Just diagnosed: Metastatic NETs. Treatment?

@helloitsme

Welcome to Mayo Connect. I certainly can understand your feelings with this rare diagnosis. All of us with a diagnosis of NETs have had similar feelings! You were so wise to insist on a PET scan. I commend you for being proactive and not simply accepting the results of the CT scan. Many of us with NETs, like you, have zero symptoms. I have had three surgeries for NETs (over a 20-year period) and never had symptoms.

I am glad to hear that you have an appointment at Mayo soon. It is so important to have a consult with a NET specialist. General oncologists often do not have the training and information on treating NETs.

I would encourage you to meet some of the other members of the NETs discussion group. Here you will see many patients, like yourself, you are learning about their diagnosis and supporting each other.

--Welcome to Our New Group
https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

As your Mayo appointment is coming up next week, do you have a list of questions to ask the doctor?

Thank you so much for replying, I feel better already after hearing about your experience. I was feeling so all alone and scared. Yes, I have a long list of questions written down and I'm hoping not to drive the Dr. crazy with all of them! I'm sorry that you have had to experience this horrible disease, but am extremely happy that you have done so well with your treatments. You have given me hope. Thank you from the bottom of my heart.

If you would like some more information and support, I would encourage you to sign up for Mayo's monthly NETs support group meeting. It will be meeting Thursday, May 4, via Zoom. There are usually about 20 people who attend and there is about 30 minutes when the members of the group talk and ask and answer questions.

Here is a link with more information on how to register
https://connect.mayoclinic.org/comment/850430/

I hope to see you there!

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is rare, it's typically better to have NETs than the more common types of cancer. NETs is often a more of a chronic and treatable cancer. I take octreotide for my lung NETs/DIPNECH and it's very similar to lanreotide. I get one injection in the upper glute every four weeks. No big deal. I started taking two other meds for breast cancer two months earlier so it's hard for me to assign side effects to each med, but I can tell you that I've stayed on all three meds for over two years now. Well worth it. My side effects that I believe were added or got worse when I added octreotide were fatigue, some hair thinning (but not baldness), elevated blood sugar (treatable), lowered blood pressure and heart rate (treatable). Even with all three meds, I still have good quality of life and am not complaining. Octreotide greatly improved my respiratory issues.

I suggest the website http://www.LACNETS.org for lots of info on NETS including presentation videos from lots of NETS specialists. When you attend their live presentations through youtube you can also ask questions. It's not a treatment facility, but a large NETS support organization. Best of luck to you.

https://www.youtube.com/watch?v=Fe6C7oAsQBs
Here is a good overview of NETS

My husband was diagnosed with NETs 5 years ago, had surgery and had been followed every 3 months. His latest PET scan in October showed new activity and a single leision on his liver. No symptoms of any significance. Started Lanreotide in November and worried about side effects. But we've been happy to discover the shots have been easy. Had some weird joint aches about 2 weeks after the shot the first 3 times, but since then he feels like the only possible side effect had been an increase in gas. Nothing tough to live with. He's about to get his next PET and we are hoping and praying for a good result! Hope all goes well with you!

Welcome to the NET site! Hope you find the group helpful and supportive. I don’t have your exact diagnosis but do have metastatic insulinomas (which are a type of NET)- pancreas and liver - currently surgery is not an option - I am on octreotide which is similar to Lanreotide. I have been on Lanreotide in the past - unfortunately, I had an allergic reaction and had to stop taking it but was on it for about 8 months. The side effects are not bad, at least for me - more annoying than anything. Some mild nausea and GI side effects. My oncologist gave me a prescription for zofran to have in the event of nausea. I only experienced nausea the first day or 2 and then it would resolve. I wish you the best in you journey! Again, welcome to the group!

Good morning to (hello it’s me) I was diagnosed Dec. 2022.. started in small intestine and metastasized to the liver. Currently going to Mayo in Jacksonville Fl. Surgery was also not an option. Started Lanreotide in February, I’ve had 3 shots so far. Side effects of the shots for me were minimal, diarrhea the first day after, and depending on what I eat stomach cramping and gas..I have a MRI scheduled in June to see if the Lanreotide was effective in slowing the spread/growth of the tumors.. may you have a blessed day.
There is a Virtual Neuroendocrine support group meeting every first Thursday of the month , along with this chat room I have found it helpful

Hello sorry to hear about your diagnosis but glad you found this forum.
I was diagnosed with NETs last August with tumor on my lung and mediastinum non operable. I did chemo and radiation it reduced the tumors by 50 percent. On Monday I will get my 3rd lanreotide injection.. sometimes you will hear them referred to as somatostatins in the group. I will do PET scans quarterly to monitor the progress.

