AngelL Posted September 29, 2020 Share Posted September 29, 2020 Hello, I am 41 and I was diagnosed with NSCLC Adenocarcinoma Stage 4 on July 31st of 2020. Yeah, 2020 is going above and beyond! Anyone else my age with this here? Info on a 41 yr old with this is non-existent! I'm a married mother of 2 boys, aged 20 and 5. I work full time and also help my husband with our side business working on/selling solely Land Cruisers. Throw in a full house remodel that we are on the tail end of and all I can think is I don't have time for Cancer! I had Gamma Knife radiation on my brain within a week of diagnosis. I start my 1st chemo treatment (with an immunotherapy drug on top) tomorrow. We as a family had just finished a 10 year plan and were on the cusp of being basically debt free and planned to start having fun instead of working all of the time this year so...yeah. Thanks universe! I'm scared, I'm Angry, I'm gonna beat this, What if I don't, I'm angry, I'm scared, I'm ok... Link to comment Share on other sites More sharing options...
Lindsay Posted September 29, 2020 Share Posted September 29, 2020 Hi AngelL First off, I'm sorry that you're now part of this club. Secondly, I echo your sentiments of not being able to find anyone our age-ish going through this. I'm 32, and was diagnosed with Stage 3B adenocarcinoma at the end of last year. I've been through radiation, chemo, and started my immunotherapy at the beginning of April. It's hard looking at the stats of this disease, they're dire, but remember we're different. We have age on our side, or at least that's what I like to think. I stumbled across Lungevity during one of my MANY google searches on what my chances were to beat this thing. I found this article https://lungevity.org/news-blogs/blogs/10-steps-to-surviving-lung-cancer-from-survivor and for some reason it really struck me. I keep it on my phone as a constant reminder that I can only do so much, and constant worry isn't going to help. I also like to check in on the groups here with people are going through the same treatment as me. It gives me hope to hear their stories, one way or another we are going to be a statistic in all this, why not think that we'll be the lucky ones who make it? It's super scary, I know, but there is a whole group of supporters here who can be an ear to cry to, a place of hope, and most importantly connection to someone who understands exactly what you're going through. Link to comment Share on other sites More sharing options...
GaryG Posted September 29, 2020 Share Posted September 29, 2020 Hi Hi AngelL: Unlike Lindsay I am very old. I am also determined and hopeful I will beat it. You are half way there with a great attitude. From what you wrote it looks like you are a doer and a person who accomplishes things. So don't be sad, mad or scared first because that does not get you anywhere and second because you need that time to fight cancer. Please visit often and share your experiences good or bad. We are here able and willing to help if/when we can. Link to comment Share on other sites More sharing options...
Amy McMillim Posted September 29, 2020 Share Posted September 29, 2020 Hello there. I just turned 43. I have stage 4 Signet ring cell adenocarcinoma of the lung. I have 2 boys also....age 20 and 15. I work full time and was diagnosed last April. It’s been a long year but I am now on a clinical trial and doing very well! I try to go about life as normally as possible. Feel free to reach out to me at any time. It’s always good to have friends who understand where you are in life and your situation!! Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 29, 2020 Share Posted September 29, 2020 Hi AngelL, When I was first diagnosed at the age of 51 in 2018, I looked everywhere to find some like me- never smoker, total shocker. Since you’re in the younger group I’m wondering if you had something called biomarker testing as there are several sub-types of adenocarcinoma. Most of us are diagnosed at Stage IV and for an unknown reason people under 50 seem to have brain mets BUT it’s not a predictor of prognosis. Due to scientific advances, there are many of us living with lung cancer. Scared and angry comes with the territory-we’ve all been there. It’s a safe place to say anything here. We get it. Let us know how we can support you. Michelle Link to comment Share on other sites More sharing options...
AngelL Posted September 30, 2020 Author Share Posted September 30, 2020 2 hours ago, Lindsay said: Hi AngelL First off, I'm sorry that you're now part of this club. Secondly, I echo your sentiments of not being able to find anyone our age-ish going through this. I'm 32, and was diagnosed with Stage 3B adenocarcinoma at the end of last year. I've been through radiation, chemo, and started my immunotherapy at the beginning of April. It's hard looking at the stats of this disease, they're dire, but remember we're different. We have age on our side, or at least that's what I like to think. I stumbled across Lungevity during one of my MANY google searches on what my chances were to beat this thing. I found this article https://lungevity.org/news-blogs/blogs/10-steps-to-surviving-lung-cancer-from-survivor and for some reason it really struck me. I keep it on my phone as a constant reminder that I can only do so much, and constant worry isn't going to help. I also like to check in on the groups here with people are going through the same treatment as me. It gives me hope to hear their stories, one way or another we are going to be a statistic in all this, why not think that we'll be the lucky ones who make it? It's super scary, I know, but there is a whole group of supporters here who can be an ear to cry to, a place of hope, and most importantly connection to someone who understands exactly what you're going through. 32! You are brave! I've avoided looking at stats. Luckily my husband loves research so he has been my advocate with the medical teams and has only filled me in on positive news. Ive accidentally seen some grim numbers and have avoided the subject thus far. LoL. I flip flop between thinking "I've been through a lot, I'm tough, I will beat this"! to hiding in my room/car having pity parties and thinking why me? But I'm nice?....Then I'm riddled with guilt for such thoughts because innocent children get Cancer (and worse) every day. Physically I have no symptoms so I have pretty much been in denial. The port insert was tough for me mentally. Having a foreign object in my body was an adjustment I'm still working on. Now with chemo tomorrow I figure I might as well accept it, put on my big girl panties (which is easy because mine are by no means small) and FIGHT! I'm thankful I finally admitted I needed support and joined. Hopefully I will become strong enough to also be a help others as I see so many here are! Link to comment Share on other sites More sharing options...
