A lung cancer diagnosis can be overwhelming. It may feel like your world has flipped upside down. It may feel like there is so much to do, you don’t know where to start. It may feel like you have no one to turn to for advice. It may feel like you need to start treatment as soon as possible if you are going to beat this thing.
Before you do, learn from lung cancer survivors who have been in your shoes and benefit from their experiences. Check out the words of wisdom from survivors from our community who have come together to provide their best advice for a newly diagnosed patient.
Get a second opinion.
“I wish I would have gotten a second opinion prior to my lobectomy. I found out afterwards that I didn’t necessarily have to have the surgery because of the type of mutation I have, EGFR L858R; the pill that I currently take (Tagrisso) would have shrank the tumors.”
-Dee
Go to a lung cancer specialist.
“I wish I’d known then that it is critical to be seen by an oncologist who specializes in lung cancer. Instead, I just went with the flow and ended up with a generalist oncologist who didn’t bother with [biomarker] testing, gave very little info, and gave zero support or encouragement.”
-Marilyn
Get biomarker tested.
“I wish I would have pushed for [biomarker] testing. I asked my first oncologist almost every visit, but he did not test my tissue for nine months. I was a nag! I wish I would have gotten a second opinion immediately (I was afraid to offend oncologist) instead of 5 months after diagnosis.”
-Dawn
Educate yourself.
“I wish I had known more about lung cancer. I am lucky to be EGFR T790. I thought when they had me ring the bell after my lobectomy that I was home free, but it metastasized. I can’t complain as my oral pill has me stable. I just wish I was more knowledgeable.”
-Debbie
Bring someone to your appointments with you.
“Take someone to your appointments to take notes as it’s all very overwhelming.”
-Angie
Join a local support group.
“Immediately find a local support group for both yourself and your partner/family member. Without this, relationships can sink, and they can sink quickly.”
-Elizabeth
Know it’s not a death sentence.
“I wish I knew it was not a death sentence. I never dreamed I’d be around almost three years later doing what I want to do. Also, I wish I knew there are tons of options when treatment stops working. It’s a process, that’s for sure.”
-Kathy
Have more questions or need more advice? LUNGevity offers many programs for those looking for support! You can join LUNGevity’s LifeLine, a peer-to-peer buddy matching system, where you will get paired with an experienced mentor who has been through what you are going through. You can also call the Lung Cancer HELPLine to talk to a social worker, who can help you manage emotional, financial, and support challenges. LUNGevity also offers in-person educational and support opportunities; find a Lunch & Learn near you or join us at the International Lung Cancer Survivorship Conference every spring!
For more resources and information, check out the Survivor Resource Center.