Welcome to the NETs Group! Come say hi.

I'm having itching as well. No one seems to know why. I asked if it was because of the tumors but I haven't gotten an answer...

Deb1955: Welcome to the group! My wife was diagnosed in April 2022, and although we are nearing the end of a 9 month cycle of chemo (pills), with surgery coming up. We are fortunate to have a great multi-disciplinary team of NET Specialists ( a must), that has brought us along this trail of winning this battle against cancer. I remember how devistated we were after diagnosis. Now it's time to fight, we are here to try to help you along the way, I read this Forum every day and usually learn something new that will assist us, so make sure you take advantage of that. As the wife and say everyday, "We Got This!" 🙂

Hello folks, currently being treated at City Of Hope. 10 cm tumor incidentally found on GI work-up involved with left kidney and SMA. Was resected in late 2016. Diagnosis is advanced metastatic paraganglioma with mets to bone, liver, lungs and nodes. Genetic screening shows mutation in sdha which I'm told makes the case even more rarer than what is already a seldom seen presentation. Anyways tough to take, been very healthy my entire life. Tennis, cycling, 4 marathons. But hanging in there and feel very blessed for all the attention received from the medical people.

hello group i have just joined i was dx with a pancreatic neuroendocrine tumor.

Welcome @vblaney38, I moved your post to this introduction discussion in the NETs support group. There are several members here who are from Florida and may be able to help locate a carcinoid specialist in The Villages in Florida.

You may also wish to consult with a specialist at Mayo Clinic: http://mayocl.in/1mtmR63

In the meantime, @vblaney38, I'd be interested to know a bit more about your carcinoid story. When were you diagnosed? Where is your tumor located? Have you had any treatment?

Welcome @sueannsellers. I'm glad to hear that you are being referred to Mayo Clinic for consultation about your recently diagnosed neuroendocrine tumors in the lung and liver. Which location? MN, FL or AZ?

Oh, you may have noticed that I moved your message to our welcome and introductions discussion here:
- Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

I did this so you can read previous posts and get to know some of the members. I'd particularly like to tag fellow NETs members like @hopeful33250 and those who have lung and liver NETs like @melmangen @surbhi1 @tufan @gapsc @aliatl @osiejay26 @popkorhn to name a few.

Many patients with NETs have shared that it can be a long journey to get a proper diagnosis. How were you diagnosed?

Hello @katballoo,

I'd like to join @colleenyoung, in welcoming you to the NETs discussion on Mayo Connect. I'm glad that you found this forum. When first diagnosed with any type of cancer it is natural to feel anxious, but when the diagnosis is NETs which are a rare cancer, there is often an added sense of aloneness and/or isolation as very few people in our usual circle of family and friends have heard of this diagnosis.

My NET was also found, like yours, through a routine upper endoscopy and was found in the upper digestive tract (duodenal bulb). I had no symptoms to indicate that it was there. Many of us have had these NETs discovered incidentally, meaning that they were found but not anticipated by symptoms, etc. The biopsy is the only way most doctors know for sure that a NET exists.

I so admire your willingness to travel to Mayo. They have excellent NET specialists there and the consultation should be most helpful. The links that Colleen suggested will undoubtedly be helpful to you. There is also a Concierge service at Mayo which may be able to assist you with one-on- one assistance. Please contact the Concierge in advance of your appointment to see what services they can line up for you on the day of your appointment.

You do not mention if you were having symptoms prior to the discovery of the NET. Were there symptoms or were the endoscopies just routine check-ups?

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