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) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Aug 5, 2019

Hello @megansims

I can certainly understand your concern about your symptoms and also about your intermittent 5-HIAA levels. Have your serotonin levels been checked?
I have had three surgeries for NETs (carcinoids) of the upper digestive tract. In the evaluations you mentioned, you did not state that you have had an upper endoscopy. Has this been done, or just the colonoscopy?

Has anyone suggested genetic testing for MEN1? Here is a link to some information about it, https://www.mayoclinic.org/medical-professionals/endocrinology/news/recurrent-primary-hyperparathyroidism-in-a-patient-with-multiple-endocrine-neoplasia-type-1-a-case-from-the-endocrine-teaching-clinics/mcc-20439158.

Have the lung nodules been determined to be benign? If so, how was that diagnosis made?

Will you post again? I look forward to hearing from you.

Teresa, Volunteer Mentor | @hopeful33250 | Aug 5, 2019

If you are able to get an appointment with Mayo, I would be interested in knowing how that goes.

megansims | @megansims | Aug 8, 2019

In reply to @hopeful33250 "If you are able to get an appointment with Mayo, I would be interested in knowing..." + (show)

@hopeful33250 Thank you! We are able to get an appointment in October or November. We are just trying to sort out child care. Do you know if Mayo has any options for patients coming in from out of town? Thank you for your post! My Primary wants me to have a bronchoscopy and also see Mayo for possible parathyroid/MEN testing. He does not want me to have the bronchoscopy locally though in case of a Carcinoid Crisis if the little guy is hiding in there. The EGD was normal. That is where things are at right now. The U of MN has become a totally dead end. Need to get to Mayo!

Teresa, Volunteer Mentor | @hopeful33250 | Aug 8, 2019

Hello @megansims, I am so pleased that you will be able to visit Mayo in the near future. I'm looking forward to hearing about your experience as most people are very happy with the care and the attention they receive from Mayo doctors and staff. You asked about options for patients coming from out of town. Here is a link to Mayo's concierge services, specifically designed to help out of town patients find lodging, etc.

https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

megansims | @megansims | Oct 27, 2019

Just recently went to Mayo for continued evaluation. The Oncologist there agreed that my symptoms were consistent with Carcinoid Syndrome and my Biomarkers were also suggestive of a NET, but he was genuinely perplexed that a tumor could not be located. I have had all negative scans. The only thing that they found was in my lungs. Initially, all of the Chest CT results came back showing old granulomatous disease (Histoplasmosis) based on Mediastinal Lymphadenopathy and calcification. He was concerned, however, about a large (2.9 cm x 2.4 cm) calcified subcarinal mass that did not totally fit with the expected pattern of calcification seen in Histoplasmosis. The Pulmonologist said it is too dense to biopsy. The Oncologist said that only 30% of Lung NETS show on Gallium so he is getting a FDG PET CT. That will be in 2 weeks. Is it ever possible that a NET could form in an area that already had calcification from a previous infection? The Pulmonologist said it was one of the biggest mediastinal calcifications he had seen in 37 years.

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2019

Hi @megansims, I moved your message to the previous discussion that you started in the NETs group, so that others can read the history of your diagnosis journey. I'm relieved that you're were able to go to Mayo for evaluation with NETs specialists. It sounds like you are dealing with specific complexities that really need the attention of neuroendocrine cancer experts. I'd also like to invite @tomewilson @andre1221 @joanney @gapsc and @mollie59 into this discussion.

Megan, will you return to Mayo for the FDG Pet scan?

Teresa, Volunteer Mentor | @hopeful33250 | Oct 28, 2019

In reply to @megansims "Just recently went to Mayo for continued evaluation. The Oncologist there agreed that my symptoms were..." + (show)

Hello, @megansims

I am so glad to have you posted about this and that you received help at Mayo. It is important to seek out the best NET specialists and you have done so. I admire your proactive approach to obtaining a diagnosis.

One of our members, @andre1221, had a similar diagnostic dilemma and he can share with you how he has been helped by doctors at Mayo in Jacksonville.

Will you post again as you learn more?

andre1221 | @andre1221 | Oct 28, 2019

In reply to @hopeful33250 "Hello, @megansims I am so glad to have you posted about this and that you received..." + (show)

Good morning. I see Dr. Jason Starr at Mayo Jacksonville, Fl. In the last two years, they have done extensive work ups to include exploratory laparotomy. I’m currently on Lanreotide 180mg X 21 days. Double butt darts suck but they are working lol. Also on 300 mcg of Octreotide as needed. I’m happy to help you or any others on this path. So sorry for what you and the others are dealing with. ~ André

Tom Wilson | @tomewilson | Oct 28, 2019

In reply to @megansims "@hopeful33250 Thank you! We are able to get an appointment in October or November. We are..." + (show)

My wife and I have been to Mayo 16 times in the past 4 years for two surgeries and many office appts. In face, we will be there next Monday all day. If you have specific questions about staying in Rochester and getting to appts., please let me know. Its super easy and convenient. How far is your drive to Rochester.

megansims | @megansims | Oct 30, 2019

In reply to @colleenyoung "Hi @megansims, I moved your message to the previous discussion that you started in the NETs..." + (show)

Colleen, Thank you for the reply! It has been a frustrating road to say the least. I was very impressed with our care at Mayo but it has been tough to still not have specific answers. It is hard to have an 'expert' tell you that he is perplexed! I am having the FDG-PET performed at my local facility with the images going to Mayo for review! We are not planning to head back to Mayo until next Spring for follow-up, although we are doing a phone follow-up after the results of all the extra testing, so things may change after that!