I too have a Lung NETs that has metastasized to my lymph nodes. My understanding is that the way my cancer was differentiated was between small cell and large cell L-NETs. One being more aggressive than the other. I will pray you have the lazy version of this disease. And that it responds favorably to treatments.
Blessings to all you hold dear
CEB
I too am Atypical lung net. It has spread to liver and several vertebrae in my back.
I have started Luthathera treatments at Moffitt Cancer center in Tampa. I still feel good. My second treatment is about 3 weeks away. I am also taking Sandostatin 30 mg every 4 weeks.
May God bless you on your journey.
SBRT, 5 Treatments total. See http://www.redjournal.org “Early-Stage Primary Lung Neuroendocrine Tumors Treated With Stereotactic Body Radiation Therapy: A Multi-Institution Experience.” This report hypothesizes that SBRT could lead to …effective tumor control and long -term outcomes.” The data is small and particularly small for Atypical LNETs.
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😊
SBRT, 5 Treatments total. See http://www.redjournal.org “Early-Stage Primary Lung Neuroendocrine Tumors Treated With Stereotactic Body Radiation Therapy: A Multi-Institution Experience.” This report hypothesizes that SBRT could lead to …effective tumor control and long -term outcomes.” The data is small and particularly small for Atypical LNETs.
I too had 5 treatments of sbrt for 2 lung nets. I did not have any side effects and tolerated the treatment well. Had a ct scan after 3 months and all looked good. Will have another scan in 4 more months.
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@gesmone1
Many of us, including myself, had no symptoms and the NETs were found incidentally, when another diagnostic test was being done.
How many PRRT treatments have you had? Are you tolerating them well?
I too have a Lung NETs that has metastasized to my lymph nodes. My understanding is that the way my cancer was differentiated was between small cell and large cell L-NETs. One being more aggressive than the other. I will pray you have the lazy version of this disease. And that it responds favorably to treatments.
Blessings to all you hold dear
CEB
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2 ReactionsOnly had one. Next treatment in 3 weeks. I have not experienced any side effects.
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1 ReactionI'm glad to hear that you've had no side-effects, @gesmone1! That is good news.
Will you continue to post as you have questions or concerns?
Best to you and Mahalo from Maui where I am being treated.
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1 ReactionSBRT, 5 Treatments total. See http://www.redjournal.org “Early-Stage Primary Lung Neuroendocrine Tumors Treated With Stereotactic Body Radiation Therapy: A Multi-Institution Experience.” This report hypothesizes that SBRT could lead to …effective tumor control and long -term outcomes.” The data is small and particularly small for Atypical LNETs.
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1 ReactionMy prayer is that you have found a good specialist and treatment goes well.
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😊
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2 ReactionsI too had 5 treatments of sbrt for 2 lung nets. I did not have any side effects and tolerated the treatment well. Had a ct scan after 3 months and all looked good. Will have another scan in 4 more months.
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3 ReactionsWas radiation an option to removal of the NET?