Newly diagnosed-Primary Malignant Neuroendocrine of Lung

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor. Medication at start was HCT 12.5mg/day, Coversyl 2.5mg/day and Crestor 5mg/day.

First I'll start with a bit of my history. My cancer journey started in 2017 when a close family member was diagnosed with Stage 4 lung cancer that had metastasized to the brain and a previous diagnosis of CLL. Because this family member had no symptoms prior, she urged me to get a CT scan. I was a heavy smoker but had quit in 2000. The first CT scan in the fall of 2017 showed scattered ground glass nodules in both lungs .In 2019, the CT scan showed a spot in my left lung.

In Nov of 2019 I had a let upper lobe lobectomy which revealed a stage 1 lung adenocarcinoma. No treatment required. In June of 2021, another spot was detected , this time in the right lung. My lung capacity was good so I had a right upper lobe lobectomy with pathology showing well-differentiated neuroendocrine tumor, Grade 2 (atypical carcinoid) K1-67 at 16.7% and mitotic index 3/mm sq. Tumor size was 1.4cm, LV1 Stage 11B, pT1 b,pN1, MX. At that time I was under surveillance.

Second follow-up CT scan March 2022 showed multiple rounded hypodense liver lesions and 3 small exophytic sub-centimeter lesions on both kidneys. An MRI in April 2022 confirmed multiple enhancing lesions throughout the liver, most likely metastasis from lung carcinoid tumor. First and second biopsy showed benign liver tissue. Tumor markers Chromogranin A=36 normal and 5H11A 83 elevated. PET scan showed multiple metastatic lesions with the largest in the right hepatic lobe of 1.5cm x 1.2cm. multiple bone lesions on bilateral humeri, sternum, spine and pelvis. Previous PET scan in May 2021 prior to lung surgery showed none of this.

Next test was an Octreotide scan which showed diffuse heterogeneity of octreotide activity throughout the liver and distribution on Octreotide outside the liver was within normal limits. Third biopsy confirmed metastatic Neuroendocrine tumor with K1-67 now at 30%.

In July, I started oral Chemo of Capecitabine and Temozolomide on a 28 day cycle. Capecitabine 1500mg, with food twice daily, Temozolomide 380mg for 5 days, on an empty stomach, and Ondansetron 8mg, 1hr before Temozolomide. After the first cycle, my liver enzymes went very high so second cycle was delayed by 1 week. I was also told to quit taking my cholesterol medication. And Temozolomide dose was reduced by 1/2 to 190mg. All through this all, I have had no symptoms. I am tolerating the Chemo with no side effects.

My first follow-up CT scan Oct,2022 showed slight interval progression of liver metastasis. One lesion went from 1.5cm to 1.8cm and another from 1.2cm to 1.5cm. It was decided that I should continue with current dosage of CapTem. Last CT scan Jan.2023 showed everything was stable.

I am now almost done my ninth cycle of Chemotherapy. I am told that my cancer is treatable but not curable. I continue with no side effects from the cancer or the Chemo. I try to keep a very positive attitude and have a marijuana cookie daily that helps me with any anxiety and also helps me sleep really well. I keep reading about people with NETS, that have had it for a very long time before diagnosis. With me, having no activity showing in 2021 scans and it showing in the 2022 scans, does that mean it was detected early, even though it had already metastasized? With having no symptoms, I don't know what to expect. Should I be looking at a different treatment that may cure it? Or should I just be thankful I don't have any side effects. Before Chemo , I was very active, playing pickleball and golfing. Since starting Chemo, I've basically quit group physical activities because of risk of injury and just go to the gym.

I appreciate any info or advice. Until I found this site, I had no idea of all the different treatments or that NETS affected so many people. KEEP POSITIVE!

It works, there are some harder side effects, but do your research, talk to net specialist, it is part of the plan to hold NET back, each case is different though, my wife had been on it for 10 months now, with minimal side effects. Let me know if any other questions we can help with.

Thank you very much. My current oncologist is very proactive, and suggests the Lanreotide, although I am not symptomatic. What side effects has your wife had?

It’s hard to determine which side effects were due to the chemo (pill version) or the Lanreotide, cause she started both 9 months ago. I would say minor nausea, constipated , little bumps at injection site is normal till medicine dissipates in body.

I have been on Lanreotide for 11 months now, and Octreotide for the previous 13 years. The Octreotide started causing granulomas at the injection site, which are hard, painful knots where the drug was just sitting there rather than dispersing.

Other than that, I manage well with both drugs, with minimal side affects. Bloating, gas, and diarrhea are common for me, but I consider this a fair trade-off as I'm still here!

Hugs to you on this next part of your journey!

