Living with lung cancer - Introduce yourself & come say hi

Hi my name is Gloria and I have a condition called DIPNECH ( for short) . I cannot find another who has it so we can compare symptoms etc. I had half my right lung removed 6 years ago and now I am awaiting having more removed as another tumour is slowly growing next to my heart wall. Would like to connect with another dipnech sufferer.

Hi my name is Gloria and I have a condition called DIPNECH ( for short) . I cannot find another who has it so we can compare symptoms etc. I had half my right lung removed 6 years ago and now I am awaiting having more removed as another tumour is slowly growing next to my heart wall. Would like to connect with another dipnech sufferer.

Hi my name is Gloria and I have a condition called DIPNECH ( for short) . I cannot find another who has it so we can compare symptoms etc. I had half my right lung removed 6 years ago and now I am awaiting having more removed as another tumour is slowly growing next to my heart wall. Would like to connect with another dipnech sufferer.

Hi, I'm Sandy. I just found out in May that my low dose CT scan showed a nodule. Since then, I had surgery on May 29th.. a wedge resection. It had not spread to the lymph nodes, and they seem to think that they got it all. They said it was adenocarcinoma and staged me at 1B (I'm assuming it's B instead of A because the nodule had extended slightly into the pleural wall).

My pulmonologist didn't think chemo etc, would be needed unless I really wanted to. I didn't.

I looked up recurrence rates for NSCLC, and it wasn't very encouraging! I'm still having continued pain now in September for my robotic surgery I had at the end of May. It took me quite a bit longer than I expected to get up and around.

I guess I don't know if I should say that I have lung cancer, or not. I'm reluctant to say I'm cured, because I think more time needs to go by to see if anything else comes up. They plan on watching me closely.

Anyway.. I'm grateful for this group, and I learned some things in the last couple of months on here. I'm staying away from dot-com websites, and sticking with EDU, gov... That kind of thing and occasionally the British version of our NIH.

Smiles to you all!
Sandy

Hello @gprior,

I would like to join @colleenyoung and @lls8000 in welcoming you to Mayo Connect and also inviting you to join the NETs support group to meet other DIPNECH. If you post your questions and concerns in this group:

- Anyone living long-term with DIPNECH on lungs?
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
Here you will meet many others who are living with this condition. I look forward to seeing your post in the NETs group. Will you post again there?

I was diagnosed with Stage IIB lung cancer in 2022. I have never smoked or worked around toxic materials. My lung cancer was discovered when I had a scan done prior to having a heart scan in preparation for a heart procedure. I worried about contracting other types of cancer, however never lung cancer. I have since learned that if you have lungs you can get lung cancer.
I am fortunate that I am not young, 76 years old, and don’t have a young family to raise. I live near a branch of Stanford Medical Center where I receive my medical care, which is excellent.
I am currently receiving targeted therapy, a daily pill. The main side-effect is fatigue and lack of energy.

I was diagnosed with Stage IIB lung cancer in 2022. I have never smoked or worked around toxic materials. My lung cancer was discovered when I had a scan done prior to having a heart scan in preparation for a heart procedure. I worried about contracting other types of cancer, however never lung cancer. I have since learned that if you have lungs you can get lung cancer.
I am fortunate that I am not young, 76 years old, and don’t have a young family to raise. I live near a branch of Stanford Medical Center where I receive my medical care, which is excellent.
I am currently receiving targeted therapy, a daily pill. The main side-effect is fatigue and lack of energy.

Hi, my name is Kim, I’m 52, happily married, with 2 children in their 30’s and 5 grandchildren. Unfortunately, I was a smoker for over 30 years and quit last year. 2 months ago I was diagnosed with stage 3 non small cell carcinoma lung cancer, it is in my lymph nodes so surgery and radiation is not an option at this time. Fortunately, I have a targeted gene, BRAF, and will be taking two chemo pills a day to begin killing this monster inside me. I have been trying for two frustrating weeks to get my medicine and was just blessed this morning with a liaison to help me get the medicine.
I am from Fairbanks, Alaska, born and raised, and was diagnosed with pneumonia there, however, my mother and my instincts told me to seek a second opinion and so I came to the Mayo Clinic in Phoenix where I was diagnosed with this cancer. I went back home to Fairbanks to begin treatment, however, we were all convinced that I would get better care at the Mayo Clinic so my mother and I are back in Phoenix waiting for the meds to come so I can begin treatment here. It’s been a rollercoaster of emotions to say the least, and this is only the beginning. I thought I could take care of this on my own with the support of my family and friends but already I know that I cannot, I am going to need the help of others who are experiencing the same monster within them in order to conquer this thing, and so I am starting here and reaching out for help. I’ve never felt so vulnerable and not in control and I am scared! Any and all advice is appreciated.