1. < Neuroendocrine Tumors (NETs)

Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Posted by dak10 @dak10, Mar 14, 2023

I am newly diagnosed with Neuroendocrine tumor of lung. I have been monitoring a lung node in the lung since 2017 with no change, until last CT scan the node grew, to tumor/mass, biopsy found Neuroendocrine tumor. Oncology wants to begin Lanreotide injections to slow/ stop growth. I am very scared and am unsure about Lanreotide. I welcome your comments.
Thank you!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

dak10 | @dak10 | Mar 17, 2023
In reply to @hopeful33250 "Hello @sylvian and welcome to the NETs discussion on Mayo Clinic Connect. As you can see,..." + (show)
@hopeful33250

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?

Jump to this post

Thank you for your information, and moving my post. I will continue to share how I am doing and any updates regarding treatment. Today I had. CT scan scheduled, with contrast for my pancreas and spleen, they tried to get the IV in 5 times and we’re unsuccessful, 3 techs tried, so I could not get the scan today, maybe another time. Have a great day,
Regards,
Dak10

REPLY
1 reply
sylvian | @sylvian | Mar 17, 2023
In reply to @hopeful33250 "Hello @sylvian and welcome to the NETs discussion on Mayo Clinic Connect. As you can see,..." + (show)
@hopeful33250

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?

Jump to this post

Thank you for moving my post ! And for sure I will continue to share! Because of your reply I now feel I have more questions that I can ask my Oncologist ! The web site you suggested had the nearest NETs specialist in another province.
I have just finished my ninth cycle and will be talking to my Oncologist on the 27th.
One thing I forget to mention in my original post is last 5H11A result was at 189 , up from the last month 144. Chromagranin 39 , down from 41 last month.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 17, 2023
In reply to @sylvian "Thank you for moving my post ! And for sure I will continue to share! Because..." + (show)
@sylvian

Thank you for moving my post ! And for sure I will continue to share! Because of your reply I now feel I have more questions that I can ask my Oncologist ! The web site you suggested had the nearest NETs specialist in another province.
I have just finished my ninth cycle and will be talking to my Oncologist on the 27th.
One thing I forget to mention in my original post is last 5H11A result was at 189 , up from the last month 144. Chromagranin 39 , down from 41 last month.

Jump to this post

I appreciate your reply, @sylvian. I see that you have mentioned some different lab results. There is no mention of a Serotonin lab test. You might inquire about this as well.

Here is a list of tests and scans that are often used when making a NETs diagnosis or in following up on NETs.
--Diagnosis and Follow up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

Your doctor will probably tell you that lab tests alone do not give a complete picture, but that combined with scans, biopsies, etc. are used to complete the picture.

I look forward to hearing from you again. Will you post any other questions or concerns you have?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 26, 2023
In reply to @dak10 "Thank you for your information, and moving my post. I will continue to share how I..." + (show)
@dak10

Thank you for your information, and moving my post. I will continue to share how I am doing and any updates regarding treatment. Today I had. CT scan scheduled, with contrast for my pancreas and spleen, they tried to get the IV in 5 times and we’re unsuccessful, 3 techs tried, so I could not get the scan today, maybe another time. Have a great day,
Regards,
Dak10

Jump to this post

Just checking in, @dak10. How are you doing?

REPLY
1 reply
dak10 | @dak10 | Mar 29, 2023
In reply to @colleenyoung "Just checking in, @dak10. How are you doing?" + (show)
@colleenyoung

Just checking in, @dak10. How are you doing?

Jump to this post

Thank you for checking on me. I am having some back pain and sciatic pain. I started physical therapy, and they said my back is in a tight ball, so this may take sometime to loosen up. I am starting the Lanreotide injections on 4/20. I do not have any symptoms, so I feel blessed, but am very nervous about the injection and the side effects. Thanks again, I appreciate your thoughtfulness!
Regards,
Dak10

REPLY
mimmy | @mimmy | Mar 31, 2023

Hi. I also have NET starting in the lung. It has spread to liver and lymph nodes. I have been on Lanreotide since May of 2022. The first few months I had mild reaction to the shot. I have very few side effects now and what I have is doable. My spots have been steady with no new growth. Some of the spots have shrunk. Good luck.

