Neuroendocrine tumor and carcinoid tumor

I was diagnosed with Neuroendocrine tumors in my liver and small intestines back in December 2022. Also carcinoid syndrome (facial hot flushing). I go to Mayo Jacksonville Florida. I received 3 landreotide injections and the facial flushing continued. In May the injection was changed to octreotide and within 3 days the flushing stopped. I will find out at the end of June if the treatments were successful in stopping the spread.. There are many factors involved with what is recommended for treatment. Are you seeing a Dr. that specializes in Neuroendocrine Tumors?

I haven't gotten that far yet, just going through my Gastroenterologist and waiting for my NET Scan. And trying to educate myself on wat to do. May I ask about the facial hot flushing?

Not sure I’m explaining it good but it is neuroendocrine tumors that secretes serotonin into the blood. Mostly tumors found in your GI track, and the percentage at people who get it is very low.

Yes...mine were found in the lesser curve of My stomach. My Gastroenterologist wants to check my pancreas to make sure its ok but I also have a cyst ..?...in my liver . Seen on my last Scan

Hello @makebadaniels73 and welcome to the NET Support Group on Mayo Connect. I see that you have already connected with @vinnie694 who has shared with you based on his experience. I can understand your wanting to learn more about this rather rare type of cancer. As it is rare, it is not something that is easily understood. The Carcinoid Cancer Foundation (CCF) is a good place to learn more. Here is their website,
https://www.carcinoid.org/for-patients/
Here are some Youtube videos which are helpful in understanding NETs/carcinoids,
https://www.bing.com/videos/search?q=carcinoid+cancer+foundation&qpvt=carcinoid+cancer+foundation&FORM=VDRE. These videos are taught by experts in the field of NETs/carcinoids.

I have had three surgeries for carcinoids in the duodenal bulb. They were several years apart (2003, 2005 and then again in 2016). At this point, there does not seem to be metastasis.

Have you had a 68 Gallium PET scan? This is the latest and most effective tool in detecting NETs (which often do not show up in traditional scans and/or MRIs). Here is some information about this scan, which is generally found in major health care centers, like Mayo Clinic or perhaps a university medical school.
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
If you care to share more, I'm wondering what symptoms led to the diagnosis of NETs/carcinoid.

Thank u so muchhh!! I'm currently waiting for a PET Scan and wat lead me to where I am today started year b4 last with an autoimmune..chronic atrophic autoimmune gastritis. Nothing over the counter was helping my bloating, full, gassy feeling I had for over 10 yrs. Now I'm here. I was having difficulty with breathing at times and pain in my abdomen area, not able to use the restroom for days at a time. I've had 2 polyps in the past and my latest biopsy which I had March 3, 2023, caught these 2 tumors. I also have thyroid issues, Hyperthyroidism. I'm so new to this yet have been searching for answers for so long. I thank God for My Gastroenterologist for diagnosing me and finding these rare, cancerous tumors. I'm also due to get my pancreas looked at for she is concerned on where it is all triggered frm. So I came here to further educate myself while I fight thru and support others while looking for the same in return. I appreciate any and all info, thank u so much again.

I had my first visit today with one of the smartest, intuitive doctors I’ve ever been evaluated by. This doctor understand fully what I’ve been dealing with for so many
years with regard to the PPGL
that I was told by endocrine fellows at my local hospital that I had. But the big difference between those doctors and the doctor I had the opportunity to meet with
today is like day and night. This doctor laid out what needs to be done, and I feel vindicated for once. They pulled a lot of blood today (7 tubes), set up the next appointment, which will be a
tela health appointment, so I
won’t have to go back to NYC,
and I will have an appointment with a geneticist closer to where I live, so I won’t have to go into the city
for that either. I feel hopeful, and I haven’t felt that for a long time.

Hello @katiedid

I'm so glad that you found a good doctor who understands what you are going through. That makes such a difference, doesn't it?

You said, "This doctor laid out what needs to be done, and I feel vindicated for once." Did he say specifically, what the treatment plan would be?

Yes she did; she said the 24 hr urine collection that I finished on 5-3 would be
sent to the Mayo in Minnesota, and turnaround time is pretty
quick, and then Medicare
would most likely approve
the need for a scan to locate the tumor. MSK is renowned as a center of excellence in so many disciplines, and I asked her if I could still be treated there if it learned
that my tumor is not cancerous, and she replied that MSK treats
people with cancerous as
well as non- cancerous conditions. Thanks for your interest.

I’ve read a lot of medical journal articles regarding these PPGLs, and the best possible treatment is surgical
removal, when that’s possible;
Of course the patient volume at MSK means you will likely face delays with regard to scheduling future visits to their facility such as was the
case I experienced yesterday
after I returned home, and made my telahealth appointment, I expected maybe a 2 month appointment, but I was shocked it wouldn’t be until October 5th, because the doctor told me during yesterday’s visit that people can die from this disorder; then why am I having to wait
4 months before my next visit.
And this is just a telahealth visit. I don’t get it, I’m going to turn 70 in just 4 weeks, and it would have been the ultimate birthday gift to finally have this behind me. I apologize if I’m coming off as
someone who isn’t grateful for the recognition of a disorder that is long overdue, but so many medical personnel never even considered the possibility that
I could be that 1 in a million
patient so afflicted by a disorder that I left my job (postal letter carrier), and went on SSD at 40 years of
age back in 1998. My life has
been changed forever because
of this illness. I was a thin young lady , 115 and 5’ 6”, and
no primary I came before, ever, for one minute, that it was strange for me to have these elevated bp measurements with my slight
build; I come from a strong medical background, and the
secondary cause probability would have been echoing in my ear.