I'm new to this site, was diagnosed with Stage IV NSCLC adenocarcinoma (EGFR mutation) in June 2021. I had SBRT for 3 brain mets, which seems to have taken care of those bastards. I started on Tagrisso pretty soon afterward and am still on it. I had an upper left lung lobectomy and a wedge resection of the lower lobe to remove the primary tumor, as well as 14 lymph nodes (2 were positive) Dec 2021. I know surgery is not the usual treatment plan with Stage IV, but for me it seemed like a good idea. Brain MRIs and PETs since surgery all are NED, which should make me happy, right? I mean, this is all I have wanted since I got diagnosed. How come it's still hard? I thought if I ever got to this point all I would feel was joy and I could go back to life like it was BC. And although I am joyful and grateful that I can walk my dog and ride my bike and physically feel good, I also struggle with how to move forward. Am I supposed to feel normal now? Just go to work everyday and focus on the same normal people stuff? A little over a year ago I felt like I was looking death in the face. And now I just go to work? I feel crazy sometimes, like I just lived through this trauma and sometimes I can be happy and sometimes I am wailing and sobbing for what exactly, I don't know. How do I not think about cancer and not worry about dying from it? Is there anyone out there with Stage IV that had surgery like I did? Is there anyone out there with Stage IV that can tell me how they were able to move forward? I appreciate any advice you might have. I've been looking for a local support group unsuccessfully, though I do have an individual therapist and a psychiatrist.
NED means I should feel happy, right? - Lung Cancer Support
NED means I should feel happy, right?
I started my journey in 2018 - I get my 4 1/2 year scan next week. All have been clear so far but I have the never ending anxiety leading up to it as usual! I describe to therapist who I see that I feel like I live 2 parallel lives everyday, one that people see and the other I feel. I remind myself I am still here, it could have been worse, I should seize each day! Some days it works and others it doesn't. I feel it is a constant battle as well but one that I am trying to win!!! Enjoy the good days and find something special about each of them! Hopefully there will soon be more good ones than less!
hi Mel I was stage 3 and I did the surgery chemo and radiation they say I am NED I kinda want them to say I
Cancer free but I guess they use that other term. It doesn't really comfort me cause I still feel like at any given moment things can change but I think you r doing good and they sound like they got it all my surgery was in 2016 and I still sometimes don't feel like it's over I guess we have to just accept that we're healed I try to just not think about but I think by you doing the surgery you got this meaning you are going to be ok!!!!!
It's so hard! Wow, 6 years out of surgery now for you. I wonder if I will make it to 6 years out. Thanks so much for sharing your experience with me.
As of June 4th I'll be 7 years I had a pain in my lower right rib area right away your mind goes right to oh s*** I got another tumor turns out something to do with my gallbladder it just sucks that you never feel unnerved I have a very good oncologist so he did another pet scan just to just to settle my nerves now they want to cut that out and have to do the surgery I'm scared to death of surgeries it's just human nature to worry I say a prayer every day I wake up thank you for waking me up but yeah it's a scary thing to go through
Hello Mel,
Miranda from GO2 here. I have a Phone Buddy (peer who volunteers to talk to others who are diagnosed) who had a similar situation to what you are describing with treatment. She likely has some insights on how she copes she can share if you want to talk to her. If you are interested you can fill out the phone buddy form on GO2 Foundation's website: go2foundation.org/phonebuddy
GO2 can also help you find a virtual support group (via Zoom) if there isn't one in your area. Feel free to call or email our support line at 1-800-298-2436 or support@go2foundation.org if you would like our assistance with this.
There are a lot of very insightful and caring people in this community who I am sure will continue to chime in to this trend, but from my experience supporting this community I will say there isn't a right way to feel in this situation. The best you can do is honor your feelings by recognizing them and exploring what might drive you to feel more fulfilled given everything you have been through/ are experiencing. For some people volunteering and becoming an advocate is one way to make sense/ meaning out of what you experience(d).
Thank you Miranda. I am going to try out the new virtual support group that I found on the Go2 site. If I feel I need something more I will definitely check out the buddy program. I appreciate your insight.