AngelL Posted September 30, 2020 Author Share Posted September 30, 2020 1 hour ago, Rower Michelle said: Hi AngelL, When I was first diagnosed at the age of 51 in 2018, I looked everywhere to find some like me- never smoker, total shocker. Since you’re in the younger group I’m wondering if you had something called biomarker testing as there are several sub-types of adenocarcinoma. Most of us are diagnosed at Stage IV and for an unknown reason people under 50 seem to have brain mets BUT it’s not a predictor of prognosis. Due to scientific advances, there are many of us living with lung cancer. Scared and angry comes with the territory-we’ve all been there. It’s a safe place to say anything here. We get it. Let us know how we can support you. Michelle I did get the biomarker test done. We were hoping for EGFR since it is most treatable with the targeted therapy but I wasnt a candidate for the targeted therapy. I did have 5 brain mets. They responded well to the radiation. I had one new spot on follow up MRI but all of my lesions were so small (1.5cm or less) my doctor seemed very confident about the treatment! The doctor did recommend another test be done on the biposied tissue but I cant remember what? My husband is more up to par on the science of it all. Ive honestly avoided even trying to learn it and have been in denial the past 2 months. My brain has been spinning. I can barely match my socks at the moment. (That isnt a side effect of the brain tumor I had trouble before this. HA) I'm glad I joined the group at my husbands insistence. I already feel much better talking to people who have been through all of this. Link to comment Share on other sites More sharing options...
LauraG1 Posted September 30, 2020 Share Posted September 30, 2020 Hi! I hear you. I was diagnosed at age 40 with a 6 and 2.5 year old via a freak car accideny. That was over five years ago. It can be a lot to take in. I wanted to make sure that you had the complete results from NGS testing (next generation sequencing) before you start your treatment course. Given your age, the odds are VERY good that your cancer has a genetic marker that would mean chemo and immunotherapy is a bad choice. Regards, Laura Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 30, 2020 Share Posted September 30, 2020 Yes Laura, very important point! All of the standard biomarkers on the first go round were negative while the Next Generation Sequencing identified the ALK mutation. Good advice- trust but verify the biomarker results. Link to comment Share on other sites More sharing options...
LouT Posted September 30, 2020 Share Posted September 30, 2020 Hi AngelIL I'm sorry to hear about your diagnosis, but glad you found our forum. There is a large community here with a wealth of experiences that can be shared with you along the journey you're on so please feel free to ask questions and come here anytime to vent, when needed. While I can't help you regarding chemo (my treatment was surgical) we have all gone through the shock, fear and anxiety that is part and parcel of this disease. There are some really great stories of survival on this forum. There is a forum called "Lung Cancer 101" that can offer you information on a number of topics you may be interested in. You can find it here. Please ask any questions you may have and you'll hear from our folks pretty quickly. Stay strong and keep pushing, we'll be there with you. Lou Link to comment Share on other sites More sharing options...
AngelL Posted October 1, 2020 Author Share Posted October 1, 2020 13 hours ago, LauraG1 said: Hi! I hear you. I was diagnosed at age 40 with a 6 and 2.5 year old via a freak car accideny. That was over five years ago. It can be a lot to take in. I wanted to make sure that you had the complete results from NGS testing (next generation sequencing) before you start your treatment course. Given your age, the odds are VERY good that your cancer has a genetic marker that would mean chemo and immunotherapy is a bad choice. Regards, Laura Hey, thanks for the info. I did have a Guardant 360 Blood Biopsy which showed no detectable markers that had an FDA approved therapy. The markers that did show up were at less than 5%. We were hoping for EGFR but it came in at only 3.3%. Im waiting on a test for mutations from the tissue biopsy all labs are slow due to covid so both doctors recommend I start chemo and keytruda. We were hesitant because we read previous chemo would lower effect of targeted therapy if thats an option later and that the blood biopsy isnt as accurate at detecting markers as the tissue biopsy. At 2 months in I was scared to keep waiting and also scared that chemo was my only option. The inaction was driving me crazy though! We did get a 2nd opinion from a lung specialist at Emory university. One of the largest most reputable hospitals in Georgia so that made me feel a little better. 1st chemo treatment was today. Hoping for minimal side effects and positive reactions to meds. Link to comment Share on other sites More sharing options...
