Welcome to the NETs Group! Come say hi.

Welcome @littlecrown1966. You're not alone in having a long road to diagnosis with misdiagnosis along the way. NETs is a sly one. @andre1221 @gapsc @nathanb1979 @titansmistress @ahtaylor have been there too.

To help you connect with others who have experience with PRRT, see these related discussions where fellow NETs members are talking about treatment with peptide receptor radionuclide therapy (PRRT) with lutetium Lu 177 dotatate (Lutathera):
- Interested in hearing people's experiences with PRRT https://connect.mayoclinic.org/discussion/prrt-treatment/
- PRRT for NETs: Questioning whether I should continue or not https://connect.mayoclinic.org/discussion/prrt-for-nets/

When do you head to Mayo Clinic? Do you know if you are a candidate for PRRT?

Of course, Kim. All are welcome to join the monthly NET support group.
Register here: https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi

The next meeting is October 6. See all details here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

Has anyone undergone the treatment i have shown in the attatched screen shot photo?? I am interested to find out more about this treatment, and specifically anyone's experience with it.

Hello everyone!! I am new to the group!! Have been on my cancer journey since April of 2016 when i experienced my first symptoms, and doctors were perplexed, was misdiagnosed for a year. The first nodules were found in my thyroid, and in lymph nodes next to mu jugular vein....thus my first surgery, removal of the lymph node, and thyroid. I have metastasis to other areas of my body....primarily right now in lungs, bronchi...in the lining around my heart, and iliac chain of lymph nodes in pelvis, and possibly liver....i have undergone two additional neck disections...the last a more radical neck disection with removal of 40 lymph nodes from the left side of my neck....multiple of which tested positive for metastasis and evidence of extra-nodal metastasis....while my recovery from last surgery has gone well, scar looks good, i am struggling to regain nerve and muscle function of left arm, shoulder, neck, and face....still have limited mobility, and of course the daily battle with lymp fluid pocketing in chest wall, and shoulder, and back. Self care can be pretty daunting...some days are better and worse than others. I have been recieving care at Sanford in Sioux Falls, SD....but now am to the point where i have been referred to Mayo to explore other options....my case is currently being reviewed. I have done much research, and have learned so much along the way....this is my first time plugging in to a support group, i hope to learn so much more, and look forward to lending support to others as they also are making their way on their own healing journey...love and peace to you all!!

Is it possible for me also to be included in this NET support group virtually by zoom?

@kim1965

Very tired during chemo cycles but learning each time, things that help. Have found that instant mash potatoes help me eat during chemo better. On off cycle weeks, I camp with my husband and have kayaking recently and biked 16 miles. So going good as can be expected for now. The comment surprised us though, hoping my case also has same positive outlook long term.

Hello @kim1965 and welcome to Mayo Connect. As you know, NETs are a rare type of cancer, and it is always best to seek a consult with a NET specialist. I would encourage you not to let your doctor's remarks devastate you until you seek a second opinion with a NET specialist.

Is it possible for you to have a consult (video if in-person is not possible) with a NET specialist at Mayo Clinic? It would be great to have another opinion. If you would like to contact Mayo for an appointment, please follow this link, http://mayocl.in/1mtmR63.

You are right in that most people with NETs do have good results with the right treatment. NETs are a slow growing cancer and that is good. How are you feeling? Are you able to eat comfortably and have energy?

Is it possible for you to get a second opinion?

I was diagnosed with NET in the Liver with multiple spots, and a mass on my pancreas. I completed 3 cycles of Chemo (pills only), and the MRI showed significant positive results, with the tumors that was mapped in the beginning showing around 50% reduction in both the liver and pancreas. The cancer from the original PET only showed in these two areas. Oncologist and Froedert Hospital in Milwaukee, have started a second round of 3 cycles of chemo (pills), with the plan being to evaluate with another MRI after 6-7 rounds of chemo. All the info that I could research online, states that NET has a high survival rate after 5 years, depending on other factors. During today's oncologist visit, we discussed NET and how other patients with NET are doing that the doctor is treating. I was disappointed to hear that the few he had passed away. My husband and I only found info that showed a very positive prognosis for NET, what are the facts on the prognosis for someone with liver and panceras NET, that is showing the very positive results I have so far. We were crushed hearing the info today.

Basically the Dotatate scan showed no other NET's or cells. The option is to monitor with Cscan or mri with contrast everythree months The NET is 1.7cm by 1.3cm If it hits 2.0cm or larger the NET will be removed. It would be nice to die with the NET not because of the NET.

Hello @heidiwat and welcome to Mayo Connect. I can certainly understand your concern for your son. Cancer in young people is always concerning and as mothers, our adult children are still "our kids." I am glad that you are looking for information and help for him. We all need patient advocates looking out for us.

@jatx25, a Connect member has recently posted about a NET on his appendix. I hope he will join this conversation and share with you, his experience.

You mention that your son will be having a CAT scan scheduled. Is this going to be a Gallium 68 scan? This is a scan that specifically looks for NETs. NETs do not always show up in traditional scans. Here is some information about this scan:

--Gallium Ga 68 Dotatate (Intravenous Route)
https://www.mayoclinic.org/drugs-supplements/gallium-ga-68-dotatate-intravenous-route/description/drg-20312288
Getting a second opinion from a Mayo doctor is an excellent idea. Here is the link to the online appointment site, http://mayocl.in/1mtmR63.

Mayo Clinic also hosts a NETs virtual support group on the first Thursday of each month at 5:30 p.m. EST via Zoom. It originates from the Mayo campus in Jacksonville FL and is facilitated by a Mayo social worker. I have added your name to the notification list so that you (and your son) will be able to register for the meeting. In this support group you will meet many others who have been dealing with NETs and they are more than willing to share their knowledge and journey with you.

Did your son have any symptoms prior to the appendectomy? Is he having any new symptoms now?