Possible NET with No Evidence of Tumor: Mediastinal Mass

Posted by megansims @megansims, Aug 4, 2019

Hello All! I have had flushing for several years with alcohol, stress, emotions, heat/exercise, and some other foods. I also have cyclical diarrhea. In the last year, I have also had nighttime awakenings with diarrhea, tachycardia, GERD, and feelings of anxiety/adrenaline rush. Last Fall I added palpitations, regular tachycardia, more flushing, dizziness, headaches, and EXTREME fatigue to my list. I am 43, mother of three youngins, have been super healthy prior, and was on no medications. I had a workup that included Urine 5-HIAA which came back high. I then had two more elevated urine 5-HIAA tests, three elevated Chromogranins (not on PPI’s), and completely negative CT/MRI/Gallium PET/EGD/COlonoscopy. I have some lung nodules, and thyroid/parathyroid nodule, and an elevated PTH with normal calcium. No one seems to know what to do with me, My Endocrinologist at the U of MN is just suggesting 6 month follow-up. I have a referral to MAYO but am not sure how I am going to get there, find child care, etc. Wanted to say hello and see if any of you have similar experiences. I was able to speak with a NET specialist on the phone and he recommended a serum 5-hiaa, pancreastatin, and neurokinin A at a minimum. Hoping I can get a doc to order those. Really hoping to make it to Mayo in November.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

@megansims

Thanks so much! It was a really great experience and I loved meeting Dr. THor- he was outstanding, but I only wish he was not perplexed by me! We had a really nice stay at an Air b'n'b in Chatfield. It was a great place for the kids to run around! We really enjoyed Rochester and thought it was a great town! We live about 4 1/2 hours away and have three little ones, so it is quite an adventure to come down, but it was all very coordinated and seemed pretty easy considering all the testing that we had done. Thanks so much!

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Hello @megansims, it is so good to hear from you and know that you had a good experience at Mayo. I'm glad that your travel arrangments and lodging worked so well for you and your family.

Did Dr. Thor run any additional tests that you had not had done previously? When do you expect to get the results?

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@hopeful33250

Hello @megansims, it is so good to hear from you and know that you had a good experience at Mayo. I'm glad that your travel arrangments and lodging worked so well for you and your family.

Did Dr. Thor run any additional tests that you had not had done previously? When do you expect to get the results?

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Teresa, Thanks! He ordered a couple of repeat CT scans, had many of my previous images re-read, ordered an FDG-PET scan, and a genetic NETest from WREN laboratories. He is waiting to see the results of the WREN test. He also mentioned that many lung NETs do not show up on the traditional Gallium scan so that is why he added the FDG PET scan. He is also having me do a home 'provocation' test for Carcinoid Syndrome (do not try this at home disclaimer!). He wants me to provoke the flushing with a glass of red wine, start Octreotide 3 times a day, then after 3-4 days, drink another glass to see if I have the flushing or not! He said it was the only time that he ever prescribed a glass of wine for a patient! He is puzzled by the labs- some of the Chromogranin levels have been high (3 of them) and 1 has been normal, and the same with the 5-HIAA (3 of the urine have been high, 1 normal, and 1 high Plasma, and 1 normal). He feels like the tumor should be visible, but he also felt that the symptoms are very suggestive of the syndrome.

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Dr. Edward Greeno at the U of M is a neuroendocrine specialist

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Have many of you had the WREN lab NETest? I just had it done and the results were 67%. They still have not found a tumor but I am scheduled for an FDG-PET on Thursday.

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@megansims

Have many of you had the WREN lab NETest? I just had it done and the results were 67%. They still have not found a tumor but I am scheduled for an FDG-PET on Thursday.

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Hello @megansims,
I'm not familiar with this test but is it a genetic test of some type? I'll be interested to hear about the results as well as the FDG-PET on Thursday,
Will you post again?

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My wife did it 3 separate times over a year or more when WREN covered all the costs during their rollout. The results were erratic. Her specialist thought they were interesting, but that’s all. It didn’t help guide her care plan.

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@hopeful33250

Hello @megansims,
I'm not familiar with this test but is it a genetic test of some type? I'll be interested to hear about the results as well as the FDG-PET on Thursday,
Will you post again?

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Thanks @hopeful33250 ! The PET was negative, I did a 5-day trial of short acting Octreotide and felt amazingly better with no symptoms, so the doctor is pondering starting me on the long-acting even without tumor location. They repeated the genetic test on the Octreotide, just to see what it shows. The mass in my chest is double in size than it was several years ago, so they are talking with thoracic surgery to see what to do about it. It sits in the subcarinal space nestled between my aorta and my pulmonary artery- ick.

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@megansims

Thanks @hopeful33250 ! The PET was negative, I did a 5-day trial of short acting Octreotide and felt amazingly better with no symptoms, so the doctor is pondering starting me on the long-acting even without tumor location. They repeated the genetic test on the Octreotide, just to see what it shows. The mass in my chest is double in size than it was several years ago, so they are talking with thoracic surgery to see what to do about it. It sits in the subcarinal space nestled between my aorta and my pulmonary artery- ick.

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Thanks for your update, @megansims.

I am glad to hear that your symptoms have improved with the short-acting Octreotide. You said the doctor is thinking of starting you on the long-acting med even though there is no tumor location. You did mention, however, the mass in your chest. Has this been not been determined to be a NET? Were any biopsies done on this mass that you said has doubled in size?

For you and all other NET patients, I found a website where you can download some great information about NETs free of charge. Here is the link,
https://netrf.org/for-patients/guide/?

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Mayo Clinic. If you re diagnosed with something I believe they can help you. Everyone from California that I know who went there (Rochester, Mn)have extended their life to present day when other institutions sent them home to die. I m one who can attest

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@hopeful33250

Thanks for your update, @megansims.

I am glad to hear that your symptoms have improved with the short-acting Octreotide. You said the doctor is thinking of starting you on the long-acting med even though there is no tumor location. You did mention, however, the mass in your chest. Has this been not been determined to be a NET? Were any biopsies done on this mass that you said has doubled in size?

For you and all other NET patients, I found a website where you can download some great information about NETs free of charge. Here is the link,
https://netrf.org/for-patients/guide/?

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@hopeful33250 Thanks for the reply! I guess the Pulmonologist at Mayo presented my case at the Lung Tumor Board and none of the surgeons wanted to biopsy or remove the mass because they do not think it is likely that it is a NET, although the Mayo Oncologist said he cannot absolutely rule it out. When we return in April/ May, we will meet with a CardioThoracic surgeon to discuss it with them and I will also be getting a Gallium PET/MRI which should hopefully tell them more about it. THanks!

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@gaylejean

Dr. Edward Greeno at the U of M is a neuroendocrine specialist

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Hello @gaylejean

How are you doing with finding a NETs specialist? I hope you have found a doctor who can help you.

Will you post an update?

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Just wanted to comment on this thread as I kind of had a similar experience. In July I went in for my 6 month scan and everything was stable, however, my serum serotonin went way up. I few weeks later my doctor, who had been using the gallium scans, tried a new scan with copper. Cu64 dotatate I think it is. It picked up two positive hotspots in my liver. The spots were seen on CT scans but it was assumed they were cysts. The gallium did not pick them up. See if you can get a scan done with the copper and not gallium. The copper was just approved for use in 2020 so still fairly new.

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