REPLY
1 reply
dak10 | @dak10 | Mar 31, 2023
In reply to @mimmy "Hi. I also have NET starting in the lung. It has spread to liver and lymph..." + (show)
@mimmy

Hi. I also have NET starting in the lung. It has spread to liver and lymph nodes. I have been on Lanreotide since May of 2022. The first few months I had mild reaction to the shot. I have very few side effects now and what I have is doable. My spots have been steady with no new growth. Some of the spots have shrunk. Good luck.

Jump to this post

Thank you so much for sharing your experience. My PET scan showed numerous spots in the right lobes of the lung and in the lung lining, also the tail of the pancreas and spleen. I am scheduled for a CT scan of the abdomen which will be specific to review pancreas/ spleen on 4/25, and will meet with the Dr. on 4/26. My first injection will be on 4/20.
Thank you,
Dak10

REPLY
3 replies
mimmy | @mimmy | Mar 31, 2023
In reply to @dak10 "Thank you so much for sharing your experience. My PET scan showed numerous spots in the..." + (show)
@dak10

Thank you so much for sharing your experience. My PET scan showed numerous spots in the right lobes of the lung and in the lung lining, also the tail of the pancreas and spleen. I am scheduled for a CT scan of the abdomen which will be specific to review pancreas/ spleen on 4/25, and will meet with the Dr. on 4/26. My first injection will be on 4/20.
Thank you,
Dak10

Jump to this post

Good luck!

REPLY
Zebra | @californiazebra | Apr 1, 2023
In reply to @dak10 "Thank you so much for sharing your experience. My PET scan showed numerous spots in the..." + (show)
@dak10

Thank you so much for sharing your experience. My PET scan showed numerous spots in the right lobes of the lung and in the lung lining, also the tail of the pancreas and spleen. I am scheduled for a CT scan of the abdomen which will be specific to review pancreas/ spleen on 4/25, and will meet with the Dr. on 4/26. My first injection will be on 4/20.
Thank you,
Dak10

Jump to this post

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical lung NETs along with DIPNECH which is a pre-cancerous condition that can precede that and cause multiple tumors. I have over 50 lung tumors, both lungs, visible on the scans. First discovered in 2008, but not biopsied and diagnosed properly until 2020. I have been taking Octreotide (similar to Lanreotide) injections every 4 weeks for 2 years. I had 30 years of chronic coughing, clear mucous, and shortness of breath upon exertion and that is 90% better from the Octreotide injections so it's life changing for me. I love my Octreotide! Also supposed to slow the growth, but typical carcinoids are already slow growing. No lung NETs metastasis for me. I had already been taking two breast cancer (unrelated) meds for two months that cause a lot of side effects so hard to tell with Octreotide, but I do know it caused me to be diabetic, slowed my heart rate more and made blood pressure even lower. I felt like it added to fatigue and increased thinning hair that had started with other meds. No digestive issues from it. Having said all that, my body tends to overreact to all meds so your side effects may be less. It's doable and worth it for me.

Do you each have typical or atypical carcinoids? Good luck to you both!

REPLY
sylvian | @sylvian | Apr 1, 2023
In reply to @hopeful33250 "I appreciate your reply, @sylvian. I see that you have mentioned some different lab results. There..." + (show)
@hopeful33250

I appreciate your reply, @sylvian. I see that you have mentioned some different lab results. There is no mention of a Serotonin lab test. You might inquire about this as well.

Here is a list of tests and scans that are often used when making a NETs diagnosis or in following up on NETs.
--Diagnosis and Follow up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

Your doctor will probably tell you that lab tests alone do not give a complete picture, but that combined with scans, biopsies, etc. are used to complete the picture.

I look forward to hearing from you again. Will you post any other questions or concerns you have?

Jump to this post

I had a follow up with the Oncologist earlier this week. I inquired about a NET specialist, and was informed that they are not NET specialists but they do confer with other Cancer centres about my case . So I’m happy about that . I am also scheduled for an Octreotide Scan on the 26/27 of this month and a bone scan. Pending results if uptake from scan is high, she will refer me to intervention radiology for a liver lesion TACE. Latest Chromagranin A is 39 . No results yet from 5H11A.
I’m just starting my 10th cycle of CapTem and still,so far, have no side effects or noticeable symptoms of NETs . I am so thankful for that ! With that said , I’m anxious about how I would be feeling if I have to do TACE especially with feeling so good right now. Anyone else have this procedure ?
Staying positive !

REPLY
View MoreView Less
Please sign in or register to post a reply.