Is this a forum for discussion of cancer in general, or small cell lung cancer. My sister had non-small cell cancer and died four years ago. I'm hoping to connect with people who have dealt with this personally or with a family member. She barely had symptoms before she was diagnosed with stage IV; then died 13 months later after enduring chemo and radiation. She and the rest of our family were so stunned by all of this. Is this the forum where I should be or is there somewhere else? Thanks.

Hi @sistergoldenhair, welcome to Connect. You have posted to the right place to talk with other people who have lung cancer. It is difficult to lose someone and so quickly. You may also be interested in taking part in this discussion:
- Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/

It sounds like you and your sister were close.

Thanks, Colleen,

Yes, we were close. I continue to want to pick up the telephone to call her.

This started with what my sister thought was a winter cough, sometime in December, She was a healthcare professional and in close quarters at work. She saw her physician who sent her home with the usual instructions for a cold with cough. A month later she was back with severe chest pain. A chest x-ray revealed two broken ribs, and a mass in one lung. A bone scan was done to determine what caused the broken ribs, but was inconclusive.

It was January. She went through the tests and scans, and was told she had
non-small cell adenocarcinoma in one lung at stage IV with metastasis to the brain. She was stunned and so was everyone else. She was a non-smoker who pursued a healthy lifestyle. She was exposed to second-hand smoke in childhood.

She was told this cancer wasn't curable, but was treatable. She inquired about surgery, and was told it wasn't an option in her case. In February, she started chemotherapy, Tarciva?, I think, for the lung cancer, and radiation to the brain. Our family and her wide circle of wonderful friends and neighbors circled the wagons and did everything we could think of to support her. A few months later, the metastasis returned to the brain, and was more widespread. Her entire brain was irradiated while she continued the chemo.

In November, around Thanksgiving, her doctors told her, and she told us that she was cancer-free. Wonderful news. By Christmas, the cancer had returned and had spread to other organs. Her doctors frankly told her they had done all they could for her. Her life expectancy was estimated at about three months. She died two months later. She'd had a bad time during hospice, and her death was a blessing to her and to us when it came.

There's more to this; I'll hold off on that for right now. I'm interested in hearing from anyone who knows about this type of cancer, has experienced it themselves, or had a loved one with it. Thanks - Susan

Bless you. It take courage to share your story. Lung cancer is deviststing. I know because this month I am so very blessed to be a 9 year non small cell lung cancer survivor. I NEVER smoked.
I truly believe the STRESS FREE LIVING
Research Study by Dr Amit Sood, helped me find acceptance & resilience to Fight
Cancer. This is now a book, I hope you read it? Then please read HAPPINESS by Dr Amit Sood. These teachings may help you feel less alone.

My favorite part of the research study and reading these books was, when I was told how to take time (5 mins) every morning to reach out to 5 people, even if they have gone before me, and let them know I love them. This lead me to looking up to the heavens when I am outside, walking, skiing or running for 30 mins. It can be a cloudy cold day ...but the sun always shines through.

Keep sharing because many lives will experience the healing effects as you
reach out. You deserve a cyber hug!

Aren't we fortunate to have mentors at Mayo connect, I often ask, where do they get their non stop compassion ? Today, I looked up and said, Thank you for these caring mentors at Connect! Thank
You!

Thanks for your response. So you survived nine years after a diagnosis of non-small cell lung cancer. Was your cancer diagnosed at an earlier stage? Did you actually participate in a research study? I/we are still stumped by the lack of definitive symptoms up to shortly before her stage IV diagnosis. I'm certain she would have jumped at the opportunity to participate in a research study, but none were being offered at the time - and we live near two respected medical schools!

