Living with lung cancer - Introduce yourself & come say hi

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Hi Sandy, @asongofhands, Lung screening is working. I'm encouraged when I hear of cases that are identified and treated early. Screening has the potential to change some of those scary statistics. When you look at those stats, remember that they are lagging behind today's reality. The stats are based on previously diagnoses cases; many before common lung screening was catching nodules earlier and before some of today's advancements in treatment and care.

You may find this discussion helpful, regarding the residual pain: https://connect.mayoclinic.org/discussion/pain-2/

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?

Hi Gloria, I’m glad that your first surgery brought six years of better health. I hope you find additional info and connections in the NETs group. Best of luck with your possible future surgery.

Welcome, @gprior.
You will find many members talking about diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) in the Neuroendocrine Tumors (NETS) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

Here are a couple of DIPNECH discussions to help get you connected. Click the link and introduce yourself here:
- Anyone living long-term with DIPNECH on lungs?
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
See all: https://connect.mayoclinic.org/search/discussions/?search=DIPNECH

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

Hi Kim, @kimbarr, Welcome to Mayo Connect! Thank goodness for mothers and instincts. I'm glad that you've been diagnosed so you can begin treatment.
I have a different mutation, ALK, and also take a targeted therapy/pills. That has been my only treatment. I'm still on that original treatment now, four years after diagnosis (stage IV, diagnosed at the age of 49).
No one deserves lung cancer, and we'll likely never know what caused your diagnosis. I tend to think mine is from something environmental, but others have told me that 'biology makes mistakes' and our immune systems can't always correct those mistakes.
The mental weight of the diagnosis is difficult. It will take time for you and your family to each process the reality of the situation, and you won't all have the same approach. Know that it does get easier over time. In the beginning, you need to spend some time sitting with your emotions, whatever that may look like to you; quiet time, crying, yelling, etc. Just try not to let the low times go on too long. Give yourself some grace and try to do something to take your mind off things too. You are in Arizona, are you feeling good enough to get out for a walk as the heat permits?
There have been a few others with relatives with BRAF on Connect, these are some that I've found. Maybe they'll pipe in with their experiences too. @rockpine, @duckduck2020
Hopefully your pills come soon, so you can get started.

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.

Lisa, @lbucky, I responded on your other post, but want to welcome you to our group again.
Going through various stages of acceptance is perfectly normal. What ever you are both feeling is right where you need to be at the time. Try to keep talking to each other about what you're feeling. It's sometimes easy to clam up and keep it inside, but it will help if the two of you are in synch. It's ok to cry, this is stressful.
We've all faced the waiting. Waiting for appointments, additional tests, and results can be difficult. It will always take longer than you want it to but try to take a deep breath and do something to keep your mind off of things. I image that you both are very busy right now with the start of the school year.