Glad this community exists. My 64 year old mother was abruptly diagnosed with stage four non small cell adenocarcinoma this past summer. She is a non-smoker who has lead a healthy lifestyle and had no symptoms. She is now on her second month of chemo/immunotherapy and doing alright physically but struggling emotionally and with the unknown outcomes. I think she would like to talk to someone but we don't really know the likelihood of finding many people out there dealing with stage four. Would love to chat with anyone who could relate. Thanks for being here <3
~Kelly
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Kellye28
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I'm sure others will chime in and welcome you and share their stories, but in the meantime I wanted to let you know about the GO2 Foundation's Phone Buddy Program. It's a peer to peer matching program for support. If your mother is interested she can call the helpline and ask to be matched. Our Helpline number is 1-800-298-2436
This is the webpage to read about the Phone Buddy Program: go2foundation.org/phonebuddy
Hi, Kelly. You will find many patients on this forum living with Stage IV NSC lung cancer. I am one of them (since April 2015). GO2 Foundation can match her with a phone buddy if she is interested in that, and they also will know if there are any support groups in your area. Patients and caregivers use this forum in many ways, including asking questions of others about how they tolerate a treatment or suggestions to deal with a side effect or more simply for support. I’m glad you found us.
Thank you Jennifer. I suspected that once I started looking I would find many resilient and awesome people out there. Thank you for responding and orienting me to the forum. I am so happy this resource and ability to connect exists! <3
Just wondered if your Mum was assessed for different mutations? Lots of non smokers have a mutation which might mean that they can be treated in a different way but some people aren’t assessed to see if they have mutations x
Hello! Thank you for this tip. So crucial. She has been tested and did not have the mutation. But thank you for sharing as that would be such a shame for people not to know. <3
I agree with previous recommendations to contact the GO2 Foundation for Lung Cancer. I found a great mentor there who offered great hope. I was diagnosed with nsclc, stage in, in June 2020. I am doing well and would highly recommend your mom surround herself with positive survivors. It is so important not to live in the word cancer. It's a small part of us, but not All of us. Sending love support, hope and prayer to your Mom and family. 🌸🙏💕
Hi! Thank you so much for this message, not letting yourself be defined by the illness. Love that perspective a lot. So much strength in cultivating that. Thank you for the love and support. <3 Sending much gratitude back to you <3
Great that your mum's doing ok on her treatment - many are now. Many are active and their cancer found incidentally (whilst investigating something else) and it comes as a huge shock.
There are many active on this site and Roy Castle lung cancer foundation (in the UK) and closed Facebook pages especially if she has one of the more known mutations (ALK+, EGFR+ , ROS1) who set up distinct groups in US, UK and internationally.
It can feel very lonely and isolated whereas the reality is that thousands of people are treated with stage iv.
Today is the 12th anniversary of when I turned up in A&E with strange symptoms just 2 weeks after my 52nd birthday. A few months later after surgery to remove the 7cm tumour and half left lung confirmed as adenocarcinoma (non small cell lung cancer) - I was back at work and swimming by March 2011.
However on 2/6 a dear friend passed away after complaining of a bad shoulder for months to his doctor and paying privately for various muscular-skeletal problems when it turned out to be widespread lung cancer in his spine, brain, liver and lungs. I started to research online and found his was a common occurrence and that less than 5% of cancer research was invested in lung cancer.
I restarted my swimming to improve my lung fitness and raise funds for Roy Castle lung cancer foundation - the major UK lung cancer charity- and attended their conference in Birmingham. There I met a patient advocate, a clinical nurse specialist (for GI cancer). she was stage 4, 48a never smoker and told initially she only had months, she accessed clinical trials for treatments now considered 'old hat' but she survived 4 year and 4 months which was amazing at the time. She encouraged me to get more involved in the world of lung cancer research.
Her treatments (she was EGFR+) and others have been refined and developed alongside new ones and immunotherapy and every type of treatment has changed since my diagnosis. The combinations of treatments has improved the situation for thousands of people everywhere. Online forums have enabled connections with patients elsewhere in the world.
In the UK, the majority of patients are detected at an advanced stage which is why we started a pilot lung screening programme for earlier detection.
appreciate every day and the opportunity to be involved but would love an awareness campaign that anyone can develop lung cancer - not only a smokers' disease as we've always been told but also that major improvements have been made in research, knowledge and treatments for all stages to give people like you and your mum more hope than you may think if you just 'google' and scare yourself with outdated and inaccurate information.
I do hope somebody on here who is stage iv connects with her but as others have suggested Go2 have a buddy and support system. good luck to you both. x
Hi Janette! Thanks so much have for all of this and for your efforts to raise awareness. I am astonished how many people I have heard of who go undiagnosed until late stage and that is a shocking stat from the UK. Not sure what the percentage is here in the US. But also what you say about raising awareness about the hope that there is and advanced in treatment, beyond the scary Google search. You’re making such a great point about how the narrative around this illness is stuck in an old and scary (and smoking oriented) paradigm. An interesting campaign idea.
