r/lungcancer • u/ElodyDubois • Apr 02 '25
Seeking Support Small Cell Carcinoma
I see a lot of posts for Non-small cell diagnoses, but I was wondering if anyone is living with, or cared for someone who had small cell carcinoma, limited stage.
When my father was diagnosed one year ago today, he was given an estimate of 12-18 months with an aggressive treatment plan. He followed the plan and did chemo and radiation. It was very hard on him.
Since then, a new study came out that suggests life can be extended to an average of 24-33 months with immunotherapy. He started immunotherapy and will continue therapy for two years, as the cancer comes back within 2 years 95% of the time.
Even with treatment, this diagnosis feels like a death sentence. The treatment can extend the life but actual remission is unlikely. The 5 year survival rate for men is 2%.
Right now, dad seems happy, alert, he’s putting on weight and rooting for the lady gamecocks basketball team to bring home the championship.
It seems like when people do take a turn for the worse, it’s very quick and traumatic. I have a lot of anxiety even though he seems to be doing well today. Based on his original prognosis, he’s living a miracle.
I’d just like to hear from others who had this specific diagnosis or family affected by this diagnosis.
I can’t sleep and am just crying in my bed, searching for comfort and/or understanding. I want to be prepared.
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u/FlyingFalcon1954 Apr 02 '25 edited Apr 02 '25
I'm with WalkingHorse on this one. Enjoy...no CELEBRATE the miracle of your fathers present happiness.
I have a little story.
Yesterday I watched my neighbor who was about 45 years old leaving for work. Today I was feeling all kinds of sorry for myself because of my chemo side effects when my neighbors husband came over to visit me because he needed someone to talk to. He then told me that his wife whom I observed leaving for work never made it home because she died in a single vehicle accident on her way home.
Yes no one is promised tomorrow. No one.
Knocked me right off of my pity pot for the moment.
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u/justpinchme Apr 02 '25
Oh WOW…..always reminds me to be grateful to be here and grateful for the small things. That poor man. The fact that you watched her start her normal as hell day and then how it ended.
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u/TeenzBeenz Apr 02 '25
Awww, I'm so sorry. It's true that we're all here on limited time. We need to be grateful for every day. I'm trying!
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u/inahurrytoreact Apr 02 '25
I have sclc, be happy when he's able to celebrate the small victories and appreciate the days that you have with him. You'd be surprised how happy I am that I have days and days in a row where I'm feeling really good. When my kids call worried and sad it kind of bums me out. Celebrate your dad's good days however many there are.
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u/ElodyDubois Apr 03 '25
Excellent advice. I never let my father see me cry/worry/stress about his diagnosis. We celebrate every good scan and every pound he gains back. One concern I was verbal about: He was wasting away for a while and I threatened to ask the doctor for a feeding tube if he didn’t start drinking the protein drinks I buy him, to supplement his lack of appetite. I’ve also had loads of snack boxes delivered as he much prefers little treats over big meals. When I spoke to the doctor, he said not to be concerned with sugar and instead, encourage him to eat whatever tastes good, so long as he eats something. We’ve found a protein drink that he likes which tastes just like chocolate milk and doesn’t have the chalky aftertaste (fairlife). He was 175lbs pounds at diagnosis. He was 129 at the lowest, but would purposely wear multiple layers and load his pockets with stuff to appear to weight more.
Since the feeding tube scare, he is back up to 139lbs and has so much more energy and zest.
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u/Anon-567890 Apr 02 '25 edited Apr 03 '25
I’m so sorry you and your father are going through this. It’s not easy, I know. I’ve been fighting for 10 years with seven recurrences, but I don’t have small cell. The way I look at it, I have been given a gift. I’ve been able to prepare by getting a will and a power of attorney. I also have been given the gift of being able to tell my loved ones that I love them. People who die instantly of heart attacks or car wrecks or whatever don’t get to tell people how much they mean to them. So, celebrate the little things like the fact that he feels good in this moment. Share memories together, dance to his favorite music. We all die of something, you know. I know mine will probably be lung cancer. It is the hand I have been dealt, and I’m playing it the best I can.
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u/ElodyDubois Apr 03 '25
You’re absolutely right. I will think of you and pray for you when I put on some tunes for dad.
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u/Anon-567890 Apr 03 '25
Hugs! He’s so lucky to have you! As a parent, the hardest part will be leaving my kids, even though they are adults in their 30s with spouses and jobs and houses. Giving him permission to go is important, I believe. Might I suggest a book? It’s called The In-Between by Hadley Vlahos. She’s a young hospice nurse writing about some of her patient encounters. She is a wonderful storyteller and makes herself vulnerable also! It’s very helpful to understand hospice!
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u/ElodyDubois Apr 03 '25
Im thank you very much for the book recommendation. I will grab it this weekend.
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u/Secure-Pineapple76_ Apr 02 '25
My mom was diagnosed with sclc about a year ago as well. One mass on her left lung.
