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.

ronregency | @ronregency | Dec 17, 2019

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

megansims | @megansims | Jan 1, 2020

In reply to @hopeful33250 "Thanks for your update, @megansims. I am glad to hear that your symptoms have improved with..." + (show)

@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!

Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2021

In reply to @gaylejean "Dr. Edward Greeno at the U of M is a neuroendocrine specialist" + (show)

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?

avawein | @avawein | Sep 7, 2021

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.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 17, 2021

In reply to @avawein "Just wanted to comment on this thread as I kind of had a similar experience. In..." + (show)

Hello @avawein

You posted about finding some"hotspots" on your liver after having a CU64 dotatate. I was wondering how you were doing. Do you have any biopsies or treatments planned for the future?

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

avawein | @avawein | Sep 18, 2021

In reply to @hopeful33250 "Hello @avawein You posted about finding some"hotspots" on your liver after having a CU64 dotatate. I..." + (show)

Hi Teresa,

Thanks for following up. I have surgery scheduled for October 21st to have the liver tumors removed. My doctor put me on octreotide acetate (200 mcg) 3x/day to see if it would relieve my carcinoid syndrome symptoms. I felt great after the first injection - I believe it did help with my symptoms, but about 1.5 hours post injection I started having some pretty strong pain in my upper abdomen all the way around to my spine. I had my gall bladder removed 5 years ago but the pain felt just like previous gall bladder attacks. Unfortunately, I had to stop the octreotide and will discuss it with my doctor on Monday. Would be curious to know if others had a reaction like that to the octreotide.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 18, 2021

Hello @avawein

I appreciate knowing the date of your surgery. I will be thinking (and praying) for you that all goes well. Do you know what type of surgery you are having? Is it a liver resection, Radiofrequency ablation (RFA), Microwave ablation, or something else?

I've never taken Octreotide so I cannot address the question you have about those side effects, however, perhaps another member will be able to respond to that.

I'll be interested to know what your doctor has to say about that at your Monday appointment. If you are comfortable doing so, will you post an update after that appointment?

Colleen Young, Connect Director | @colleenyoung | Sep 20, 2021

In reply to @avawein "Just wanted to comment on this thread as I kind of had a similar experience. In..." + (show)

Hi Ava,
Thanks for adding your experience with Copper Cu 64 Dotatate (Detectnet). As you mentioned it was only recently approved by the FDA in Sept 2020.

Copper Cu 64 Dotatate has a high clinical sensitivity and specificity, which helps clinicians provide a more accurate treatment approach for NETs patients.

For anyone interested in learning more, here's information from Mayo Clinic and the FDA approval
- FDA Approves Copper Cu 64 Dotatate Injection for Somatostatin Receptor–Positive NETs https://www.onclive.com/view/fda-approves-copper-cu-64-dotatate-injection-for-somatostatin-receptor-positive-nets
- Copper Cu 64 Dotatate (Intravenous Route) https://www.mayoclinic.org/drugs-supplements/copper-cu-64-dotatate-intravenous-route/description/drg-20502439

May I ask what led your care team to order the Cu 64 test instead of gallium? Is it being used as the new standard where you receive care?

avawein | @avawein | Sep 20, 2021

In reply to @hopeful33250 "Hello @avawein I appreciate knowing the date of your surgery. I will be thinking (and praying)..." + (show)

Hi Teresa,

Thanks for your concern and prayers. Yes, it will be a liver resection. The tumors are in the same section of the liver so I'm grateful for that.

My oncologist suggested I give the octreotide acetate another try at a smaller dose. I did that this afternoon and felt pretty good - no pain around the liver - so will continue taking it.

Will answer Colleen's question now.

Best!

avawein | @avawein | Sep 20, 2021

In reply to @colleenyoung "Hi Ava, Thanks for adding your experience with Copper Cu 64 Dotatate (Detectnet). As you mentioned..." + (show)

Hi Colleen,

I've had 2 gallium 68 PET scans, one before my right hemicolectomy surgery in 2019 and one several months afterwards. The second scan showed I was all clear of NETs except for a very tiny lymph node in my neck. My oncologist measures my serotonin every 6 months and it never went down to within the normal range. From Jan. to July it went from 450 to 727. He knew there had to be a tumor somewhere producing the serotonin. The CT scans showed no new tumors so he ordered the CU 64 dotatate scan and that test picked up the two sneaky tumors in my liver. My oncology surgeon, said they were lit up pretty bright on the scan. The last serotonin test I had in August, just 6 weeks after the one in July, showed my serotonin went up to 852.

Both the gallium 68 and cu 64 dotatate are great tools, the gallium 68 is my oncologist's go-to test, but I'm glad he thought to use the cu 64 in my situation.