r/lungcancer • u/ayanaa25 • 17d ago
How often do people outlive their 12 months prognosis?
My father was given 12 months prognosis. He's getting immunotherapy along with chemotherapy. He has Non small squamous cell carcinoma lung, stage IVB. Please share your stories. Nothing makes sense right now, I'd be very happy to see cancer-survivors thriving in their lives.
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u/missmypets 17d ago
My stage 4 lung adenocarcinoma was diagnosed in October of 2010. At that time they said I might live 10-15 months. I travel a lot and I advocate a lot.
When diagnosed nearly 15 years ago the stage 4 survival rate was 1%. I've watched that double, and double over again several times. The immunotherapy is a major reason survival rates are changing.
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u/bluebirdjoan 17d ago
What contributed to your success? My husband is stage 4 lung adenocarcinoma.
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u/missmypets 16d ago
Honestly, I have no idea. I did everything they told me not to do- ate refined sugars, drank an occasional cocktail, no balanced diet.
I'm in a study called the Network of Enigmatic Exceptional Responders with NIH and Harvard Med. They haven't figured it out yet but they're looking at my DNA and that of 100 others trying to figure it out.
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u/Recent_Note_5272 15d ago
May I ask what Mutation you have ?
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u/missmypets 15d ago
They didn't test for mutations in 2010. The only known, targetable one was EGFR. You had to fail a course of platinum based chemo before they would test for that. And at that time there was no differentiation in exons, it was all EGFR.
If it helps, I've know people who were treated that way survived since 2011. They had chemo then Tarceva or were in clinical trials for ALK and ROS1.
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u/MindlessParsley1446 17d ago edited 16h ago
Hi, there. If you search the term "success stories," you will find a bunch of posts about this very topic. Take care 🙂
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u/wildatheartYVR 17d ago
Just wanted to share that I’ve found a lot of hope in this sub. I hope you do as well. Wishing you and your father all the best during this scary time.
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u/bluebirdjoan 17d ago
Following. My husband is just diagnosed stage IV non-small cell lung cancer. Hang in there.
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u/mumbaiphotographer 17d ago
My father was diagnosed with stage 4 NSCLC with bone metastases which had lead to his L4 L5 collapse.
He has been on dacomitinib and denosumab injections for bone strength. Its been two years now and he is healthy to stay the least, still on medications for targeted therapy.
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u/Phoheavenssake 13d ago
Really glad to hear he’s doing well. Can I ask if the injections are worthwhile? My mum’s suffered vertebrae collapse as a result of bone mets, and the oncologist says she can take xgeva injections for bone strength ‘if you want’. We can’t decide.
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u/Bac081989 17d ago
My mom was diagnosed with small cell lung cancer in November 2023. We were told she had 6-9 months with treatment or 3-6 without. She ended up stopping chemo after two rounds because she almost died from sepsis. That was March 2024 when she entered hospice! Here we are August 2025 and doctor are baffled why she is still alive and her cancer has shrunk to one single tumor (she’s about to have radiated). She’s truly a miracle case though! Doctors are baffled. This is to say she’s an exception, however, doctors knowledge only goes so far.
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u/Direct-Di 17d ago
No one's ever given me a prognosis except surgeon said stage 1b, should be a cure (no guarantees).
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u/hummingbirdyogi 17d ago
My mom was diagnosed at 43 with non small cell stage 4. She lived until she was 53. Lots of grandchildren born and happy memories in between.
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u/Cocacola688 15d ago
May I ask what were the circumstances? Did she take chemo and immunotherapy to get those 10 years? And did it stop working towards the end of her life?
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u/hummingbirdyogi 15d ago
She died in 2015. She did drug trials for Tarceva ( not sure spelling) also another one I’m not remembering. She did chemo and radiation. By the end, it was Christmas Day - a family get together…. And half her face started drooping suddenly. It was leptomeningeal cancer- brain Mets…. There was an option of chemo but it would have been rough go. She got hospice and died end of March. Hopefully treatments are better now.
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u/bluntbossbex94 16d ago
Treatments have advanced SO MUCH over the past 10-15 years. My mom was diagnosed in January of this year with stage 4 nsclc egfr positive. Theres a huge chance your dad will WAY surpass that. Always advocate for him and never b afraid for a 2nd or 3rd or 10th opinion, there are things out there that will help off set the cost. Md anderson is wonderful, thats where my grandma went and she lived for 11 years (cancer didnt kill her, a surgeons mistake did) always look for the new treatments and best of luck to you and your dad and family. Much love friend
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u/Prize_Chance_8764 16d ago
My mother was diagnosed with stage 4 in 2018 at the age of 73. She just turned 80 in April. Chemo and Keytruda stabilized her lung cancer for several years, even after she stopped treatment due to Keytruda causing severe arthritis for her. Last year she developed a couple of different kinds of cancer (pancreatic and biliary duct) and went through treatment again until the chemo stopped working. If she had not developed other cancers, her lung cancer would still be controlled.
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u/DenseEggplant487 Stage IV NSCLC - EGFR Exon 19 Deletion 17d ago
Does he have a targetable mutation? That changes everything!
