Bri Hin Posted April 28, 2023 Share Posted April 28, 2023 On August 25, 2022, I was diagnosed with nsclc. I am only 37 years old and a non-smoker. As you can imagine, I was a bit blindsided. I definitely didn't expect it to be cancer. October 12th I had a RATS Lobectomy. Today, I am 6 months out from surgery and already in remission (it was stage 1). People keep wanting to celebrate that I made it 6 months cancer free but it doesn't feel like a celebration. I'm trying to stay positive and look at the bright side of things but I'm having a hard time. I'm hoping to talk to people who get it. I also don't know what environmental factor caused my cancer and its driving me crazy. I keep wondering if I'm still doing the same thing that caused it in the first place... I'm also having issues still with numbness across my stomach, a lingering cough, and get winded so easily. All of the doctors keep saying I need to lose weight... but how?! Seriously! Lmk if you relate. -Bri Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted April 28, 2023 Share Posted April 28, 2023 Hi Bri, I can certainly relate. I was diagnosed in my 40s, just as my kid was entering school, and I thought it was the most rotten luck. I am sure at 37 (there are others here in their 20s) feels totally unfair. Don't try to second guess what caused your LC. If non-smoker, it could be anything from air pollution, radon exposure in homes or just shear terrible luck. Even smokers are not that frequently struck with LC so it is complicated to predict. Focus on the future and the fact that you were only stage 1. This means your chances of recurrence are low and chances of being cured are high. This is great but make sure they follow you up closely since LC is very sneaky. I was diagnosed stage 3b, after radiology missed my tumour 4 whole years ago, when I probably was stage 1. I was so upset, so let down, so angry and so scared. Time heals a bit and you get used to the fact that you have been so unlucky getting LC but lucky you are surviving it. Most people do not understand that I am still so worried and anxious, a year later with my scans showing NED. It is so hard living normally after cancer but one of the good things about it is that I no longer care about anything or anybody except what and who matter most in my life. I do not celebrate milestones of survival but have genuine hope I may be cured and try to focus on one day at a time, which is all I can do since no one can ever guarantee me anything (mind you no one can guarantee living tomorrow cancer or no cancer). Re. losing weight, have you tried gentle walking? I find myself out of breath easily so walking seems like an ideal exercise. Motivation often times is lacking but I keep trying. BTW, non smokers tend to have specific mutations, did they test your tumour for mutations (very important to know)? Did you get adjuvant chemo and/or targeted therapy? Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Bri Hin Posted April 28, 2023 Author Share Posted April 28, 2023 Thanks Lily. I don't know if they tested it for mutations but I'm sure I could ask my surgeon or oncologist and find out. They did do all of the genetic testing though (my mother also had breast cancer at a young age) and I was negative for all of them. As for walking, I'm walking about 10,000-12,000 steps a day. I teach kindergarten. I find myself extremely exhausted daily. I'm definitely not who I used to be and I'm just having trouble coping. I also have a 9 year old and 13 year old. I didn't have any types of therapy. They said because of the size of the tumor and the staging, that I didn't need it. They never even offered it. They said the standard treatment plan is what they follow (they gave me a sheet that showed each path) and told me it wasn't necessary. I'm scared of it recurring. The Dr also told me I have inflammatory bronchialitis but I have been extremely ill since surgery (had bronchitis twice and possibly pneumonia)... it's my students getting me sick! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted April 28, 2023 Share Posted April 28, 2023 Sorry to hear about repeated infections, can you wear an N95 mask at work? This can reduce respiratory infection chances by a lot but I know they can be a drag. For me I wear masks all the time as I hate being sick, on top of being run down by surgery after effects and cancer treatment side effects. I am not sure what the current standard of care is for stage 1 but at least for my mutation (EGFR exon-19), it seems to be becoming common to offer adjuvant chemo and/or targeted therapy as a precaution. It all comes with risks vs. rewards so the picture is not completely clear. If you have the same mutation as me, I would ask your care team about adjuvant use of Tagrisso for example, which is much less toxic/brutal than chemo. Maybe it is not standard of care but it is good to know and read up a bit if you are not confident your current care is sufficient. Second opinions are always a good idea too. Having young kids is a most terrible thing about being a cancer patient but stay hopeful that you may well have been cured. Regular scans are a must though for monitoring as I understand, at least for a few years. Stay strong, you got this! Tom Galli and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted April 28, 2023 Share Posted April 28, 2023 Hi Bri, My lung cancer was diagnosed in early 2019. After a lower-right lobectomy I was declared cancer free. Like you i was diagnosed at Stage 1 (1a to be exact). Prior to coming to Lungevity I thought my life was over the Google stats don't look so good and I spent a lot of my time in depression and anxiety. The folks here really helped me to learn about my disease, prepare for the surgery and what was to come after. Prior to my strategy I would do 5 miles/day and a weight workout (6 days/week). It took some time to build back up to that but in a few months I was back to my old routine, with the understanding that I had lost about 15% of my capacity. Over time I was back to doing all things I used to. Now my surgery was 4 years ago and I still have lingering numbness on my right side but it is tolerable and doesn't diminish my activities. Now, onto the psychological part. In the beginning I was considered NED (No Evidence of Disease) and I had my first post-surgery scan 3 months after the lobectomy and then scans every six months. Each time a scan approached my anxiety gets pretty high. After all this is lung cancer, the most lethal form. My mom died of it and most of my family from some sort of cancer. Anyway, each scan brought the anxiety (one member here coined the term Scanziety, which is perfect) and a NED result the great relief we all feel when we are still cancer free. This is so normal Bri. Then after two and a half years of scans every 6 months I was moved to annual scans. Okay now I was waiting longer between scans...more chance for cancer to return and grow...but as fate would have it my first annual scan was also NED. This coming August will be the second annual scan for me and I will be nervous, but hopeful for another NED result. So, many here (dare I say all?) go through exactly what you are experiencing. One thing I learned on this forum was to learn to live and appreciate each and every day. One of my good friends on this forum says, "I know two things; I was born and I will die". I find great wisdom in that. Yes, someday I will die but today I'm here, alive, with people who care about me, and those I can be of service to. That, and my faith, keeps me going and stabilizes me if I begin to "catastrophize" over my cancer or anything else in my life. I'm confident that you can do the same. Stick around and get to know us better. There is much you can learn here regardless of where this journey takes you. Lou Tom Galli, BBTN and LilyMir 3 Quote Link to comment Share on other sites More sharing options...
walfredo2001 Posted April 28, 2023 Share Posted April 28, 2023 Bri, I can definitely relate to your journey. A CT scan found a mass that was probable for cancer in my lungs almost exactly 1-year ago today... I also have young children, currently 11, 9, and 4. It took almost 3 months for me to receive a diagnosis, with 3 surgical biopsy attempts needed, and constant worry in between, and then just a few days after receiving a diagnosis last July I had a VATS RLL loboctomy and was "cured". I did my first follow up scan in November, and have my second one scheduled for May 8... While these are all fantastically positive in the scheme of all the possibilities of what could have been, it is very hard to celebrate any of this, and to not worry at times about when another shoe may be about to drop... Congratulations on your successful surgery- and I hope some of your current challenges start to reduce as you get further from the surgery time. I had a lot of noticeable challenges and minor pains the first 3-4 months, and it has almost all gone away at this point for me. Being a teacher would be brutal for wellness! My youngest is in Montessori/Daycare and seems to catch everything and bring it to my house. I've often wondered if I had needed chemo as part of my treatment plan, how the hell that would have worked at all... Good luck to you and welcome! Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.