After rangaling for a year between removing my left and living with tumors(3, 1 calcified), I've had since Vietnam, I've opted for a radiation my oncologist describes as a flashlight. If anyone could further enlighten me on they're experience, thank you.
I also had sbrt radiation for lung carcinoids a year ago and have been on monthly sandostatin shots. There has been no progression of disease. Another ct scan coming at the end of February. I feel really good. Take care!
After rangaling for a year between removing my left and living with tumors(3, 1 calcified), I've had since Vietnam, I've opted for a radiation my oncologist describes as a flashlight. If anyone could further enlighten me on they're experience, thank you.
I had SRBT radiation.. this along with the chemotherapy reduced my tumor sizes by half. The SBRT was a pinpoint targeting therapy that reduces the damage to the surrounding cells.
Fatigue, dizziness, and constipation were the main side effects that I experienced.
I have a Lung Net that is well defined, grade one. It is in my middle lobe of my right lung. I have been to a local surgeon and to a NET Specialist at Cedar Sinaí in Los Angeles. Dr Sankar at Ceder agreed with my what local surgeon proposed. I was also given the option to do nothing and watch it. My NET was a incidental finding while I was hospitalized with diverticulitis. I have loss 25 odd since January.
I have decided that I would have surgery to have the NET removed, I waiting for a surgery date. I’m a 23 year survivor of breast cancer, so I’ve down this road before, it is nice to have a support group NET patients😊
I am a lung cancer survivor. I was lucky my PCP ordered a CT scan just to check me as I was a smoker. Mayo Clinic has be giving me low dose scans since my surgery 2010. Found a couple new nodules last scan but they are being monitored.
I just trust the Mayo clinic. God bless everyone going through cancer.
It's hard not thinking it.
Please keep up with your appointments.
I am a lung cancer survivor. I was lucky my PCP ordered a CT scan just to check me as I was a smoker. Mayo Clinic has be giving me low dose scans since my surgery 2010. Found a couple new nodules last scan but they are being monitored.
I just trust the Mayo clinic. God bless everyone going through cancer.
It's hard not thinking it.
Please keep up with your appointments.
Hello @dolly123 and welcome to Mayo Connect. As you posted in the NETs (Neuroendocrine Tumors) support group, I'm assuming that your lung cancer was determined to be a NETs/carcinoid?
Have you had any surgery or other treatment or are you just being followed for changes?
I was diagnosed with stage 3 atypical carcinoid in dec of 2023. Ki-67 number was 5. In January 2024 I had 1.5 lobes removed from my left side and 13 lymph nodes removed. In May 2024 is was given a clean bill of health.
In August 2024 I was flagged as having a liver cyst. At this time, my 3 month checkup changed to 6 months.
In February 2025 my ‘cyst’ biopsy showed my lung carcinoid had metastasis to the liver. My .6mm cyst magnified to (4) 2-3cm tumors and dozens more spread out across all liver quadrants. The ki-67 number is now25 average with 40 in hot spots. My local oncologist suggested radiation is not good for the liver and is proposing an embolism for the largest tumors without a suggestion for the smaller tumors.
Maybe there are other/additional things for me to try?
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Yes, that was what was recommended. I consulted a surgeon and he also recommended radiation as the 2 lung nets were in different places in my lung.
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1 ReactionAfter rangaling for a year between removing my left and living with tumors(3, 1 calcified), I've had since Vietnam, I've opted for a radiation my oncologist describes as a flashlight. If anyone could further enlighten me on they're experience, thank you.
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1 ReactionAfter radiation and chemo my LNet was reduced in size by 50%. I am now on Lanreotide monthly injections with a scan every six months.
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2 ReactionsI also had sbrt radiation for lung carcinoids a year ago and have been on monthly sandostatin shots. There has been no progression of disease. Another ct scan coming at the end of February. I feel really good. Take care!
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3 ReactionsI got my monthly injection and noticed this poster on the wall. I wanted share the information at the bottom of this picture… I found it interesting.
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2 ReactionsI had SRBT radiation.. this along with the chemotherapy reduced my tumor sizes by half. The SBRT was a pinpoint targeting therapy that reduces the damage to the surrounding cells.
Fatigue, dizziness, and constipation were the main side effects that I experienced.
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Helpful -
Hug
1 ReactionDid you have surgery? How did it go?
I hope all is well.
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2 ReactionsI am a lung cancer survivor. I was lucky my PCP ordered a CT scan just to check me as I was a smoker. Mayo Clinic has be giving me low dose scans since my surgery 2010. Found a couple new nodules last scan but they are being monitored.
I just trust the Mayo clinic. God bless everyone going through cancer.
It's hard not thinking it.
Please keep up with your appointments.
-
Like -
Helpful -
Hug
2 ReactionsHello @dolly123 and welcome to Mayo Connect. As you posted in the NETs (Neuroendocrine Tumors) support group, I'm assuming that your lung cancer was determined to be a NETs/carcinoid?
Have you had any surgery or other treatment or are you just being followed for changes?
I was diagnosed with stage 3 atypical carcinoid in dec of 2023. Ki-67 number was 5. In January 2024 I had 1.5 lobes removed from my left side and 13 lymph nodes removed. In May 2024 is was given a clean bill of health.
In August 2024 I was flagged as having a liver cyst. At this time, my 3 month checkup changed to 6 months.
In February 2025 my ‘cyst’ biopsy showed my lung carcinoid had metastasis to the liver. My .6mm cyst magnified to (4) 2-3cm tumors and dozens more spread out across all liver quadrants. The ki-67 number is now25 average with 40 in hot spots. My local oncologist suggested radiation is not good for the liver and is proposing an embolism for the largest tumors without a suggestion for the smaller tumors.
Maybe there are other/additional things for me to try?
-
Like -
Helpful -
Hug
1 Reaction