Thank you so much! 13 years sounds amazing and makes me hopeful! Something I need, as I am overwhelmed at this point. Hugs to you too!

Hello @dak10 and welcome to the NETs discussion on Mayo Clinic Connect. I can see that you have already met @kim1965 and @kellysg. I am glad that they have shared with you their experiences. I can certainly understand your concerns. Being diagnosed with a rare form of cancer tends to heighten anxiety.

I am a 20-year survivor of NETs. I have had three surgeries (upper digestive tract) beginning in 2003 and the last surgery was in 2016. My NETs were found incidentally, as there were no symptoms but were found on a routine upper endoscopy.
I have only had surgeries; no other treatments were needed up to this point. All of our stories are quite different in terms of treatments.

It sounds like your medical team has been observing this for some time now. Was this lung nodule found incidentally or were you having problems with shortness of breath that led to the original findings?

Hi, my lung nodule was found incidentally. I had a benign lipoma removed from my abdomen, and prior to that surgery a PET scan was ordered and the nodule lit up, they sent me to a thoracic surgeon, he wanted to remove it, stating that sometimes these modules turn to cancer. I declined the surgery and opted for monitoring it by CT scans. The scans were all normal with no growth, one year it was smaller. Scan in 2021 all good, 2022 showed growth, enough for a biopsy. Biopsy came back as Neuroendocrine tumor, was sent to oncology, they said we will do a PET scan and do more blood work in 3 months. The oncologist said as long as I was not experiencing any symptoms, no hurry to do anything. I felt great about that, my family pushed for a second opinion, and the new oncologist specialized in all NETS, she said why wait. Within a week I had a PET scan, MRI of my brain, and more bloodwork. My right lung and right pluera lit up and a small part of my pancreas and spleen. She said my tumor is grade 2, stage IV, ki67 4%, she recommends I start the Lanreotide next week, surgery is no longer an option, I still do not have any symptoms. The past two weeks have been a whirlwind, and tomorrow morning she wants anothe CT scan of the abdomen to review the pancreas and spleen. Currently I am very emotional and can’t believe this is happening, I wish I would of had the surgery in 2017 . Thank you for your comments and you give me hope!
Regards,
Dak10

Hello @dak10,

I so appreciate hearing from you again with some more information on your journey with NETs. Your post certainly shows the importance of seeing a NETs specialist. I'm sure that you are glad that you did.

I can understand your comment, "...I am very emotional and can’t believe this is happening." This is a common reaction to a diagnosis of NETs as there often aren't any symptoms when it is discovered.

As it sounds as if you have a good medical team on your side, I hope that you are able, to some degree, to accept your current emotions as normal and do your best not to worry excessively. I know that this is easier said than done, but nonetheless it is a worthwhile goal. Please use this forum and get to know the members of this community and use it as a sounding board for your fears and concerns.

You may also be interested in these related discussions:
– Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
– Not sure I'm in the right place: Stage 4 Neuroendocrine carcinoma https://connect.mayoclinic.org/discussion/not-sure-if-i-am-in-the-right-place/
– NETs: Anyone has Liver debulking for liver metastasis? https://connect.mayoclinic.org/discussion/net-liver-debulking/

As you read the posts in these discussions, feel free to ask questions of the members who have posted (just click on "Reply" under the post). As you meet others and learn from their experiences, you will gain important information about how they have adjusted to their treatment of this rare disorder.

Will you keep posting as you have concerns and questions?

Hello @sylvian and welcome to the NETs discussion on Mayo Clinic Connect. As you can see, I moved your post to another discussion group where members have lung NETs along with metastasis to other organs in the body. I'm glad that you found this forum. It is certainly helpful to be able to meet others who will share their experiences about their diagnosis and treatment.

I am a 20-year survivor of NETs. Since 2003, I have had three surgeries for NETs in the upper digestive tract, my last surgery was in 2016. I have only required surgery, with no other treatment needed.

I can understand you wanting to be sure that you are getting the best treatment possible. You do not mention if your current oncologist is a NET specialist. NET specialists are trained in the latest treatment modalities for this rare cancer. Here is a listing of NET specialists. If you do not live near one of these doctors, you might consider having a virtual appointment in order to get a second opinion.

--Carcinoid Cancer Foundation: Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I'm glad to hear that you are going to the gym. Physical activity is good for anxiety, and it is important to keep anxiety at a manageable level. It is great that you are not experiencing any significant symptoms from the cancer or the treatment.

I would encourage you to read the posts of other members in this discussion group and feel free to ask questions by hitting the "Reply or Comment" button. This way you will get to know others and learn from their experiences.

I look forward to hearing from you. Will you continue to share your concerns, questions and also updates on how you are doing?