I have not been stage 4, but I have had lung cancer. I started my cancer journey almost 10 years ago when in 2013 I was stage 2 and my upper left lung lobe was removed. In 2018 the right upper lobe was removed for stage 1. Both times it was non small cell lung cancer, it was squamous cell. The doctors will never say cured, they will only say no evidence of disease. I just try to keep a positive outlook, and tell myself that every day I wake up is a good day. All you can do is keep moving forward.
you are the first post I read with squamous cell like me. I had right upper lobe removed in February. Stage IB with peri neural invasion as well. I have heard squamous cell very resistant to treatment. I also haven’t talked to anyone with removal of two upper lobes. How is your stamina now? Shortness of breath?
That's incredible, you're doing it with 2 lung lobes removed! That's amazing. Thanks for sharing your experience. I truly admire you!
Surgery was never an option for me but I am 12 years out with stage 4 lung adenocarcinoma. NED is the best I ever hope for. I prefer No Evidence of Active Disease though. I will always carry the scars radiation and chemo caused. There is no part of my life that hasn’t been touched by cancer. It’s a bell that can’t be unrung.
I still have annual CTs. Sometimes a new ground glass nodule pops up but nothing cancerous so far. When those occur my doc increases CT schedule to every 6 months until there are 2 years without change.
Over the years I have learned to compartmentalization the cancer anxiety. It’s never far from my thoughts but I’ve learned that time spent worrying is more time I can’t get back. I try to shift my focus away from worrying about dying and focus on living.
what you're describing is so common especially when cancer patients finish their treatment - having had regular appointments/check ups/treatments it can feel almost like abandonment so the sense of loss/is this it? are quite normal.
I had my left upper lobe removed and 7cm adenocarcinoma in Dec 2010 - not stage iv - but have been involved in lung cancer research for many years. NED is a good term and one that is usually given for advanced disease but know it can be hard to celebrate if we fear recurrence at any time. I found the books 'anti-cancer - a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman helped me contextualise what had happened. We all need space and time to grieve for the life we might have imagined but rarely have it if throw into treatment regime or for those of us like, thrown quickly into annual check-ups having to cope mentally with the anxiety of waiting for a year if we feel a bit 'off' and imagining the worst especially since healthcare services have changed so much since the pandemic.
Having lost a dear friend suddenly in June 2011 whilst I was recovering from my surgery and diagnosis which I had in Jan 2011 I decided to help as best I could - initially with fundraising for lung cancer research with my swimming which improved my lung health at the same time. From that came an invitation to attend the UK's major lung charity conference which I attended and the organisers thought I was a fundraiser not appreciating I was also a patient. I attended a workshop on 'feelings' and for the first time met other patients and their relatives (oct 2012) and realised my experience had been quite different from others in so many ways - I was encouraged by one of the patient advocates to get more involved which I did the following year by joining a clinical studies group. I attended counselling after that as felt I hadn't really considered the impact of my diagnosis and treatment on my life and outlook - I was self employed (and still am) and had rushed back to work for financial reasons but wasn't feeling as 'fulfilled' as I'd hoped. I found giving back, getting involved and learning much more helped me in very different ways. over the years since I've lost several colleagues (the nature of being immersed in cancer research and advocacy) and several family members - all suddenly and unexpectedly and come to view cancer a little differently than I used to. The counsellor I used to see was experienced in PTSD with the armed forces and dealt with a lot of complex cancer cases - several of which were lung cancer - and said it was quite common to feel the 'is this it?' question and for things not to ever feel the same. He suggested Viktor Frankl's book - 'man's search for meaning'. I found talking to a counsellor really helped me - perhaps it might help you too? good luck.
Thank you so much for this! I have also been thinking that I want to be more involved in making a contribution somehow with cancer and have thought maybe becoming involved in fundraisers and organizations as you have described would be a good thing for me. How did you first get involved in fundraising? Did you contact a local organization or attend a local event? I would appreciate your insights. I have been thinking this is a way to help me heal and move forward, even when I have to take steps backward.
