1. < Neuroendocrine Tumors (NETs)

So many questions about weather or not I have Carcinoid Cancer/NETS?

Posted by ecmoandrrt @ecmoandrrt, 5 days ago

Hello all. My Info. (Retired 2022. ECMO Specialist Perfusion/Registered Respiratory Therapist and 35 years in Critical healthcare)
Severe Asthma(environmental) my whole life. Never smoked. A glass of wine now and then. Had a Gastric Sleeve in 2013 and lost over a 120 Lbs. in ten months. Have not gained all that weight back. And still have a huge restriction. Have had other health issues and been intubated quite a few times over my life.
I'm turning 69 next month.
Since July of 2024 I have had severe burning pain throughout my body 24/7/365. Also have "red" skin on chest, face and neck when it really hits me hard. To the point I have to use my MDI. My insurer is Humana Gold plus/medicare. So have to get referrals for everything. And It's taken a while(months) because Dr shortage in my area. So I have seen PCP, Endodoctrinoligist, Rheumatologist, Neurologist(2 Drs), Dermatologist. Derm cant help me and thinks I have Carcinoid. Rheum found out I have RA in hands and feet and is working with Endo. 1 Neuro Dr thinks I have Carcinoid. Just saw another Neuro Dr yesterday with more blood work who thinks it might be something that's not Carcinoid. I have had many "bullets" taken of blood. Like over 40 bullets taken.
Thyroid is ok(my Mother had Hashimoto's) and I had a Ultrasound of thyroid. The Carcinoid blood work doesn't show Carcinoid. My Endo Dr says it can still be normal and you have tumors. And Endo wants me to have MRI with and without contrast of pelvic region and chest because she suspects Carcinoid. Insurance denied MRI of pelvic and only get a chest???? Endo is working on CT also.
I'm going to Neuro because I have "foggy" brain. It's all there it just takes a while to get it out so maybe Aphasia(he is ordering a MRI of brain)? So one of the tests he ordered yesterday was B12(because if to low can affect brain). My B12 has always been low and ok. Now? Just got results and my B12 is 1505. Wow that's high and with my experience in OR could I have Liver tumors/Carcinoid? My BP is high because I'm in so much pain!!! My Diastolic is high which I'm afraid of a stroke! Which they treat with BP meds and not the cause???? WTH!!! Pain is excruciating. I need narcotics!!
Is this much pain normal?
I'm seeing my PCP next week and Endo, Rheum and Neuro in July.
(Pics shown of my head at 0300 with the red.)

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dbamos1945 | @dbamos1945 | 5 days ago

@ecomandrrt: I would suggest asking your doc for 24hr urine test to rule out seratonin elevation. Also try to get a Gallium PET scan with&without contrast, which will pinpoint all tumor locations and have data to determine treatment options.
Carcinoid Syndrome can visualize similar to your red face, neck, etc. and you would want a cardiologist to evaluate Echo test for ejection fraction percentage and heart valve deterioration. I wish you could get a 2nd opinion from a Neuroendocrine Tumor Medical Oncologist - an expert to verify diagnosis and suggest best treatment. Be persistent with health insurance provider because getting treatment sooner than later could be fatal.
I am a Neuroendocrine Tumor Cancer patient and felt I needed to alert you to urgency to receive diagnosis and treatment available.

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1 reply
lindabees | @lindabees | 4 days ago

Wow. You have been through quite alot but clearly are tenacious which is a good thing when it comes to getting diagnosed and receiving the proper treatment. I agree a 24 hour urine test would be good to get. That's really frustrating that insurance denied the pelvic mri. If you can afford it, maybe see about paying for it out of pocket as that is best for visualizing anything in the liver.
If not maybe at least a CT of that area

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ecmoandrrt | @ecmoandrrt | 3 days ago
In reply to @dbamos1945 "@ecomandrrt: I would suggest asking your doc for 24hr urine test to rule out seratonin elevation...." + (show)
@dbamos1945

@ecomandrrt: I would suggest asking your doc for 24hr urine test to rule out seratonin elevation. Also try to get a Gallium PET scan with&without contrast, which will pinpoint all tumor locations and have data to determine treatment options.
Carcinoid Syndrome can visualize similar to your red face, neck, etc. and you would want a cardiologist to evaluate Echo test for ejection fraction percentage and heart valve deterioration. I wish you could get a 2nd opinion from a Neuroendocrine Tumor Medical Oncologist - an expert to verify diagnosis and suggest best treatment. Be persistent with health insurance provider because getting treatment sooner than later could be fatal.
I am a Neuroendocrine Tumor Cancer patient and felt I needed to alert you to urgency to receive diagnosis and treatment available.

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Hi.
Thanks for all the information.
My 5-HIAA Urine was 1.4
Calculated Total (E+NE) was 18.
Creatinine, Urine was .58
CHROMOGRANIN A, LC/MS/MS was 85.
I agree with Pet scan. Fighting insurance.
I live outside of New Orleans and Ochsner Hospital on Jefferson highway has one of the best cancer centers. And an excellent NETS program. Lucked out with that.
Seeing PCP this Thursday.

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1 reply
ecmoandrrt | @ecmoandrrt | 3 days ago

Whoops I spelled whether wrong. Lol. ;]

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dbamos1945 | @dbamos1945 | 3 days ago
In reply to @ecmoandrrt "Hi. Thanks for all the information. My 5-HIAA Urine was 1.4 Calculated Total (E+NE) was 18...." + (show)
@ecmoandrrt

Hi.
Thanks for all the information.
My 5-HIAA Urine was 1.4
Calculated Total (E+NE) was 18.
Creatinine, Urine was .58
CHROMOGRANIN A, LC/MS/MS was 85.
I agree with Pet scan. Fighting insurance.
I live outside of New Orleans and Ochsner Hospital on Jefferson highway has one of the best cancer centers. And an excellent NETS program. Lucked out with that.
Seeing PCP this Thursday.

Jump to this post

@ecomandrrt: Hope you are open to a few comments. It helps me to have a list of concerns, questions of best treatments, side-effects of medication/treatments, surgery(or radiation) vs. chemo, other specialist consults needed, doc recommendations for prognosis with &without treatment, etc. This allows me to get info to help me make decisions in a short time span. It also might be beneficial to have a relative or friend with you during the appointment who you can verify info post-appointment.
NET specialists are needed now to formulate your successful treatment plan. I will be thinking of you on Thursday!

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