Atypical Lung NET treated with radiation: What was your outcome?

Posted by marieritzman @marieritzman, Sep 11, 2023

Has anyone had this LNET treated with Radiation and what was your outcome?

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

Teresa, Volunteer Mentor | @hopeful33250 | Oct 1, 2023

In reply to @gesmone1 "It was found during a CT last Nov 2022. I had not experienced any symptoms." + (show)

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?

ce1b | @ce1b | Oct 1, 2023

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

gesmone1 | @gesmone1 | Oct 1, 2023

In reply to @hopeful33250 "@gesmone1 Many of us, including myself, had no symptoms and the NETs were found incidentally, when..." + (show)

Only had one. Next treatment in 3 weeks. I have not experienced any side effects.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 2, 2023

In reply to @gesmone1 "Only had one. Next treatment in 3 weeks. I have not experienced any side effects." + (show)

I'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?

marieritzman | @marieritzman | Oct 4, 2023

In reply to @gesmone1 "I too am Atypical lung net. It has spread to liver and several vertebrae in my..." + (show)

Best to you and Mahalo from Maui where I am being treated.

marieritzman | @marieritzman | Oct 4, 2023

In reply to @hopeful33250 "@gesmone1 Many of us, including myself, had no symptoms and the NETs were found incidentally, when..." + (show)

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.

gesmone1 | @gesmone1 | Oct 4, 2023

In reply to @marieritzman "Best to you and Mahalo from Maui where I am being treated." + (show)

My prayer is that you have found a good specialist and treatment goes well.

gmapam | @gmapam | Oct 4, 2023

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😊

pattirushing | @pattirushing | Oct 5, 2023

In reply to @marieritzman "SBRT, 5 Treatments total. See www.redjournal.org “Early-Stage Primary Lung Neuroendocrine Tumors Treated With Stereotactic Body Radiation..." + (show)

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.