1. < Neuroendocrine Tumors (NETs)

What questions should I ask oncologist tumor types and chemo treatment

Posted by emilyfaith @emilyfaith, Mar 9 5:02am

77 yrs old, no symptoms, diagnosis not clear. NET found in LL lung and lymph nodes in upper LL. Dotatate G scan no involvement in other organs. Lymph node is typical carcinoid. Tumor Board recommended 2nd opinion of biopsy because LL tumor is not clearly defined. Waiting for results. Met with radiation oncologist who recommended against radiation treatment. Meeting with different oncologist to talk about radiation treatment. Hopefully the 2nd opinion results will be shared then with me. What questions should I ask this oncologist about the type of tumors and about treatment? Not really understanding what is happening concerning this diagnosis and treatment.

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

nana120 | @nana120 | Mar 9 9:08am

When my NET was diagnosed I was seeing an oncologist who immediately recommended chemo. At age 81 I knew I did not want to spend what could be my end of life being miserable and sick, so I asked for other options. I was referred to a NET specialist who explained NeuroEndocrine tumors in full and after a few months of watching the growth of the tumor on my liver I was started on lanreotide injections every 28 days. Other than feeling lethargic for a few days I feel blessed to have an almost normal life. My suggestion is to locate a NET specialist in your area for a second opinion! Take care!

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emilyfaith | @emilyfaith | Mar 9 11:52am

Yes, thanks for the advice. I plan on getting a 2nd opinion and will spend time identifying specialist with most experience with lung NETs.

Thanks again.

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1 reply
pattirushing | @pattirushing | Mar 10 6:00am
In reply to @emilyfaith "Yes, thanks for the advice. I plan on getting a 2nd opinion and will spend time..." + (show)
@emilyfaith

Yes, thanks for the advice. I plan on getting a 2nd opinion and will spend time identifying specialist with most experience with lung NETs.

Thanks again.

Jump to this post

I had neuroendocrine tumors in upper and lower lobe at 68 years old. I had SBRT radiation to destroy them a year ago. I also started sandostatin injections every 4 weeks. My scans show no evidence of disease right now. Mine were found when being checked for something else. Take care and let us hear from you.

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emilyfaith | @emilyfaith | Mar 10 6:17am

Patti , thank you for your reply. The best to you with your future scans. Emily

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lindabees | @lindabees | Mar 10 10:23am

Im sorry you’re going through this. The best thing you can do is fully educate yourself on this disease and possible treatments. Next is to consult with a net specialist. You can learn a ton about this disease and find a specialist near you at
https://www.carcinoid.org/for-patients/
There’s also a list of questions to ask at
https://www.cancer.net/cancer-types/neuroendocrine-tumors/questions-ask-health-care-team
There’s a very well known and respected specialist, Dr Liu at Rocky Mountain Mountain Cancer Center in Denver who (I believe) does out of state Telehealth consults if there isn’t a specialist near you.

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1 reply
emilyfaith | @emilyfaith | Mar 14 8:58pm
In reply to @lindabees "Im sorry you’re going through this. The best thing you can do is fully educate yourself..." + (show)
@lindabees

Im sorry you’re going through this. The best thing you can do is fully educate yourself on this disease and possible treatments. Next is to consult with a net specialist. You can learn a ton about this disease and find a specialist near you at
https://www.carcinoid.org/for-patients/
There’s also a list of questions to ask at
https://www.cancer.net/cancer-types/neuroendocrine-tumors/questions-ask-health-care-team
There’s a very well known and respected specialist, Dr Liu at Rocky Mountain Mountain Cancer Center in Denver who (I believe) does out of state Telehealth consults if there isn’t a specialist near you.

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Thanks for the excellent links they look very helpful.
Emily

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vinnie694 | @vinnie694 | Mar 18 8:48am

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver , I’m seeing Dr. Starr Mayo Jacksonville Fl. He is a specialist on this type of cancer.. Immediately started Lanreotide injections, that didn’t help with the hot flashes (carcinoid syndrome) switched to ocreotide, I didn’t have any surgeries, radiation or chemotherapy. Just had a MRI and in 14 months I still have the Same amount of tumors with 2 of the 16 showing very slight growth.. The injections controlled the carcinoid symptoms, and appear to have controll the spread. I’m fortunate to have little side effects from the shots, or from the tumors . I hope the best for you..

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1 reply
Turkey | @tomrennie | Mar 19 12:21pm
In reply to @vinnie694 "I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver..." + (show)
@vinnie694

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver , I’m seeing Dr. Starr Mayo Jacksonville Fl. He is a specialist on this type of cancer.. Immediately started Lanreotide injections, that didn’t help with the hot flashes (carcinoid syndrome) switched to ocreotide, I didn’t have any surgeries, radiation or chemotherapy. Just had a MRI and in 14 months I still have the Same amount of tumors with 2 of the 16 showing very slight growth.. The injections controlled the carcinoid symptoms, and appear to have controll the spread. I’m fortunate to have little side effects from the shots, or from the tumors . I hope the best for you..

Jump to this post

I believe your positive attitude helps too. Congrats on controlling the tumor growth with minimal side effects.

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