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Welcome to the NETs Group! Come say hi.
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?
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I was recently diagnosed (this week) with a Neuroendocrine Tumor in my lower lung and one in my liver. I am being referred to Mayo Clinic. I know very little about these tumors as I am just beginning this journey. I thought it would be best for me to join a group of people who are going throue ugh this type of experience to get answers and provide support to others where I am able to do so, Thank you for allowing me to join you.
@katballoo, welcome. I moved your message to this discussion:
- Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/
I did this so you can easily meet other members of the NETs support group, including those who have GI NETs or NETs of the stomach like @hopeful33250, @kathryncd @margaret12 @wdd18054 @lupitaromero @pavlina60 @harley4650 and more.
You also mentioned that you will be traveling to Mayo Clinic, Rochester on your own. You will find many useful discussions to help you plan your trip in the Visiting Mayo Clinic support group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/).
See these helpful discussions in particular:
- First visit to Mayo and traveling alone: Winter advice? https://connect.mayoclinic.org/discussion/first-visit-to-mayo-and-traveling-alone-winter-advice/ (although you won't need winter advice 🙂
- First Visit to Mayo Clinic: How do appointments work? What to expect? https://connect.mayoclinic.org/discussion/new-internal-med-patient/
- Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors? https://connect.mayoclinic.org/discussion/has-anyone-used-mayo-clinic-in-rochester-minnesota-for-carcinoid-tumors-the/
Hello,
I was diagnosed in March '22 with neuroendocrine atypical carcinoid cancer. I had a partial lung resection and a small tumor removed. Since then I have had four rounds of chemo and am now getting an injection every month of Octreotide. Soon, I hope, I will start an oral chemo medication, Everolimus. Although my scans have shown no new tumors, I have multiple, very tender, small tumors that are the same cancer but don't show up on scans because of their size. (The surgeon removed one during the lung surgery and the biopsy showed same cancer.) Has anyone else had these tumors? My oncologist is looking for an oncologist who might specialize in this but no luck so far. Any info will be greatly appreciated.
Many thanks,
LA Renn
Chapel Hill, NC
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1 ReactionI will follow up when I get home and get the information from my doctor.
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2 ReactionsNewly diagnosed with NET - Stomach
I am a 64 year old woman. The doctor discovered the NET during an endoscopy/colonoscopy. It was not recognized as an NET during the procedure. It was only after labs had come back that it was discovered. I don’t know much about it yet, but I’m going to Mayo in a week for more testing. They have not scheduled surgery so I am assuming it must be small and hasn’t metastasized at this point. Nonetheless, I am a little nervous. I’ll be traveling from western South Dakota by myself. Has anyone else faced this alone? And do you think I will have problems getting around the Mayo Campus? I am also disabled and unable to walk long distances.
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2 ReactionsI'll look forward to hearing about what your doctor says. I hope that you are able to get some relief.
Will you post with any other questions? I would really be interested in knowing what your doctor suggests for the itching.
Yes I will follow up with my doctor. I had the itching before my pain crisis that put me on this wild ride.
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2 ReactionsHello @hollywood817 and welcome to the NETs discussion group on Mayo Connect. I see from your post that you are new to the NETs diagnosis. I'm glad that you found this forum.
I would like to invite other members (@sophiarose @mkmn @cu2 @pjsheridan2022 @jay1225 @spartan @sturns @trivia @kim1965 @dbamos1945) who also have liver NETs to share their experiences with you.
You mentioned that you are having monthly injections. Are these monthly injections being used to treat the symptoms of carcinoid syndrome, such as diarrhea, etc.?
You also mentioned that you will also be having PRRT. Is there a schedule for when this treatment will start?
Hello @monkey5333
Regarding the "itching all over" I'm wondering if you have asked your doctor about this. If not, please do so. Not being a medical professional, I do not know if it is related to the tumor, it could, of course, be related to a medication that you are taking.
When did the itching start? Is it in close proximity to any of the meds you are taking. Will you follow up with your doctor?
Hello @keeper3102
As it has been a while since you last posted and I was thinking about you and wondering how you are doing. Has any chemotherapy or other treatment been recommended? Will you post an update when it's convenient for you?