I looked online when we lost my friend and reading online patient forums back in 2011 made me angry that many were detected too late for treatment to be effective so doing something to raise funds and regain my fitness helped me use the anger as energy to do both... Over the years I've signed up to newsletters for people wanting to be involved in the UK they come through macmillan, Cancer research UK, people in research, NIHR, Roy Castle lung cancer foundation and universities/hospitals/research centres. I found once I became involved, I'd be invited to conferences or events, get chatting to others who'd send me details of more things to learn or comment on - you don't have to become a scientist! researchers and clinicians need service users, patients and carers to comment on their ideas for studies, information that would be given to patients to comment on whether it explains in plain English or understandable terms, suggest ideas to recruit for their studies or publicise the studies or take part in committees about the trial. In US, I think Go2, American Lung association, ASCO and several other major organisations (cancer and respiratory) involve patients - look out for terms like advocacy track, advocate support, get involved, how to help us boxes on their websites.
Several patients find it cathartic and therapeutic to become ambassadors for cancer charities to buddy up with other patients/support them online, phone or in person groups, others prefer to collect money/charity collections at events, others take part in fundraising activities directly - there's no single way - but I've met some amazing people, made wonderful friends, become even more respectful of healthcare professionals who constantly strive to improve services, humbled when I receive invitations to contribute to events, learnt so much about life, cancer, lung cancer, treatments and resilience and hope that I'm making a worthwhile contribution to improve future situations for others yet to be diagnosed or treated. It's a whole world I knew nothing about before despite in the UK patient/public involvement in research having gone on for years so I've learnt from others much more experienced than me, bring my own professional/career skills as well as lived experience and know I'd really miss it now.
Many events and contributions are on a voluntary basis, others pay for travel, accommodation, expenses and a few pay for 'time'. there is a wide variety of patients/carers involved in these opportunities who, even if they've had different cancers, share a common lived experience and a common supportive bond.
There are so many different ways to get involved so even if one way might not appeal, there are other ways - so contact a few organisations, see what might be possible, many offer training courses in person or online on how to overcome any confidence issues when facing a group of scientists, researchers or clinicians and speaking up as an equal voice and helping them appreciate the patient/carer perspective in every aspect of cancer care. Good luck.
Thank you!
Hello Mel,
I was just diagnosed with stage 2 Adenocarcinoma of the upper left lung in July 2022. I was 49 years old at diagnosis. I went through four rounds of chemo and will have a lobectomy and, likely wedge of lower lobe, in November. And then what? I don’t know. And similar to what you have expressed, that’s a heavy weight to carry. Like others have mentioned I go back and forth between extreme optimism to outright fear. And my conclusion is that’s ok. I have great people in my life that give me a place to talk about those feelings and then I force myself to put it away. This experience has shown me that if I open my eyes wide there are blessings to be found everyday. Some days it’s hard but they are there. And I also remind myself that any of our lives can change in an instant. That helps me to appreciate today. My heart goes out to you. Know that you will be on my mind moving forward and I wish the best for you. You are not alone.
Elise
Hi Melly_Mel
I read your post a few days ago and immediately suggested my husband read it. He is stage 4 NSCLC, diagnosed in March 2021. He's had a brilliant response to immunotherapy, and is currently NED, but he can't (of course) get back to life BC. The way you described your feelings is exactly him. Thank you for sharing this.
Sarah x
You're not crazy feeling this way. Or at least if you are, so am I! Thank you for articulating something that I've been struggling to articulate myself; it really helped me.
At times I've felt like I just need to get a grip/ get over myself/ pull myself together and appreciate how well I'm doing. But that way of thinking mostly just made me pissed off with myself!
I've has a few sessions with a therapist, and the summary goes something like:
- it's a real grieving process...for how things were, for what could have been and now might not be possible etc. The grief stays, but it gets easier to cope with over time
- it's OK to be both grateful for how you're doing AND to be sad about being on this path at all. Both are valid and real. Instead of saying "I'm doing brilliantly BUT I'm often sad and don't get it" try "I'm doing brilliantly AND I'm often sad because I obv wish I wasn't going through it at all". Balancing the two is a work in progress.
Really hope this helps. Be kind to yourself. You're not going mad, what you're feeling is normal.
This is really brilliant. Thank you for sharing it with me!
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