Looking to connect with patients diagnosed with NET in NYC
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Welcome @laurell410. I look forward to learning more about you. What type of NETs do you have? How long have you been living with NETs? Did it take a while to get a diagnosis?
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3 weeks ago I had a MRI and it found a tumour on the tail of the pancreas and 3 tumors on the liver. I saw one doctor at Mt Sinai but decided that I would rather seek care at Memorial Sloan Kettering Cancer Center. I am scheduled for a biopsy this Friday 25th. I see a hematologist every 6months because of anemia and she noticed that my platelets have been declining,,she thought that there was an issue with my spleen; but it turned out to be NET
Hello @laurell410, I'd like to add my welcome to you as you have joined the NETs discussion on Mayo Clinic Connect. Those of us with this rare form of cancer find support and encouragement by sharing together our experiences. I have had three surgeries for NETs in the duodenal bulb. The lesion was found incidentally when an upper endoscopy was done. I had no symptoms.
I see that you had a biopsy on the 25th. Have the results been posted yet?
It would be interesting to know what symptoms led to your diagnosis of a NET in your pancreas. Were you have digestive tract problems or low blood sugar?
I look forward to getting to know you. Will you continue to share?
Sorry for the delay in responding but I had hernia repair surgery and still have nausea, Vomiting and very loose oily pencil like stool. The liver biopsy showed well defferentiated , intermediate category 18 and stage 4. As it has metastasis from pancreas to the liver
Hello @laurell410, it is nice to hear from you again. I'm sure you are glad that the hernia surgery is behind you now. Now that your biopsy results have determined a NET diagnosis, I would like to invite you to a NETs support group meeting hosted by Mayo Clinic. It is a virtual meeting, via Zoom, and it is a place where you can meet others with NETs and share experiences, treatments, etc. Here is the invitation for the monthly meeting that will take place tomorrow, May 5:
The Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time by the Florida campus of Mayo Clinic. You can join the meeting virtually using Zoom. Each meeting features an invited guest speaker. Topics include symptom and disease management as well as the emotional, physical, and financial impact of disease.
Please click the link to register in advance for this meeting:
After registering, you will receive a confirmation email containing information about joining the meeting.
Zoom online meeting
@laurell410, You mention a lot of symptoms such as loose stools, etc. that are often related to carcinoid syndrome. Has your NET specialist mentioned the possibility of carcinoid syndrome? I mention this because there are monthly injections that many NET patients receive to alleviate these symptoms.
You might ask your oncologist about these injections to see if they might help you.
I am receiving octreotide injections monthly. They are trying to diagnose the cause of the nausea, vomiting and loose stool b4 starting chemo
I am unable to attend the May 5th group because I am an adjunct professor and I teach Thursday evenings 6-8pm
I'm sorry that you will have to miss the meeting on Thursday. It's good that you are able to work!
I hope that your doctors find an answer to your symptoms before beginning chemo. Are the doctors considering PRRT treatments?
Since you mentioned that you are not able to attend the Mayo support group meetings due to a work conflict, I thought I would send you a link to a podcast that sounds good. Here is the link,
One of the speakers is Dr. Thor Halfdanarson of Mayo Clinic in Rochester, MN.
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