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Welcome to the NETs Group! Come say hi.
Neuroendocrine Tumors (NETs) | Last Active: Nov 29, 2024 | Replies (429)Comment receiving replies
Hello, My name is Lenora and this is my first time commenting on the NETs website. I have been reading the comments which have been most informative. I was diagnosed in September 2021 with Stage four NETs with metastasis to the liver, bones, lymph nodes and pleura. I had a liver biopsy in Sept. which showed grade 2 (closer to 1) cells, well differentiated. It has taken several months and tests to get to this point. This has been the most difficult part for me. A mesenteric node was found on an MRI which was done in 2019 and the recommendation was to watch and wait. In the interim I was being treated for GERD, H.Pylori infection and gastritis.
The treatment with PPIs, antibiotics, antacids helped initially, but my symptoms persisted. The pandemic was also a factor in a delayed diagnosis. I believe in self-advocacy and insisted that something else was wrong with me. I suspected that I had cancer somewhere. It wasn't until the results of the 24hr urine were reported that my GI specialist suspected Carcinoid Tumors which now showed up in an enterography. I guess better late than never!
The timeframe from diagnosis to treatment has been relatively short. For that I am grateful. I am being followed at Fox Chase Cancer Center in Phila. by someone who specializes in these cancers. I am receiving first line treatment with Octreotide which I self-administered for three wks and now get once a month in long acting form. I will have a CT scan in February 2022 to see how things are progressing. My fear is that there will be little or no positive change only because my symptoms persist and are very episodic.
I would be grateful to speak with someone who may have had a similar experience.
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Replies to "Hello, My name is Lenora and this is my first time commenting on the NETs website...."
Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it? He has a spot on the tail of his pancreas and is many lesions on his liver, also the lymph nodes are involved in his stomach. He also has some bulged disc's in his back which is where the liver lesions were discovered. We sent him for an mRI for his back. He has had 7 back surgeries, he is ex-military. He is being treated with Sandostatin once a month. His pain levels are out of control? Now it seems to be going down his hip and leg? I don't know if it from the back or the cancer? His pain is worse than it was with back surgeries? I am speaking to his Dr. on zoom chat Tues. he had a Copper? PET scan? Maybe I do not know clinical terms but that is what we were told. We are going to Moffitt in Tampa, does anyone have any advice?
I would like to join the others in welcoming you to the NETs discussion on Mayo Clinic Connect. It is so good that you are reaching out to others with NETs, it helps to ease that "all alone" feeling that comes with a rare diagnosis like NETs.
It sounds like you have received some good information from reading the posts on this site. I would also like to invite you to a NETs support group that meets on Zoom. It is held on the first Thursday of each month, beginning at 5:30 EST, and originates from Mayo's Jacksonville campus.
It is led by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh.
Closer to the time of the meeting a registration link will be provided and once you register, you will be sent the zoom link.
My experience with NETs has involved three surgeries of the upper digestive tract with no apparent metastasis at the present time. My only treatment has been surgery with no other therapies.
I can understand your concern if your symptoms continue to persist even after beginning the monthly injections. I'm guessing that you are experiencing carcinoid syndrome symptoms such as diarrhea, flushing, etc.
Is this the case?
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Welcome Lenora, I'm so glad that you posted about your NETs story after following the discussions for a bit. @tomewilson @gulzar @megansims also have experience with octreotide. Are you tolerating it well?
@tatteesmom3, did you meet with the surgeon this week? How did it go?