Your Cancer Story
You're not alone in this. Here, people affected by cancer come together to share real experiences — what helped, what was difficult, and what they want others to know. Every story matters, and yours will too.
One step at a time
3 rounds into AC chemo and nobody warned me the fatigue would be different from regular tired. This isn't tired. This is being pinned to the mattress by something invisible. I slept 17 hours yesterday and woke up exhausted. My hands are tingling, food tastes like copper, and I cried at a paper towel commercial. But I got up and ate half a bowl of soup. Counting that as a win today.
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Stage 4 NSCLC to Double Lung Transplant
I was 33 years old with stage 4 lung cancer in both lungs. No targetable mutations.
Over six years I went through 5 different chemo regimens, about 2 years of immunotherapy, 3 clinical trials, and radiation. The fatigue and nausea never fully left, on and off for all of it. When I kept progressing and everything failed, my pulmonologist referred me to a lung transplant program. I relocated to Chicago. Two weeks in the hospital, months of physical therapy, and about 6–8 months before I actually felt like myself again.
Then the cancer came back in my spine. I went back on chemo and had radiation. Even so, I'd recommend a double lung transplant to anyone who qualifies. Treatments have come so far. Stay hopeful!
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Biomarker Testing Saved my Life
In November 2018, I was 46 years old and the healthiest I'd ever been. I was riding my bike 100 miles a week, going to exercise classes and eating keto. I had been at a new job for 5 months when a lymph node popped up on my neck in a weird spot - not the normal flu/infection lymph node spot. I waited about two weeks to see if it would go away - it did not, so I contacted my Primary Care Doctor.
She did blood work and ordered a CT scan on that lymph node. Blood work showed nothing amiss except slightly elevated calcium - nothing alarming. The CT however, caught a "spot" in my upper right lung. She then sent me for an Ultrasound guided core biopsy on the lymph node. I was told it was Squamous Non-Small Cell Lung Cancer. I then had a PET scan that showed I had Stage 4.
I started on immunotherapy and in 3 months, I had broken bones, lumps everywhere, was in a wheelchair, wearing diapers, sleeping 23 hours a day. As I was getting ready to ask to be put on hospice, my oncologist said "it's rare for Squamous to have a targetable mutation, but you have one. We're going to start your on this targeted oral medication."
Within 1 week, most of the lumps were gone and I was awake 15 hours a day. By week 2, I was out of the wheelchair and acting like nothing happened.
I'm now 7-1/2 years thriving with Stage 4 Squamous NSCLC. I am still taking my targeted therapy.
If you have Non-small cell of any sub-type (adenocarcinoma/squamous), get Next Generation Sequencing (biomarker testing) - it may extend your life!
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Don’t give up on your options.
Triple negative is the one people say is hardest. No hormone receptors, no HER2. Fewer targeted options. My stage 4 diagnosis came at 39 and I sat with my oncologist for a long time that first appointment, trying to understand what we could do. She explained that because my tumor was PD-L1 positive, I was eligible for Keytruda combined with chemo.
Seven months in, the immunotherapy has caused real side effects. I developed a skin rash and joint inflammation early, managed with a short steroid taper. The chemo knocked my blood counts badly enough to delay one cycle by two weeks. But my last CT showed significant reduction in all visible tumors. SIGNIFICANT.
TNBC feels like a harder road because in some ways it is. But there are more options now than there were 5 years ago. That matters enormously!
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To every mom fighting something hard today
This Mother's Day, I woke up at 6:48am because a 2 yo climbed directly onto my face. And I want to tell you I have never been happier in my entire life.
I was 34 when I got the call. Stage 4, HR+, mets to my liver and four spots on my bones. I had 2 kids at home. I remember sitting on the bathroom floor after hanging up the phone thinking: I am not leaving them. That was sixteen months ago.
Now, my tumor marker has come down from 312 to 74. My oncologist calls it a meaningful response. Yes, I've had neutropenia from the Ibrance which meant delays, extra blood draws, and one very anxious week waiting to restart. Yes, there are days when getting off the couch feels like a genuine achievement. Fatigue that sits in your bones, not just your muscles. The kind tired that a good night's sleep doesn't fix.
But here is what I also know: I take my pills every single morning. I make it to every single appointment. I drop my babies at school and I am there — not just physically, but actually, fully there.
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“It’s treatable”
Three years ago I sat in that cold little office and heard "stage IV, metastatic breast cancer." I remember driving home and not remembering anything about the drive. Nodes in my spine. My oncologist said the word "treatable" but all I heard was "terminal." Fast forward to last Tuesday's scan - CLEAN. No evidence of disease. I'm still shaking as I type this. It didn't happen overnight and it wasn't pretty - two different chemo regimens, a clinical trial, more blood draws than I can count. If you're at the beginning of this and terrified, I get it. Keep going.
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NED
Shaking. Crying in my car in the parking lot right now. My oncologist just said "no evidence of disease." Stage IV breast cancer diagnosed 2021. Mets to lymph nodes and liver. Clean scans three times in a row. This doesn't mean it's gone forever. But it means right now, today, I am winning. That's enough!!!
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Stage 4 HER2+ breast cancer survivor
I wasn't going to post this because I'm superstitious and felt like if I said it out loud the universe would take it back. But here it is: NED. Stage 4 HER2+ diagnosed 28 months ago with liver and bone mets. I've been on Herceptin and Perjeta since month one, added Taxol the first year. My last three scans have been clean and my oncologist used the words "exceptional responder" today. I'm not cured. I know that. But I'm sitting here alive and feeling pretty okay, and that is so much more than I thought I'd have.
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Dealing with Tamoxifen
Six months on Tamoxifen and I want to be honest with people who are just starting it. The hot flashes are real. Mine hit every 45 minutes like clockwork, including through the night. My joints ache so badly in the morning I walk like I'm 90 for the first hour. Weight went up 8 pounds despite eating exactly the same. Some days I'm in a fog by noon. I know it's working and I'm grateful. But I also needed someone to tell me these things were real and not in my head. They are real. You're not imagining it. Hang in there.