Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hello hopeful, I just received the link recently. So, I will apply and feedback. You're kind
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I'm wishing you well and hoping that an appointment will come available and you can get some good advice and help, @netpatient.
Since you have metastasis to the bone, I'm assuming that bone pain is the most difficult symptom you are having.
Bone discomfort in the humerus and pelvis. Yes! I can't move without support. Thanks hopeful for giving me hope
Hello @kate12345 and welcome to Mayo Clinic Connect. While I'm sorry to hear of your diagnosis of a Pancreatic NET, I'm glad that you found a place to get support. I related to your words, "I found this forum while obsessively Googling…" I found Connect the same way. In 2016, I was facing my third surgery for carcinoid cancer in the duodenal bulb and was beside myself. I was looking for support groups by googling NETs and Carcinoid and came upon Mayo Connect. Here is a link to my first post, https://connect.mayoclinic.org/discussion/i-have-recently-been-diagnosed-with-my-third-neuroendocrine-tumor-has-anyone/.
It was great to meet others who had this rare disorder and who had lived through it and shared with me about their journey.
You sound like you are approaching this diagnosis with a great attitude in that you want to connect with others and hear their stories. Since you do not mention symptoms of Insulinoma, I'm assuming that the NET to the pancreas has not affected your blood sugar levels. That is always a good thing.
Here are some other links to Pancreatic NETs that you might find helpful, https://connect.mayoclinic.org/discussion/pancreastatin-level-at-1500/. I would like to invite @elm60 to this discussion as she discusses her Pancreastatin level (I don't think you mentioned that level). She also talks of some of her symptoms.
Are you currently seeing a NET specialist? This is very important. General oncologists are not always the best to treat more rare forms of cancer. Here is a listing of NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
If you don't mind sharing more, what symptoms were you having that led to this diagnosis?
I am also a PNET patient diagnosed in 2017. I had a partial pancreactomy and then a second surgery in 2019 at Mayo Jacksonville. I had two primary tumors in the head and tail. My KI67 in both were <3% Grade 1 well differentiate, 0/35 lymph nodes. My Pancreastatin is well above the range at 637 but my NET Specialist said that this is just one of the tools they use in connection with scans to monitor post surgery ( or if they cannot locate the primary tumor)
I just had my 30 month MRI and labs and all is stable. I would like to invite you to our Facebook group Neuroendocrine Cancer Zebras. We have a monthly zoom meetings every 1 st Thursday. We have our a topic every month, speakers and Net Specialist that also may join in to answer questions. It’s a great group and I have really learned a lot about NETs from this group!
Please keep us posted on your 1/7 Gallium scan. Are you currently experiencing any flushing or diarrhea?
I will be keeping you in my thoughts and prayers and see what the experts are planning to do going forward. You are not alone and I am glad you found us. ! 💜
The day after Thanksgiving, I had really bad epigastric pain with nausea and vomiting. I went to the ER and they did a gallbladder ultrasound, which showed something in the pancreas. They then did a CT and saw the tumor. I haven’t had any pain or further symptoms since that day. The tumor presses against my stomach and the duodenum, so maybe the big Thanksgiving meal contributed to the symptoms, or maybe the drinks I had (I don’t usually drink) induced a mild pancreatitis. Regardless, I have fortunate been fine since and have never had any symptoms to indicate that this is a functioning NET.
I definitely agree with you that I need to see a NET specialist because when I saw the GI oncologist, he told me he doesn’t even like to call NET’s “cancer” and at the end of the appointment he said, “You’re not going to die from this.” Meanwhile, we haven’t even staged it yet and don’t know if it’s metastasized beyond the lymph nodes, and the tumor is only borderline resectable, so I thought that was an awfully cavalier statement to make. I have an appointment with a NET specialist on 1/12, the week after my scan. I just want to get some treatment started! The waiting is hard.
Thank you for welcoming me to the group. I’ll keep you posted!
@elm60, thank you for your reply and sharing a little bit of your story with me. I’m glad to hear your 30-month MRI and labs were stable. That must be such a relief. I’m not on Facebook, but perhaps I’ll join to participate in that group. Also, to answer your question, I haven’t had any flushing or diarrhea or any other symptoms of a functioning tumor. They found the tumor when I went to the ER with abdominal pain and vomiting the day after Thanksgiving, but I’ve had no problems since then.
Kate, if you prefer not to go on Facebook, you are welcome to continue to connect with members here and to join the monthly NETs support group hosted by a Mayo Clinic social worker. The meetings are held online on Zoom monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time. @elm60 can tell you more about the monthly group too.
Here's more info about the upcoming meeting:
– Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-108/
I am so glad to hear that you will be seeing a NET specialist in January. The idea that NETs are not really cancer is a very old-fashioned concept and I agree with you that his statement was somewhat "cavalier." You definitely need to consult with someone who can approach your cancer with an open mind and the latest treatments.
I see that you had a difficult time with pain after a Thanksgiving dinner. Yes, alcohol and large meals are best avoided if you have any problem at all with your pancreas. You might find some helpful information from the National Pancreas Association. Here is the link to their website https://pancreasfoundation.org/.
Hi Kate12345. It’s good to hear you are not having any syndrome issues. I love Colleen’s comment about just joining the zoom meetings, that would be fantastic! Let me know if you have any more question! I will
Be glad to help in any way!
Hi, newly diagnosed NET in left lower lung. Going to see surgeon this coming week. Anyone been diagnosed in relation to the lungs? Any advice, next steps? Thank you 🙏🏻
Hello @tatteesmom3 and welcome to Mayo Clinic Connect. I can certainly understand that you would want to post with others about this. When I had my first NET in 2003, there weren't very many discussion groups about this rare type of cancer. It is so very helpful now that there are people talking about this and sharing it with others.
We have some other members who have dealt with NETs in the lungs. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
Mayo Clinic also has an online support group for people with NETs that you are free to join. They meet on the first Thursday of each month from 5:30 to 7 p.m. EST. People with NETs from all over the country join in this meeting. Every other month there is a guest speaker, a medical professional who speaks about NETs and can help answer questions.
Are you currently seeing a NET specialist or a general oncologist? As NETs are rare, it is a good idea to be seen by a NETs specialist for a consultation. Many NET specialists will see patients for an initial consult and then work with their local oncologists for treatment.
If you care to share more, what symptoms led to your diagnosis? Have you had a Gallium scan?
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