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 I all just joined.
I have just been diagnosed with a stage 3 slow growing NET pancreatic tumor which i have seemingly had for some time.
Can i live a few years with this with the correct treatment
I am pretty fit 78 year old.
Thanks for your help in advance.
Hi all, many of you in the NETs support group have met @ahtaylor. @hopeful33250 interviewed her for this week's Member Spotlight. Learn more about what @ahtaylor finds special about connecting with fellow members on Mayo Clinic Connect, how she find balance in life, and what food she just can't resist.
– Giving it All You've Got: Meet @ahtaylor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/
I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I am a Mayo patient. My care team is amazing. I started my 6th CAPTEM chemo cycle today. My year end scans showed the cancer isn't spreading and the three large tumors all decreased in size. My wife has been awesome. This isn't easy. Over time through trial and error, we have learned to manage meds and my body better. I am 57. I was told that I will have to continue to manage the cancer the rest of my life. It isn't going away. I appreciate the honesty of my care team of 6. I have a patient portal where I can send or receive messages 24×7. I also have a dedicated hotline to call. The hardest part initially is understanding all of the medical lingo. When I first met the doctor, I told him that I didn't understand anything he was telling me. Dumb it down for me. He asked if I liked pictures. My wife said we both do. 3 pages of doctor drawn pictures and 15 minutes later, the doctor answered all of our questions. I started chemo a few days later. Comments, questions, please share.
Hello…I am a new member here and I am scared. And was recently diagnosed with neuroendocrine tumors of the esophagus and liver so far. My pet scan is scheduled for this coming Monday and I pray I don't light up like a Christmas tree.
The tumor on my esophagus is low grade, and the tumor on my liver is more advanced. I will have more information next week after pet scan.
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Hello @annct and welcome to the NETs discussion group on Mayo Clinic Connect. As a newly diagnosed, this is a good place to be where you can get information and support from other members who are also diagnosed with NETs.
I look forward to hearing from you again. If you are comfortable sharing more, how was it that you were diagnosed? Were you having symptoms that led to scans or was this an incidental finding? Has surgery or other treatments been suggested yet?
Hi, I am living in Adelaide. South Australia. I went through chemo with non Hodgkins lymphoma a few years ago, and now after 2 major operations am dealing with N E T S. Firstly in my ileum, and successfully removed, and then 2 years later, after a body scan, and removal of tumour material outside my intestine, and further inoperable tumours , very small and stage 2 in stomach lining. I am having Sandostatin lars injections monthly and so far have had 4 treatments. I am having blood tests, and another scan in April to see if the hormone inhibiting injections are keeping the tumours from growing. Would love to hear from anyone out there dealing with similar problems .
Hello @tomrennie and welcome to the NETs discussion on Mayo Clinic Connect. It sounds like you have an incredible medical team at Mayo! That is good news that the cancer is not spreading and that some of the tumors have been reduced. You must be so pleased with these results.
I love the way you asked your doctor to "dumb it down." I may use that at some time in the future. The fact that your doctor took the time to draw pictures is great. You are correct when you say that cancer is something that needs to be managed for the rest of your life. So true!
I have had three surgeries for NETs in the upper digestive tract and mine were found "incidentally." In other words, I wasn't having any symptoms, they were found during a routine upper endoscopy.
I would be interested in knowing how your cancer was diagnosed. Were you having symptoms that led to the diagnosis? What type of tests/scans were done to determine that this was NETs?
I just got the pathology results –Neuroendocrine tumer- NET/G1/Typical Carcinoid. I had a 9 mm left upper lobe pulmonary nodule discovered through previous test six months ago. Petscan showed no abnormal activity. I will be seeing my oncologist on Tuesday— I have researched many options for treatment — I am seriously considering finding a doctor who is more specialized since all information seems to indicate that this is a rare cancer. Any opinions?
@judylong, I wanted to check in with you. Did you decide to get a second opinion? What is your treatment plan?
59 yr diagnosed with Pheochromocytoma or paraganglioma. The doctors are trying to find somewhere that does an MIBG scan, so they can see where it is located.
Adrenal glands where clear on CT scan.
Not much information on metastasis I guess it’s a wait and see. I’m bit nervous.
After reading about others on here I feel fortunate at this time. Sending all my prayers and positive energy to all of you.
I was wondering if anyone has had this tumor and what was that like in the treatment of it.
@rnelson63, you may be interested in these related discussions:
– Pheochromocytoma: Anyone being treated for an adrenal mass? https://connect.mayoclinic.org/discussion/pheochromocytoma/
– Advanced metastatic paraganglioma diagnosis https://connect.mayoclinic.org/discussion/advanced-metastatic-paraganglioma-diagnosis/
– Paraganglioma / Carotid Body Tumor Question https://connect.mayoclinic.org/discussion/paraganglioma-carotid-body-tumor-question/
Have you had anymore clarification on your diagnosis and next steps? How are you doing?
Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.
Great tips, @ptk1776. Are you currently on treatment? May I ask, do you have an ileostomy?
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