1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

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.

Turkey | @tomrennie | Feb 28, 2023

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 24x7. 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.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 27, 2023

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/

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hmsinclair | @hmsinclair | Feb 26, 2023

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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 26, 2023
In reply to @amybevkep "Hi. Glad to have friends on the subject. Just had surgery-ilioectemy, lymph nodes were cancerous. New..." + (show)
@amybevkep

Hi. Glad to have friends on the subject. Just had surgery-ilioectemy, lymph nodes were cancerous. New net in liver. On my way to MD Anderson for 2nd opinion as to protocol. Have good attitude!

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Hello @amybevkep and welcome to Mayo Clinic Connect. I'm glad that you found this forum. It can be so helpful when you are dealing with NETs to talk with others going down the same road. Getting a second opinion is always a good idea and can provide guidance for further treatment, if needed.

As this is a new diagnosis for you, could you share a bit about the discovery of the NETs? For example, were you having symptoms that led to the testing and discovery of the problem? What is your current medical team suggesting as follow-up treatment?

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amybevkep | @amybevkep | Feb 26, 2023

Hi, recently diagnosed. Glad to have a mentor!

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amybevkep | @amybevkep | Feb 26, 2023

Hi. Glad to have friends on the subject. Just had surgery-ilioectemy, lymph nodes were cancerous. New net in liver. On my way to MD Anderson for 2nd opinion as to protocol. Have good attitude!

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beech18bob | @beech18bob | Feb 25, 2023

Hi @sderose, thanks for the like and hug. It wasn’t that I was trying to avoid the Octreotide injections rather I decided I wanted a second opinion before beginning them, based on: first, from what I was reading on this NET Group, I didn’t seem to have the typical NET metastatic symptoms (night sweats, diarrhea, etc); second, I was a prostate cancer support group leader for 12 years and always urged newly diagnosed guys to get a second opinion as to treatment methods and third, I was a caregiver for my wife as she fought cancer and learned to always question and be very involved. My upstate NY cancer center assigns an RN Navigator to each patient (very helpful) and she had already determined that the combination of Medicare and my secondary health insurance (Hartford Life) would pay for the Octreotide treatments, although they were not going to be three / day rather once a week, I believe. I’m still symptom free, thank goodness.

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sderose | @sderose | Feb 25, 2023
In reply to @beech18bob "Followup answer: My invasive surgery (I’m a relatively healthy 80 year old man) was for a..." + (show)
@beech18bob

Followup answer:
My invasive surgery (I’m a relatively healthy 80 year old man) was for a small bowel obstruction on July 1, 2022. It was “laparotomy general surgery” (large incision). The surgeon removed a well-well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum.
Staging: pT2, pN1, pMx. I came home on July 10. For 6-8 days at home I had night sweats and then they stopped. I have had no other symptoms since then, no diarrhea, weight loss, eating or sleeping problems and no pain. I feel fine other than some arthritic back pain that isn’t new. Twenty-five years ago I had prostate cancer and a radical prostatectomy. I have been cancer free since then and remember as a PCa support group president advising newly diagnosed PCa men to strongly consider second opinions concerning treatment options. Fortunately I took my own advice or I might currently be undergoing unnecessary Octreotide treatments. I appreciate the NET Group postings as I have read them since my diagnosis and learned a great deal about NET. It's a very important service about this uncommon cancer.

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You mention Octreotide and ability to avoid so far. This has been recommended for me but cost prohibitive despite Medicare and supplemental insurance. Not too interested in giving myself 3 injections a day either. What made you want to avoid Octreotide?

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Merry, Alumni Mentor | @merpreb | Feb 25, 2023
In reply to @dpepsi247 "Hello. I am Angela and I am from NE Iowa. When I was thinking of things..." + (show)
@dpepsi247

Hello. I am Angela and I am from NE Iowa. When I was thinking of things I wanted for my 50th birthday, a carcinoid tumor definitely was not on my list! It has really been a whirlwind process the last few months. I am not sure when I was first diagnosed with this tumor, but it became very real when I was told I needed to have surgery! In my mind I was thinking “ok, I’ll schedule it a few months out so I have time to accept it. “ I said I wanted to put if off as long as I could and was told, “Ok, your surgery is in 3 weeks. I have never had major surgery so it was a double whammy when I found out I was having the lower lobe of my left lung removed.
I am one moth out from surgery now and feeling good.

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Hi Angela! I would really like you to get ahold of copies of all your tests and scans and reports and keep a journal of your journey. We have 3 weeks to help you get ready for major surgery.

Have you done any research about the type of cancer that you have?

lol, not my kind of present for a 50th either. What else did you get?

Do you live near Decorah? They have live bald eagle cams. Do you know of them?
https://www.raptorresource.org/birdcams/decorah-eagles/

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firepowr | @firepowr | Feb 25, 2023
In reply to @dpepsi247 "Hello. I am Angela and I am from NE Iowa. When I was thinking of things..." + (show)
@dpepsi247

Hello. I am Angela and I am from NE Iowa. When I was thinking of things I wanted for my 50th birthday, a carcinoid tumor definitely was not on my list! It has really been a whirlwind process the last few months. I am not sure when I was first diagnosed with this tumor, but it became very real when I was told I needed to have surgery! In my mind I was thinking “ok, I’ll schedule it a few months out so I have time to accept it. “ I said I wanted to put if off as long as I could and was told, “Ok, your surgery is in 3 weeks. I have never had major surgery so it was a double whammy when I found out I was having the lower lobe of my left lung removed.
I am one moth out from surgery now and feeling good.

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I’m from NW Iowa! So glad you are feeling good!!

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