Lanny Posted October 2, 2020 Share Posted October 2, 2020 AngelL I also go to Emory getting 6 Chemo treatments one every week & then CT scan to see if the Chemo is working Link to comment Share on other sites More sharing options...
AngelL Posted October 3, 2020 Author Share Posted October 3, 2020 20 hours ago, Lanny said: AngelL I also go to Emory getting 6 Chemo treatments one every week & then CT scan to see if the Chemo is working I may see you around! I will be back there in about 4-6 weeks to scan and see if my brain mets have responded to Keytruda and then find out if i get more radiation or....? Link to comment Share on other sites More sharing options...
LouT Posted October 3, 2020 Share Posted October 3, 2020 On 9/29/2020 at 8:33 PM, AngelL said: 32! You are brave! I've avoided looking at stats. Luckily my husband loves research so he has been my advocate with the medical teams and has only filled me in on positive news. Ive accidentally seen some grim numbers and have avoided the subject thus far. LoL. I flip flop between thinking "I've been through a lot, I'm tough, I will beat this"! to hiding in my room/car having pity parties and thinking why me? But I'm nice?....Then I'm riddled with guilt for such thoughts because innocent children get Cancer (and worse) every day. Physically I have no symptoms so I have pretty much been in denial. The port insert was tough for me mentally. Having a foreign object in my body was an adjustment I'm still working on. Now with chemo tomorrow I figure I might as well accept it, put on my big girl panties (which is easy because mine are by no means small) and FIGHT! I'm thankful I finally admitted I needed support and joined. Hopefully I will become strong enough to also be a help others as I see so many here are! AngelL, You have already helped others. Every time we share others get to learn while different folks get the chance to reach out and share what they know from experience. Keep on going and don't let the "pity parties" bother you. Leave that table and walk back to your family and your life. You'll have a team of experts working on your behalf and a great group of people here to help support you along the way. Lou Link to comment Share on other sites More sharing options...
Suzanna Posted October 5, 2020 Share Posted October 5, 2020 Angel, I am so very sorry for your recent diagnosis and what you and your family are going through. My husband was just diagnosed in early September, and at 53, his kids are all grown. There is so much that does not make sense when we hear this news and the shock takes some time to settle in. The BEST thing that you can do is spend time on this forum, talking to people who are experiencing this first hand. It took me a few weeks to find it and I'm the researcher, so like your husband, I was the one spending miserable hours on Google, digesting way too many irrelevant statistics. I hope you have a great relationship with your oncologist, because that will be key. We were relieved to hear him say that statistics leave out a lot of important information, they are outdated, and treatment is changing and improving by the day. If you haven't had a chance, check out the ways in which Lungevity supports advances in treatment - it is impressive and will assure you that you are in the right place. Your spirit shines through in your post, so I know you will be fighting hard and you have a whole new community behind you here! Link to comment Share on other sites More sharing options...
Lisa Haines Posted October 6, 2020 Share Posted October 6, 2020 So sad and sorry anytime I hear of a very young person being diagnosed with this horrible disease. NOT that it's every easy at any age, but it always bothers me more when patient's are very young. Hoping each and every day you'll be feeling better and that you'll find treatments that are very effective for you. There are more and more late Stage LC patient's living longer lives every day! I was in my early 50's when diagnosed and it was a total shock, no warning until it spread to my brain and caused Neuro changes. Never to this day have I even had a cough or any lung symptoms and I'm not 5 1/2 years in. Thanks to be doing well -- Stable and off all treatments. I was determined to beat this and still am, even though there is not "technically" a cure for me at this time. But, as long as I can remain stable I'm hoping every day for our cure to come! Wishing you the very best.... Link to comment Share on other sites More sharing options...
Steff Posted October 6, 2020 Share Posted October 6, 2020 AngelL, I'm a bit late to the party, but wanted to echo the welcome you have received from everyone else. I'm sorry to hear about your diagnosis. Unfortunately, it is becoming more common for younger folks to be diagnosed with lung cancer. During my 1st LUNGevity Survivorship Conference, I was surprised to see many people my age (40 at the time). I assumed they were caregivers like me, but I soon realized that they were not caregivers, but the warrior. I even saw someone I went to high school with who has NSCLC. While my experience taught me that it is more common for younger patients to have certain biomarkers, that is not always the case. Coming from a caregiver whose mom was diagnosed when the grim statistics were more accurate, the outlook can be discouraging. However, I've always had the philosophy that if 1 person can make it, so can my mom. My mom was diagnosed nearly 5 years ago and has survived her initial diagnosis and 1 recurrence. Luckily, her recurrence was diagnosed after the popular immunotherapy + chemo triplet was FDA approved. My mom had a great response to the triplet and has been lung cancer free for over 3 years. While I agree that you are too young for a lung cancer diagnosis, I agree with Lindsay - maybe being young at diagnosis will be to your advantage. Please know we are here to support you! Take Care, Steff Link to comment Share on other sites More sharing options...
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