She completed chemo and radiation to treat the cancer and had preventative brain radiation as well. Her cancer has shrunk and she has had no new growths.
She does have LEMS, and that’s taking more of a toll on her than anything.
What was the condition of your dad’s cancer when it was found? Had it spread elsewhere? Did he have preventative brain radiation?
I’m glad to hear he’s doing so well. Mom’s oncologists gave us statistics, but wouldn’t put a “time” on her life as everyone is different and medicine/research has progressed so much, it’s hard to say from person to person.
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u/ElodyDubois Apr 02 '25
That’s wonderful.
Dad had a tumor in his left lower lobe and the cancer had spread to a nearby lymph node. His radiation was targeted to that area of his chest. His oncologist said he was not a good candidate for preventative brain radiation because of his age. He said the side effects weren’t worth the risk. He said, “I could ruin your life and it not stop the spread. My suggestion is to enjoy the time you have left.” He has brain scans and ct scans every 90 days to look for the spread. I’m sick with worry every time, but so far, so good.
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u/Secure-Pineapple76_ Apr 02 '25
How old is your dad? My mom is 55. Did he develop any neurological disorders alongside the cancer? How did he come to realize he had it? What were his symptoms?
The preventative brain radiation was definitely a tough decision, if it wasn’t for my grandmothers cancer history my mom probably would not have gone through with it either. It has definitely caused some memory issues, her writing is perfectly eligible, but less neat, she occasionally forgets how to spell words and seems to react slower but she is still very much herself.
Fingers are crossed 🤞 I hope your dad continues to make progress :)
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u/ElodyDubois Apr 03 '25
68 years old. He had a small stroke and stutters or can’t find the right word at times. He was a lifelong alcoholic until his diagnosis, when he stopped cold Turkey and hasn’t touched a drop since. The alcoholism affected his brain/neurological state in that he has impaired mobility and has trouble with his balance.
Dad had no symptoms. It was caught on a preventative lung cancer screening due to his 50+ years of smoking.
Yes that was a hard decision for sure. I think you guys made the right one for your mom. I still struggle with whether or not my dad should have tried but so far, no spread. The doctor did say once it spreads to the brain, we would probably discuss palative treatment.
Thank you so much for sharing! Prayers of strength for you and your mom.
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u/pedplar Apr 02 '25
Diagnosed SCLC with met to brain and spine and femers last November spent a total of 55 days in the hospital between November and January. Just went back to work last week.
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u/ElodyDubois Apr 03 '25
Hell yeah, look at you!! Inspiring! Prayers for continued improvement and health.
How old are you?
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u/pedplar Apr 03 '25
I turned 49 in January. Between November and January I spent about 50 days in the hospital
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u/KaleidoscopeGlad108 Apr 03 '25
Hi,
My father was diagnosed with lung cancer didn't do any treatments, caught too late and passed very quickly. Last February my mother was diagnosed with small cell carcinoma in left lower lobe. She had surgery to remove. She then did aggressive radiation and chemo at the same time, which put her in the hospital, she was suffering. We stopped it wasn't worth it. We did immontherapy which had little to no side effects. My mother did well for 4 months but eventually it got into the liver. She passed away January 31st. Everyone is different and depends on age, etc, but enjoy every moment you have with him. My mom was ready to go. But she went peacefully with family around. Best to you and your father.
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u/Acceptable-Goat2394 Apr 03 '25 edited Apr 04 '25
My aunt was diagnosed with SCLC in August 2023. She did chemo, radiation, and immunotherapy. She was diagnosed due to having severe pain around her lower rib cage. That pain, no matter what, would never go away. They said she had cancer wrap around a nerve bundle? She passed away July 2024, 11 months after diagnosis.
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u/ElodyDubois Apr 03 '25
That sounds so painful. I’m so sorry.
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u/Acceptable-Goat2394 Apr 04 '25
Thank you for the response. It was horrible to watch her like that. I miss her deeply.
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u/Enough_Pay8268 Apr 07 '25
My mother was diagnosed with SCLC in February 2024. She died on 1 April 2025. We got her for more than one year!
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u/ElodyDubois Apr 08 '25
I’m sorry for your loss. So wonderful you had the time to love on her and cherish the moments. That’s what I’m trying to do.
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u/ElodyDubois Apr 20 '25
Update: Latest CT Scan shows a new nodule in the other lung. The doctor didn’t change the treatment yet. Instead he wants to measure the module again in two months.
I want to go back in time and enjoy those moments before I knew it spread instead of worrying about it.
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u/WalkingHorse NSCLC T2b, N0, M0 IIA 🫁 Currently NED Apr 02 '25
I don't know what to say other than as best you can stay in the moment with your dad. Outcomes are unique for every person with SCLC. Anticipating the worst is an easy mindset to fall into. No one is promised tomorrow. No one. As hard as it is, shake off the anticipatory grief. Best to your father and you. 🤍