What I have found is that the diagnosis is much like a death notice and you experience some of the same emotions at first. Denial, bargaining, depression, acceptance, Just know afterwards we focus on staying healthy and managing the affects of the treatments.

Ronny Allan has a couple of great sites to visit. He is a long term NET survivor that has gathered all the information you will be seeking. Check him out for sure.

NETRF.org is another great resource for this cancer. They will send you a small book that help you understand the options available.

My advice is to stay as healthy as you can. Eat small helpings, get good exercise as treatments allow, and build a good support team around you. Trust in the experts actively listen, reassess what’s important and keep your focus.
NETs is a marathon not a sprint.

Blessings to you and your loved ones. From my home to yours.

CEB

Welcome @helloitsme, so glad you reached out to this group. I’m also glad to hear you’re headed to Mayo in Phoenix. It was my “home away from home” every eight weeks from April to October 2021, and I just can’t say enough good about it. I went specifically for PRRT treatment for unresectable tumors in my stomach and some small ones scattered about my body. I’d had ten inches of my small intestine removed in 2018 and eleven inches removed from my large intestine in 2019. These were tumors that never showed up on CTs, but then caused blockages. Although I’ve been on Octreotide shots every 28 days since April 2018, they were mainly designed to control the symptoms (especially the diarrhea and flushing). So it was time to seek further treatment.
I would fly down from Albuquerque on Tuesday morning, visit with the docs and/ or nurse practitioner in the afternoon, spend a good chunk of the day Wednesday receiving the treatment, go out to dinner that night with my sons, go back Thursday morning for my Octreotide shot, then fly home. We always stayed at the Hampton Inn near the hospital as it was reasonable with special hospital rates, they offer breakfast, and they have a shuttle to the hospital.
But I’m wondering if you looked into MD Anderson right there in Austin. They, too, offer treatment for Neuroendocrine tumors. I’m not certain if they have PRRT.
I continue to have issues with diarrhea (thank you Imodium) but I view it like any other chronic illness - you control it and live your life. When you can, start an exercise routine as it will help mentally and physically. You’ll also figure out what you can eat without setting your stomach off, and eat nutritionally. Remember, these are slow growing tumors.
Good luck to you and please continue to reach out and keep us updated.

@helloitsme I had my pre chemo visit at Mayo Phoenix yesterday.
Had some blood work done and reviewed the results with one of my NET specialist oncologist doctors. I am healthy enough to start my 9th cycle of CAPTEM chemo today. Yay!

I was diagnosed with stage 4 NET pancreatic cancer that spread to my liver on August 22nd 2022. The diagnosis was terrifying. I had been getting progressively sicker for over 2 years before that. The NET tumors were blocking my pancreas and liver from functioning properly. I am 57, 5'10", diabetic, and went from 280 pounds to 140 pounds. Now, those tumors are half their original size. The over 200 lesions on my liver have stabilized or shrunk. My diabetes isn't really an issue anymore. My wife and I just went for a three mile hike. I am a healthy 175 pounds. My one NET specialist oncologist, I actually have 2... yes 2, recently told me that she didn't think that I was going to make it when we first met. That is how close we've become. Complete honesty. She is family. My wife eventually told me that she felt the same way too. But, the NETs and my Mayo care team, really saved my life. It is inoperable. So what. The chemo can still make me feel crappy. So what. It is only a couple of days. And, I won't have to take it every month forever. I was so scared and sick when my cancer journey began. My Mayo care team, led by the amazing Dr. Sonbol, have taught me so much. What makes them so special, they listen. They care. They are human. After Dr. Sonbol told my wife and I the diagnosis, he was telling us "our" options and things "we" might do. I asked him to dumb it down for me. He was using words that I didn't understand. I also told him that I learn best with pictures. He pulled out a blank piece of paper, drew a picture of what was going on, explained it, then showed us the scans and related them to his picture. It started to make sense.

Please lean on me for help. Lean on the support team here. Covid delayed my diagnosis and treatment. You were smart enough to get the PET scan. You are so far ahead of where most of us start. Please, please, please relax. At least try.