I love swimming Thanks so much for your intel and support and helping me and my family think about this differently. <3
Hi Kelly, I was diagnosed with stage 4 non small cell adenocarcinoma in 2013. I have been cancer free since 2016. I also was a non smoker with no symptoms. Found during x-ray after an accident. So tell your mom survival is definitely possible. Surviving for nine years now.
Nice to meet you. My mom also discovered hers accidentally in an X-ray for shoulder pain. Beginning to get the sense this is common…
Congrats to you on your progress. That is absolutely incredible to hear. I am so glad to find there is so much hope to be had. It is was I was suspecting I might find here. <3 <3
Kelly, this is a great place for support. I am glad you found us. Tell your mom I am now 75 and enjoying each day more than the last. I made a playlist of my “survivor” songs to pump myself up before treatments. Looked for stories to make me laugh and maintained my faith. (Romans 12:12). Add to that a positive attitude (I believed I would survive) and you have my playbook for winning. Take the emotion of being a caregiver and you will have inspiration for writing more poetry. Sharing those feelings with others helps you as well.
My mom was diagnosed Stage IV NSCLC last November. Non- smoker, healthy lifestyle, no mutations, none of it made sense then or now - but this group, amongst other things gave me a lot of hope and light in an otherwise confusing and dark time. Happy to share and listen anytime - feel free to reach out. You are not alone in this and neither is your sweet mom!
Hi Andrea, Thank you for your message. I hear you in the darkness, and also the light in knowing we’re not alone. It sucks so much to watch someone go through this and see how alone they are in it, so a space like this is incredibly valuable. Thank you for making yourself available <3 🙂
Hi, Kelley. How does mom do with technology? If she is comfortable using zoom there are a couple of support groups I can recommend. Once a month the Go2 Foundation that sponsors this page has a gathering. Meeting others with the same disease can be incredibly empowering. I can honestly say that I’ve met some great people there. They meet the second Tuesday of every month
There are others that meet monthly, some that are specifically lung cancer centered. Also foundations like the Cancer Support Community ( CSC) and Gilda’s Club have opened their meetings up. If there is not a location near you, mom can still participate virtually. The CSC I attend is in Michigan but we have had participants from other states. cancersupportcommunity.org/...
The Go2 LC Foundation has a list of other meeting sites and you may find something near you.
Hi Denzie, these are amazing resources, thank you so much. And I'm so glad to hear that meeting with others in the same situation has been empowering. It's great to know that is possible! I will share your message with my mom. Thank you again!
Your mom’s diagnosis of Stage 1V non smokers adenocarcinoma NSCLC sounds exactly like mine. I was inadvertently diagnosed in June 2022 and I’m still in shock, having a very hard time coping with my new normal. I was 65 yo and had surgery in July, then began chemo and immunotherapy. Ive had 4 treatments of this combination under my belt with two more to go before I continue with immunotherapy by itself…. indefinitely. Although I live in NY and have amazing care, I still feel very alone, scared, and isolated. I’d love to chat with your mom if she’s up to it.
Hi Betsy, thank you so much for reaching out. It's a good thing you found this group too, just like us. I'm sure you've read the rest of the posts on this thread - they have offered a lot of hope and possibilities for connection. I'll definitely share your post and offer to chat with my mom. She is in NJ. Are you doing treatments with MSK? Sending love, hope, and resilience to you. <3 Kelly
Betsybpr, cancer is very isolating and I’m glad you found this site. There is a Gilda’s Club in NY and Connecticut and they have 5 outreach centers. You can connect with other cancer patients there. They do have a lung cancer specific support group. gildasclubwestchester.org/
If you would like a phone Buddy/ peer support person the Go2 Foundation will match you with someone whose experience is very similar to yours. I volunteer as a support person, we have occasionally gotten together with other support people via zooms. Some of them are never smokers who, like you, found themselves with stage 4 lung cancer. They will try their hardest to match you with someone who had the same treatment you are having as well. No one should have to face lung cancer alone. go2foundation.org/resources...
Hi Denzie, Thank you very much for reaching out to me and I truly appreciate all the possibilities of connection. It has taken me several months to even explore any kind of support groups but I think it will be helpful with my feelings of isolation. I would be very interested in having a peer/buddy to talk to with the same history (healthy, non smoker) and on a similar treatment plan. I don’t feel strong enough to travel to meetings while I’m undergoing chemo/immunotherapy. I look forward to hearing from you or I can contact the foundation directly. With much gratitude, Betsy
Hi Kelly, thank you so much for your kind reply. Yes, I’m very glad to have found this group as well. Although I’ve been seeing a therapist to help me deal with my “new normal,” it’s also helpful to hear others going through similar circumstances and to share my own experience with this disease. My doctors and treatments are at Northwell Health, although my second opinion was at MSK. I was very impressed by both centers. Please share my love and care with your mom ~ Betsy
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Thanks so much for your intel and support and helping me and my family think about this differently. <3
Mom dx with stage 4 lung cancer
stage 4
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