I previously mentioned there was more to the story. About four years before her cancer diagnosis, I took my sister to the ER; she was complaining of headache and severe nausea. The doctors wanted to send her home, but I talked them into admitting her. On the third day of hospitalization, her oxygen saturation levels were low, and she was put on oxygen. Seemed like no big deal at the time. A nurse gave me her cell phone number so I could call during the night or next morning. I called next morning; overnight, she had been moved to ICU because she had stopped breathing. In all the confusion, no one in the family had yet been notified.

Things got worse. We saw her chest x-rays; her lungs looked like they were full of cotton candy. She was diagnosed with A.R.D.S. - Acute Respiratory Distress Syndrome. She was on a ventilator and induced sedation for ten days with no improvement. Her kidney enzymes weren't good, causing us to fear her organs were shutting down. A biopsy was planned for the next day.

On the eleventh day, she started breathing on her own (therefore no biopsy). She was told she also had something called critical encephalopathy. She continued to improve, and was sent to a rehab facility to relearn some motor skills, apparently due to neurological damage. She wasn't the same after that. To see or talk with her, you wouldn't have noticed anything. Only those close to her knew; she had poor motor skills, was having difficulty performing her job when she returned to work, dropped things all the time...

My question and comment for anyone out there - is it possible the A.R.D.S. left her susceptible to developing this cancer? Perhaps some scar tissue from the A.R.D.S., the cause of which was never determined. Or maybe the A.R.D.S. affected her immune system. There are so many questions, and we received few answers from the doctors who treated her. They seemed not to want to commit themselves to a cause. And why so few symptoms before diagnosis at stage IV already? She wasn't one to ignore symptoms.

I know any answer won't bring her back; I just wish we knew more. No one was in denial; we threw a huge birthday party for her about a month into her treatment, knowing it could be her last, but not giving up hope. Sorrowfully, she died a month before her next birthday.
My only consolation is my Faith, through which I have the knowledge I'll see her again. Thanks for reading - Susan

<br><br><br><br><br>Hello. I am so sorry that you lost your sister. I lost my dad to the same <br>illness. Lung cancer is very insidious, it sneaks up on people with no symptoms <br>until it reaches stage 3 or 4. It is rare to survive those later <br>stages. So, of course it comes to a huge shock to everyone that knows them. <br>I have a good friend who's husband just got diagnosed with stage 3. He is 58 yrs <br>old and the light of her life. Their pain is very palpable to all that know <br>them.<br> <br><br>

Dearest Susan:
Your journey with your sister is heartfelt. I am truly sorry for your loss and pain. And I want to commend you for your kindness, compassion and resiliency.

I very well understand your questions. This is why my husband and I founded a non-profit foundation. It is our hope that through Running Lungs Walk/Runs & climbs we can create a place where people exactly like you can share their feelings about the effects of lung cancer and understsnd the importance of early and proper lung diagnosis so they can patients can receive proper treatment.

We hope too launch a Longitudinal Healthy Lungs Research project to create lung awareness and save Lungs and lives, raise research funds for Mayo Clinic lung health, lung cancer and pulmonary research. Because all of your questions deserve answers.

And you are so right on...you will see your sister again. For now, keep taking those walks and look up...and see the sunlight of her golden hair shine on you;-) I have a feeling she wants to see you smile back!

God Bless You & thank you for sharing another very special part of your journey. Your writing helps others, more than you can imagine!

Kindest regards and big hug
Lw

Susan (@sistergoldenhair), I'm very sorry for the loss of your sister. And am especially sorry that the ICU experience was so traumatic. If you wish to join us, we have a group sharing about ICU experiences on Connect. It may be helpful to share your story with others. Please see the discussion here:

* Post-Intensive Care Syndrome (PICS) - Let's talk http://mayocl.in/2j73pv7

Lw, thank you for your very kind response. It means more than you know. - Susan

Thank you, windwalker (I like that moniker); Insidious is so right One month, everything's fine; next month, a life-threatening diagnosis. I wish your friend and her husband well. The support of family and friends is so important; it was a blessing that we had it. I wish the same for you, your friend, and especially her husband. - Susan