure with little risk. I would just recommend finding a surgeon who removes adrenal masses regularly- try one of the university hospitals near you, or bigger centers. But I would think growing that fast most are going to say remove it. Take care!
@janfam - the 24 hr test was one I believe they told me only Mayo does— it was sent to Mayo Rochester and it showed the percentage of it being cancer vs noncancer, or a pheochromocytoma- it showed all kinds of hormone levels— it was a good test- but in the long run I don’t know how helpful it was in diagnosing- because I still don’t have a diagnosis. My mass is much smaller than yours- on 1.8 and has been that size for a few years- so it’s much more stable than yours, and I just found out this week that the adrenal board reviewed my case here at Mayo and they recommend it being removed because it’s a pretty simple procedure with little risk. I would just recommend finding a surgeon who removes adrenal masses regularly- try one of the university hospitals near you, or bigger centers. But I would think growing that fast most are going to say remove it. Take care!
Thank you! I am having surgery here at The University of Miami for May 17. I think if mine was your size and that stable I would not do surgery. Are your hormone levels normal?
@janfam , Yes. My hormones all normal. But my ct scan and mri show a very lipid poor mass- they can’t determine if it’s just lipid poor adenoma or a “silent” pheochromocytoma based on the scan- we have been watching and scanning every 6 months for a while… size is stable so I am not sure yet what I will do. Best wishes for an uneventful surgery and speedy recovery! Lots of positive wishes coming your way! Keep us updated on how it goes!
@janfam , Yes. My hormones all normal. But my ct scan and mri show a very lipid poor mass- they can’t determine if it’s just lipid poor adenoma or a “silent” pheochromocytoma based on the scan- we have been watching and scanning every 6 months for a while… size is stable so I am not sure yet what I will do. Best wishes for an uneventful surgery and speedy recovery! Lots of positive wishes coming your way! Keep us updated on how it goes!
So a CT Scan I did a few weeks ago led to an incidental finding of Pheochromocytoma. Because of the size of the tumor; I’ve been advised that taking it out is most ideal. It is however not an emergency; I am not exhibiting any symptoms of concern. I’ve just talked to the doctor about the risks with the surgery especially as if releases hormones during surgery and I’m terrified! Should I just wait..no urgency now right?
So a CT Scan I did a few weeks ago led to an incidental finding of Pheochromocytoma. Because of the size of the tumor; I’ve been advised that taking it out is most ideal. It is however not an emergency; I am not exhibiting any symptoms of concern. I’ve just talked to the doctor about the risks with the surgery especially as if releases hormones during surgery and I’m terrified! Should I just wait..no urgency now right?
Welcome, @parve, hearing the risks of surgery is always terrifying because physicians are obliged to tell you all the potential risks (and rightly so). Did you also discuss the potential risks of not doing surgery or the benefits of surgery?
Welcome, @parve, hearing the risks of surgery is always terrifying because physicians are obliged to tell you all the potential risks (and rightly so). Did you also discuss the potential risks of not doing surgery or the benefits of surgery?
Thanks, we did the surgery on Monday (6 days ago) and I’m going for my review tomorrow. Anyone able to share how long it took them to recover (and travel internationally)?
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@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
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2 ReactionsDon't endocrine surgeons perform adrenal surgery? Yes, but unfortunately, a recent publication by several endocrine surgeons showed that endocrine surgeons in the United States perform fewer than 3 adrenal operations per year on average--this clearly does not make them the "best". They concluded that 5 adrenal operations per year would make somebody "high-volume". I would let a surgeon operate on me if I knew the surgeon performed 5 of these operations per year. You must ask your surgeon the obvious question: "How many adrenal operations did you perform in each of the last 3 years?". If they can't look you in the eye and give you a satisfactory answer, then please, seek a second opinion. For most of you, this means you will need to travel, but let's face it: few people know anybody that had an adrenal operation. Wishing you all the best of health.
Dawn
I am in Florida and my adrenal mass grew from 3cm to 4cm in 8 months. They are recommending taking it out. The hormones are normal and they cannot be sure with the CAT scan. They do not do the 24 hour urine here. I am scheduled for surgery however I am wondering if I should have that test and where I can go for it here in Florida. I am very far from Mayo clinic and live in Boynton Beach.
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1 Reaction@janfam - the 24 hr test was one I believe they told me only Mayo does— it was sent to Mayo Rochester and it showed the percentage of it being cancer vs noncancer, or a pheochromocytoma- it showed all kinds of hormone levels— it was a good test- but in the long run I don’t know how helpful it was in diagnosing- because I still don’t have a diagnosis. My mass is much smaller than yours- on 1.8 and has been that size for a few years- so it’s much more stable than yours, and I just found out this week that the adrenal board reviewed my case here at Mayo and they recommend it being removed because it’s a pretty simple procedure with little risk. I would just recommend finding a surgeon who removes adrenal masses regularly- try one of the university hospitals near you, or bigger centers. But I would think growing that fast most are going to say remove it. Take care!
Thank you! I am having surgery here at The University of Miami for May 17. I think if mine was your size and that stable I would not do surgery. Are your hormone levels normal?
@janfam , Yes. My hormones all normal. But my ct scan and mri show a very lipid poor mass- they can’t determine if it’s just lipid poor adenoma or a “silent” pheochromocytoma based on the scan- we have been watching and scanning every 6 months for a while… size is stable so I am not sure yet what I will do. Best wishes for an uneventful surgery and speedy recovery! Lots of positive wishes coming your way! Keep us updated on how it goes!
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2 ReactionsThank you so much!
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1 ReactionSo a CT Scan I did a few weeks ago led to an incidental finding of Pheochromocytoma. Because of the size of the tumor; I’ve been advised that taking it out is most ideal. It is however not an emergency; I am not exhibiting any symptoms of concern. I’ve just talked to the doctor about the risks with the surgery especially as if releases hormones during surgery and I’m terrified! Should I just wait..no urgency now right?
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3 ReactionsWelcome, @parve, hearing the risks of surgery is always terrifying because physicians are obliged to tell you all the potential risks (and rightly so). Did you also discuss the potential risks of not doing surgery or the benefits of surgery?
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3 ReactionsThanks, we did the surgery on Monday (6 days ago) and I’m going for my review tomorrow. Anyone able to share how long it took them to recover (and travel internationally)?
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4 Reactions