New here: Looking for others who have NSCLC and information

Hi @donnadeno!, I'm glad you found us. Thanks for sharing the pictures, they look like fabulous times and great memories. You've been through a lot already! I hope your appointment went well today. It's good to get the answers that you need, and a plan to move forward.
Are you feeling ok with your progress to recovery from surgery? It can certainly take a while, be patient with yourself.

No need for chemo. I was very lucky that my cancer was found accidentally with a CT scan for my heart. However the doctor thought we should wait 3 months and repeat the test. I thought no way. Another doc ordered a PET scan and it confirmed need to see surgeon. He found not just the one nodule that lit up but a second one also. I will have CT scans twice a year. I’m sore and still short of breath. Difficult in Florida to do much walking. I do get a little discouraged when I look at things that need to be done around the house, wishing I could do more. I know I need to be patient but that is difficult at times.
For now I am so grateful my cancer was found so early. I always recommend to friends that they need to be their own best advocate and to research everything. Don’t always take the Doctors word until you do some research. Thank you for listening.

Bless you Donna. I hope someone that has had lobectomy or wedge resection in Right Upper Lobe will respond, as I believe the post surgical pain and management of pain may be different because the surgical approach is different. I had the entire left lower lobe removed, and over four months later I still have rib and/or rib muscle tightness that means I have to be really intentional to take deep breaths and that restriction is still sore. But you are very early in the recovery process. I would just stress to force yourself to do the breathing exercises and walking, and keep your pain management on board - whatever you may be prescribed. I don't do narcotics and can't take ibuprofen any longer due to a different condition, so tylenol was about all i had after the surgery.

This is a great support group - some of us more experienced and steeped in the "how", but all of us engaged in moral support!!

Hi, I just had my lower left lobe removed on September 29th.
So you are 4 months out? Are you retired? If not when did you return to work? I am hoping I can return to work in January.

I had just recently retired. But I’m confident I could have returned earlier. That said, we are all different. I don’t take narcotics and took myself off drugs like gabapentin because of side effects. Even with those actions that cause drowsiness, I napped every day - sometimes multiple times a day - for the first six weeks. Our bodies hate anesthesia and it just takes time to rid ourselves of lingering effects.
But by week 12 I could have sat at my desk and worked. Could I have done 8 hours of zoom? Maybe not. You just have to take it as it comes. What kind of work do you do?

Hello @aprilradek- It's nice to meet you. Welcome to wondering how long you have to wait to do things after a lobectomy. Honestly, we should all start a club!

What does your doctor have to say concerning this or haven't you had a follow-up? How are you feeling?

I am a teacher, I am 56 and would like to work until I am 60. This school year I will work with 1st-3rd special education students. It is very demanding. There is a substitute in my position. I will wait and see how I am doing. You are correct we are all different, and the timeline of our healing reflects this difference. I do not what the next stage of my treatment will be yet. I meet with the oncologist next week. The surgeon also took out 10 lymph nodes and one had cancer. I know if the oncologist says I need more chemo I can't work. I did Chemo over the summer pre-surgery and it wiped me out.
I am assuming surgery was your last treatment and your oncologist will continue to follow up with PETCT scans?

Hi, I met with the NP yesterday and she said one of the ten lymph removed along with my lower left lobe has cancer. She was just checking in on me but also had the pathology report.
I had the surgery on September 29th and I will meet with the oncologist Monday the 16th.
I really hope I don't have to do more chemo. I do have the ALK marker, so I am hoping for targeted meds and not chemo.
I feel better each day and can do a little bit more each day.
I did come done with shingles so that is a bummer! I am hoping it is a mild case.

Shingles! That’s adding insult to injury! I hope You have a mild case. And I hope you get a tolerable treatment plan for your hot lymph node.

Hi @aprilradek, I'm glad that you are starting to feel better. Take your time, and allow your body to heal, be patient with yourself. The news that you have an ALK mutation is quite interesting to me, being an ALK patient myself. I'm Stage IV, so my treatments are/will be different than yours.
I hope that your oncologist is familiar with treating ALK and is able to explore all of your options. The ALK Positive organization (www.alkpositive.org) is very active in the search for new treatments and clinical advancements, they work closely with a number of 'ALK experts' across the country, and they have a support group that has been very helpful to me. It's so encouraging! I'll be interested to hear what you find out at your appointment on the 16th.