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u/owlcart 16d ago
My mom (currently 75 y/o) was diagnosed in July of 2023, stage IV Squamous NSCLC (primary tumor roughly 6x7cm in lung, nodules up mediastinal area, lymph involvement, and brain met). She chose not to ask her oncologist (or her second opinion oncologist at a NCI cancer institute—highly recommend this!) for a prognosis time-wise, but he hinted to me privately early on that we could likely expect about a year.
She started treatment (targeted brain radiation, carbo+taxol chemo for 6 cycles, keytruda which she is still receiving) almost exactly 2 years ago. She got consolidative SBRT radiation to her primary site in April of this year even though it wasn’t very “hot” on a PET scan and had shrunk to 2x2cm—because she’s fortunately responded so well to treatment cancer-wise. Everything else disappeared and has stayed gone for nearly a year and a half. Her brain MRIs show some suspicious tissue but have been stable for over a year. She had a set of body scans 2 weeks ago that showed her primary tumor is breaking apart and shrinking even further.
Don’t lose hope! Advocate, try to have gratitude for every single moment (even the hard ones), take it day by day as much as you can. The new normal for became that there is no new normal, necessarily—we’ve certainly had lots of bumps in the road (still do). Everyone’s journey is different, but treatment even in advanced stages has come a long way from even a few years ago.
Best of luck to you and your dad 🤍
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u/akron-mike 15d ago
Having cancer isn't what it used to be. Success is everywhere. There's hope for sure.
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u/TheRealJustCurious 12d ago
We found out from an incidental finding my husband had cancer on May 7 of this year. It took until July 14th to see an oncologist for a treatment plan because finding the primary source was difficult due to widespread metastatic disease. His oncologist told us he’d be gone by September if he didn’t get treatment, but he’d see next spring with chemotherapy alone, and with immunotherapy, he’d be looking at ‘26, ‘27, ,28. He seemed confident, and yet when he left the exam room, I actually said to the nurse that i felt like I was just delivered the best sales job I’d ever witnessed.
Later I convinced myself that he was a maverick, someone who knew how to make things happen. I now believe he was simply arrogant and prioritized profit over patient care. My husband had two chemotherapy treatments and 2 immunotherapy treatments on July 21st. He had no problems on day 1-3. Day 4 his oxygen started to drop late in the day. On day 5 I took him to their urgent care team and it’s obvious now he got pneumonitis. The weekend at the cancer institute was an absolute nightmare. No one was listening to me as I shared my concerns that he was dying. I even had an attending physician tell me that he wasn’t even close to that, but when and if he got to that point they’d be sure to let us know.
I begged them to see the palliative care team for two days, and they assured me we’d see them on Monday. (He doesn’t get those services on a weekend???? 🤬🤬🤬🤬🤬.)
They scheduled him for back surgery on that Monday without our consent. When I found out, I was like… “WHAAAA? He’s in NO condition for surgery, people. He’s dying!”
He died later that evening on July 28th. He suffered excruciating pain for three days. They did not honor our pain regimen when we got to the hospital, but started something new, which resulted in my husband NEVER getting ahead of the pain again.
The whole experience was a shit show. I feel like we experienced “When Breath Becomes Air” in four days. (The book about the lung cancer doctor who got lung cancer himself and discovered what life is like with a bunch of specialization in care with NO doctor overseeing the whole person.)
I feel like we were exploited for profit. My husband had no business doing any kind of treatment, and we should have been afforded the opportunity to discuss palliative care in a frank discussion about how invasive his cancer was. No one went over his pet scan with us, EVER. No details about how invasive his cancer was in 7 areas of his body. The only serious discussion of that came from me submitting the report of his scan into ChatGPT. 🙄 No discussion of where his bone fracture actually was. (By day 10 from his treatment plan being shared, we discovered at the urgent care that he had a fracture in his spine and was at severe risk of being paralyzed if he twisted left or right or bent over to touch his feet. Really? )
The problems go on. I will be escalating our experience to the highest levels of this organization. No one should have to go through what we experienced.
In the end, I am grateful his treatment hastened his passing as 3 days of excruciating suffering are better than three months or more. He lived life to its fullest, even working at the job he loved all the way up to July 18th, the Friday before his first treatment the following Monday. TBH, It felt like an expensive Dr. Kavorkian moment.
I miss him, and cancer sucks.
Oh, and get this… I was told by a family member at his funeral that his family has a gene for lung cancer that has been discovered and that his cousins and their children are currently being tested for the gene. (Non-smokers) It makes me wonder if we had known this earlier if it would have made a difference for him to get better care and a better result , or if that knowledge would have only caused him even more suffering than what he already experienced.
Given the choice, he would have chosen to live life to its absolute fullest until the end, which is basically what happened.
I miss him. 😭💔
Sorry for the bummer share, but it’s better to know the good, the bad, and the ugly.
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u/mariposa_azul72 17d ago
My mom was diagnosed in March. I know everyone can’t afford to do this but I told her to get a second opinion at MD Anderson. They did chemo with immunotherapy and she was able to get treatment at her home oncologist and do check ups and tests at MD Anderson. She just had her scan after 4 rounds of chemo and her cancer tumors have shrunk significantly, some have even disappeared. Her cancer is now considered “controlled”. Her oncologist in her home state had told her when she was diagnosed to essentially make a bucket list and he could make her comfortable. MD Anderson saved her life.