New here: Looking for others who have NSCLC and information

Welcome @harley123. You've come to the right place to give and get support and to learn from the experiences of others who are living with non small cell lung cancer, like @ta52 @lls8000 @richcolleen @carebears91 @pat3017a @marshall8318 @seaspray and others.

You are not alone in finding lung cancer accidently when getting imaging studies for a shoulder issue. This happened to a dear friend of mine in 2008 and he's still here today.

Tom, do you know what stage your cancer is? Did you have surgery? Oops, I'm asking questions, but you're the one who has questions. Please ask away.

Well I can answer some thay said it's between 3 and 4 stage and no I didn't have surgery I haven't got a lot of answers it's been so this is what we're going to do

That's just it right now I don't know what choices I have thank you

It's easy to feel flummoxed or overwhelmed with this kind of news at first. While you gather more information, from your doctor(s), here and other online venues, including medical journals, etc., can you also get names of oncologist specialists for this cancer in your area and get another opinion?

The opinions might fully agree, which can be very reassuring, and each chance to ask more questions about diagnosis and treatment plan will help you understand the choices and the basis for the treatment recommendations. Keeping a list of everything that you don't understand, and then getting the answers and understanding, can help a great deal to focus on moving forward in such an unfamiliar situation. I saw my surgeon twice, before having (successful) surgery, because I was too much in shock the first time to even think of any questions. I had plenty of questions by the second visit a week later and that made a lot of difference to my level of confidence about the surgeon's approach.

Hi, Tom .... I'm another Tom.
I was diagnosed with inoperable Stage IV non-small cell lung cancer in early October 2020 and started immunotherapy (Keytruda) later that same month. During the first course of Keytruda I also had a lighter version of chemo. I had no side effects from either and my results were not typical but I will tell you that within months there was no longer and evidence of disease.
The genetic testing is critical!!! So many of the new therapies are driven by DNA results. Also, have they biopsied yet? That, too, is really important.
last word of advice: you've just been told you have cancer and you want things to start moving at the speed of light but be patient. The tests they are running now are critical to your future treatment and your future treatment is critical to controlling the cancer.

There are always a lot of questions throughout the process of diagnosis and treatment, that’s normal. Be sure to keep asking your doctors until you understand. It’s normal to feel overwhelmed, it all happens so fast and is generally so very unexpected. I hate that we see so many new people diagnosed!
Ask about the stage, it is important in determining the treatment, and can be important for certain benefits later.
It’s good that they are waiting for the DNA/biomarker testing prior to treating with immunotherapy, it is not effective for all types of lung cancer, and the biomarker testing will confirm that the selected treatment is a good match at the cellular level. The chemo should help with some of the symptoms, but some docs will hold chemo until the biomarker tests are back too, but only if you can tolerate the symptoms that you are experiencing.
I kept a list of questions on the notepad section of my phone, so as things popped into my head I could ‘write’ them down and then I wouldn’t forget. I could also put that particular question out of my mind then.
I was diagnosed 2 years ago, stage IV, and I lead a fairly normal life today. I know that my clock is ticking, but I try to do the best to enjoy my time.
Take care!, there is real hope in the realm of lung cancer, we’ve come a long way with new treatments!

@harley123
Hi Tom, I’m Juliette. I was diagnosed with stage III non small lung cancer December 2019 at 45 when an abdominal x-ray for a GI referral showed a tumor in my right lung. I was in complete shock. Some of the comments already given I will echo. Getting a second opinion is reassuring in feeling confident in your treatment plan. I got a second opinion at Mayo and followed through with all my treatments there. When two oncologist tell you the same thing it is very reassuring. I just told the first doctor I trusted him and liked him very much but wanted a second opinion for the reassurance. A good oncologist will not be offended by that and will happily do the referral for you if that is what you choose. I would also echo Tom’s comments on genetic testing. I was anxious to start treatment once I knew there was this enemy inside me but the genetic testing is vital in a treatment plan. I found out I have the EGFR Exon 19 mutation in my tumor. A friend sent me a book by Greg Anderson, Cancer 50 Things To Do when I was diagnosed. The author is a stage IV lung cancer survivor and the book has a very positive message and advice. I read it twice during the first few weeks after my diagnosis waiting for genetic tests to come back and start treatment. My husband found lung cancer survivor stories to share with me as well. Remember the statics for lung cancer are behind. Some of the new treatments have not been around for 5 years so statics do not reflect those advancements.
Please take care and wish you luck on your treatments.

Hi Tom yes I did have a biopsy and your right I just wanted for things to happen to me it seemed like that were dragging there feet but thanks for the input

Good evening Tom. My name is Colleen and I also had same symptoms as you except had some back pain also nothing out of ordinary. Ran out of breath climbing stairs. Went to Dr same day and was told I had aggressive NSCLC and could not get into Coborns cancer center in town here so called Mayo. Got appointments for 4 days and got the news it was stage 4 NSCLC which had metastasize to stomach and kidneys. Surgery and radiation was ruled out and chemo was my only hope. Started 4 kinds same week but after 7 months I had enough so I said I’m done. They than started me on keytruda for 2 years. Had to quit as ended up with cdiff , inflamed joints and kidneys were only working at 28%. Drank 60-70 oz water daily for 3 months and know working good cdiff cleared up and Inflammation is only thing I’m dealing with and take prednisone for that. Tumor, nodules, and cells have all shrunk.
Lots of prayers came my way and God gave me more years than they expected but one Dr at Mayo said God is in control and He is. Good luck and check in with this great group.

Welcome, Tom. I'm Merry, the Mentor for the Lung Cancer group. Who is that beautiful baby in your arms?

I know that things seem like a tsunami is right on top of you but if you can muster up some patience you will have your answers. All the tests that have been done and that are scheduled are to determine exactly what is going on and what choices you will be offered/recommended as a result of all that information.

Do you know what the name of the chemo is that you are going to be put on? Did the dr. tell you when it will begin? Do you have family that can help you during your future treatments?

Merry