1. < Neuroendocrine Tumors (NETs)

Feeling discouraged and too many specialists

Posted by phoebeghostwriter @phoebeghostwriter, Jan 19, 2022

I’m feeling so defeated tonight. While waiting for my Mayo Clinic appointment, I have continued to lose muscle mass in my arms and legs. I’m bruising easily and the night sweats are unbearable. I have a pain in stomach waking me at night and my oxygen level is dipping. My potassium level dropped and I was given potassium pills at the ER. My blood work came back with low lymphs and high hepcritin. I went to a neuroendocrinologist at Mass General today in hopes that he could at lease get the ball rolling as one of my first symptoms was high cortisol on a previous 24 urine. However I also had elevated 5HIAA back in December but my local Dr thought it wasn’t too out of range then. So I expected more from Harvard. More digging. More expertise. More action. He was only interested in my pituitary. When mentioned my other NET related symptoms he wanted to refer me to a GI doctor. I made a huge mistake. I thought even if we are not sure if it was a suspicious mircoandenoma with MRI he would at least. Run other tests. He said he is only pituitary and did nothing other than give my another urine and more of the same labs not a single NET blood test. He said Cushing takes months to diagnose. He ignored and didn’t even refer me to a NET specialist.No help. No scans. No Care. I don’t know what to do.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 21, 2022

Hello @phoebeghostwriter

I am sorry to hear that you are still searching for answers. If you need to find a NET specialist, here is a link from the Carcinoid Cancer Foundation that lists NET specialists all over the U.S, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. You might see if you can find one that is near to you and then ask for a referral from your PCP if a referral is necessary for your insurance coverage. A GI doctor might also be able to help you at this point.

You said you were waiting for an appointment at Mayo. Has one been scheduled yet?

REPLY
1 reply
phoebeghostwriter | @phoebeghostwriter | Jan 21, 2022
In reply to @hopeful33250 "Hello @phoebeghostwriter I am sorry to hear that you are still searching for answers. If you..." + (show)
@hopeful33250

Hello @phoebeghostwriter

I am sorry to hear that you are still searching for answers. If you need to find a NET specialist, here is a link from the Carcinoid Cancer Foundation that lists NET specialists all over the U.S, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. You might see if you can find one that is near to you and then ask for a referral from your PCP if a referral is necessary for your insurance coverage. A GI doctor might also be able to help you at this point.

You said you were waiting for an appointment at Mayo. Has one been scheduled yet?

Jump to this post

Awe, thanks for the follow up. 🙂 I have a serotonin and chromein G test in progress to see if I’m led in that direction or if it’s Cushing. Once the results come in this weekend I’ll have maybe better direction. With my symptoms all over the place, no one knows what to do with me- high cortisol, low cortisol, RA, weak thin legs, etc. Mayo isn’t scheduled until March.

REPLY
2 replies
cvb | @cvb | Jan 21, 2022
In reply to @phoebeghostwriter "Awe, thanks for the follow up. :) I have a serotonin and chromein G test in..." + (show)
@phoebeghostwriter

Awe, thanks for the follow up. 🙂 I have a serotonin and chromein G test in progress to see if I’m led in that direction or if it’s Cushing. Once the results come in this weekend I’ll have maybe better direction. With my symptoms all over the place, no one knows what to do with me- high cortisol, low cortisol, RA, weak thin legs, etc. Mayo isn’t scheduled until March.

Jump to this post

Mt. Sinai team in NYC with Dr Willin does telehealth after sending all records and cd to them they respond quickly. I have watched their education sessions and complex cases. this is the NET team in Mount Sinai NYC just athought good luck

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 21, 2022
In reply to @cvb "Mt. Sinai team in NYC with Dr Willin does telehealth after sending all records and cd..." + (show)
@cvb

Mt. Sinai team in NYC with Dr Willin does telehealth after sending all records and cd to them they respond quickly. I have watched their education sessions and complex cases. this is the NET team in Mount Sinai NYC just athought good luck

Jump to this post

Thanks for the added resource, @cvb. Are their education sessions available on their website?

REPLY
cvb | @cvb | Jan 21, 2022

yes they are just reference Dt. Willin and net team and their patient caregiver presentations are excellent. They had a lung net one with their lung surgeon Dr. Kaufman who is excellent.

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Pattyd | @patdame | Jan 22, 2022
In reply to @phoebeghostwriter "Awe, thanks for the follow up. :) I have a serotonin and chromein G test in..." + (show)
@phoebeghostwriter

Awe, thanks for the follow up. 🙂 I have a serotonin and chromein G test in progress to see if I’m led in that direction or if it’s Cushing. Once the results come in this weekend I’ll have maybe better direction. With my symptoms all over the place, no one knows what to do with me- high cortisol, low cortisol, RA, weak thin legs, etc. Mayo isn’t scheduled until March.

Jump to this post

Call Mayo daily and also ask to be put on cancellation list. We have been with Mayo since 2002 and have done this many times and quite often our appts get moved up. They don’t mind you calling daily at all. I hope you get seen sooner and that they can give you some answers.

REPLY
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