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.

pattirushing | @pattirushing | 2 days ago

I had some small lung nodules noticed on a scan 2 years ago and was being monitored yearly. 3 grew and were biopsied. One was a typical carcinoid and another was a carcinoid. The third was a granuloma. I saw a surgeon who declined to operate as he would need to remove an entire lung and I sm not having symptoms,

The tumor board recommended SBRT on the 2 carcinoids. I have some other very small nodules that they suggest I start octreotide for.

I have been discussing my plan since November 2022 and they would like to start next week. It will be 5 treatments.
I
I am still not having any symptoms. This has been such a confusing experience.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago
In reply to @pattirushing "I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable...." + (show)
@pattirushing

I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable. Am going to have SBRT radiation as recommended by my cancer team. Has anyone had this?

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Hello @pattirushing and welcome to the NETs discussion on Mayo Clinic Connect. If you are comfortable sharing more, how long ago were your lung carcinoids diagnosed? Were you having symptoms that led to the diagnosis?

We have a discussion group on Connect where you can meet others who have lung carcinoids. Here is the link to that discussion group,
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
As you read the posts in this discussion, feel free to ask questions or make comments by clicking on the "Reply" button.

Here is a link to some information from Mayo Clinic's website about SBRT radiation,
https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794
Do you have a date yet for the beginning of the radiation treatment? Has your cancer team given you an expected duration of treatment?

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pattirushing | @pattirushing | 3 days ago

I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable. Am going to have SBRT radiation as recommended by my cancer team. Has anyone had this?

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1 reply
pontiac | @pontiac | 4 days ago
In reply to @hopeful33250 "Hello all, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes..." + (show)
@hopeful33250

Hello all, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4. It has been a while since I have heard from you. Let’s pull up in a circle and check in with each other. Do any of you have any special concerns that you would like to share? What about any new treatments or test results? The issue of Neuroendocrine tumors had a lot of publicity in February. If you learned something new that you would like to share, let’s do that as well. I’m looking forward to hearing from you. Teresa

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Constant battle with hypoglycemia caused by excess insulin even after Whipple procedure. My blood sugar is dangerously unstable, have yet to find anything that helps.

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ptk1776 | @ptk1776 | Mar 12 8:27pm

No, I am not getting any treatment currently — just regular CT scans. And I did not get an ileostpmy. I lost about 16 cm of ileum and 18 cm of ascending colon, but the surgeon connected the parts and it mostly functions like normal. The only lingering problem is I have to deal with bile acid malabsorption, for which I am getting treatment.

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judylong | @judylong | Mar 12 1:57pm
In reply to @colleenyoung "@judylong, I wanted to check in with you. Did you decide to get a second opinion?..." + (show)
@colleenyoung

@judylong, I wanted to check in with you. Did you decide to get a second opinion? What is your treatment plan?

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In process of getting a Dototate petscan to see if others tumors have it within the next two weeks. If it is just the one, I guess it will be surgery and if more than the one, treatment TBD. Have followup appointments with both thoracic surgeon and neuroendocrine specialist. (I had endoscopy and colonoscopy last week–all good). Thank you for keeping up!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 11 7:39pm
In reply to @ptk1776 "Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in..." + (show)
@ptk1776

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.

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Great tips, @ptk1776. Are you currently on treatment? May I ask, do you have an ileostomy?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 11 7:36pm
In reply to @rnelson63 "Hi, 59 yr diagnosed with Pheochromocytoma or paraganglioma. The doctors are trying to find somewhere that..." + (show)
@rnelson63

Hi,
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.

Thank you

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@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?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 11 7:31pm
In reply to @judylong "I just got the pathology results --Neuroendocrine tumer- NET/G1/Typical Carcinoid. I had a 9 mm left..." + (show)
@judylong

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?

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@judylong, I wanted to check in with you. Did you decide to get a second opinion? What is your treatment plan?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 1 4:57am
In reply to @tomrennie "I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I..." + (show)
@tomrennie

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.

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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?

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