Hello @denisepierce and welcome to Connect. I am glad that you found this forum. NETs are a rare form of cancer, and it helps to meet with others who are travelling down the same road. I came to Connect before my third surgery for NETs in the upper digestive tract. I had no symptoms to indicate that there were any problems; it simply showed up in an upper endoscopy.
Share, as you would like, a bit about your journey with NETs. How long ago were you diagnosed? Was your large cell neuroendocrine carcinoma located in the digestive tract?
I was diagnosed with non small cell carcinoma, they removed part of lung, then diagnosed with large cell carcinoma cells, I took chemo but it showed up again, took radiation that shrunk the tumor. Now doing ct scans to monitor.
I was diagnosed with non small cell carcinoma, they removed part of lung, then diagnosed with large cell carcinoma cells, I took chemo but it showed up again, took radiation that shrunk the tumor. Now doing ct scans to monitor.
Yes. Stage 3B inoperable large cell neuroendocrine lung cancer. Had concurrent radiation and chemo. Protocol dictated Imfinzi as next treatment but my PD-L1 score was zero so I declined. Have been in "remission/reprieve" for almost 2 years.
Yes. Stage 3B inoperable large cell neuroendocrine lung cancer. Had concurrent radiation and chemo. Protocol dictated Imfinzi as next treatment but my PD-L1 score was zero so I declined. Have been in "remission/reprieve" for almost 2 years.
Hello @kmcbride77, and welcome to the NETs support group on Mayo Connect. It looks like you were diagnosed about two years ago. Is my understanding correct?
Hello @kmcbride77, and welcome to the NETs support group on Mayo Connect. It looks like you were diagnosed about two years ago. Is my understanding correct?
@hopeful33250
In the Spring of 2023 I had issues with bronchitis which initially seemed to improve with antibiotics. However, as time went by, I experienced increasing issues with what felt like asthma. I also began to have panic attacks especially at night. I continued to get chest xrays and more rounds of antibiotics plus an inhaler. Nothing really helped, and by early October I was so out of breath that I could no longer sing in the church choir, lie flat, or bend over to do gardening. I went to the ER. Another xray and was told I had pneumonia but asked for a CT scan which had been suggested (finally) by my primary care facility and was immediately afterward told I had lung cancer and admitted for biopsy. By the time I started chemo in late October I felt like I was suffocating - had a 5cm primary mass, 7cm largest involved lymph node, a partially collapsed lung due to blockage, narrowed pulmonary arteries, etc. "Coincidentally" this was my right lung - same side that received radiation for breast cancer 20 years prior. Never smoker. Age 45 breast cancer treatment ACT plus surgery plus rads - 3 nodes "dirty". Age 65 lung cancer stage 3B inoperable extensive node involvement, etoposide/carboplatin and more rads. Now age 67. I cannot find any information or advice from doctors on how to stay in remission. All I know to do is to try to stay as healthy as possible. My lung is of course damaged and I have an O2 concentrator to use at night. I can sing, walk as far as I want, and do my gardening again. I don't take breathing for granted now, so it's very easy to be grateful even though I don't have the stamina I had before. I just do what I can and modify my activities as needed. I stay positive until it gets close to scan time - every 6 months. It's almost "that time" again...
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I was diagnosed with non small cell carcinoma, they removed part of lung, then diagnosed with large cell carcinoma cells, I took chemo but it showed up again, took radiation that shrunk the tumor. Now doing ct scans to monitor.
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2 ReactionsIt sounds like you are getting good follow-up, @denisepierce. How often will you be getting CT scans?
Every 3 months
Yes. Stage 3B inoperable large cell neuroendocrine lung cancer. Had concurrent radiation and chemo. Protocol dictated Imfinzi as next treatment but my PD-L1 score was zero so I declined. Have been in "remission/reprieve" for almost 2 years.
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Like -
Helpful -
Hug
2 ReactionsHello @kmcbride77, and welcome to the NETs support group on Mayo Connect. It looks like you were diagnosed about two years ago. Is my understanding correct?
We have a number of Connect members who had NETs in the lungs. Here are some other discussions about this:
--Typical Carcinoid Tumor in the Lungs
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
--Atypical Carcinoid Tumor of the Lung
https://connect.mayoclinic.org/discussion/carcinoid-tumour/
--Biopsy showed DIPNECH
https://connect.mayoclinic.org/discussion/biopsy-showed-dipnech/
I see that you have had radiation as well as chemo. As this is your first post, please share, as you are comfortable doing so, a little about how you were diagnosed. Were you experiencing breathing difficulties or a chronic cough?
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1 Reaction@hopeful33250
In the Spring of 2023 I had issues with bronchitis which initially seemed to improve with antibiotics. However, as time went by, I experienced increasing issues with what felt like asthma. I also began to have panic attacks especially at night. I continued to get chest xrays and more rounds of antibiotics plus an inhaler. Nothing really helped, and by early October I was so out of breath that I could no longer sing in the church choir, lie flat, or bend over to do gardening. I went to the ER. Another xray and was told I had pneumonia but asked for a CT scan which had been suggested (finally) by my primary care facility and was immediately afterward told I had lung cancer and admitted for biopsy. By the time I started chemo in late October I felt like I was suffocating - had a 5cm primary mass, 7cm largest involved lymph node, a partially collapsed lung due to blockage, narrowed pulmonary arteries, etc. "Coincidentally" this was my right lung - same side that received radiation for breast cancer 20 years prior. Never smoker. Age 45 breast cancer treatment ACT plus surgery plus rads - 3 nodes "dirty". Age 65 lung cancer stage 3B inoperable extensive node involvement, etoposide/carboplatin and more rads. Now age 67. I cannot find any information or advice from doctors on how to stay in remission. All I know to do is to try to stay as healthy as possible. My lung is of course damaged and I have an O2 concentrator to use at night. I can sing, walk as far as I want, and do my gardening again. I don't take breathing for granted now, so it's very easy to be grateful even though I don't have the stamina I had before. I just do what I can and modify my activities as needed. I stay positive until it gets close to scan time - every 6 months. It's almost "that time" again...
-
Like -
Helpful -
Hug
2 Reactions