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New Here and need to learn fast

Lung Cancer | Last Active: Oct 31, 2023 | Replies (69)

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@sayitisntso

Hi Everyone,

The news couldn’t be worse. Confirmed Stage 4 lung cancer and has spread to at least several areas (hot spots)… long story short, PetScan report still not done so both drs read the pet scan with the disclaimer that the report will tell more. My middle lobe of my lung didn’t collapse, it’s actually a mass. That bump on my rib, is also confirmed, sternum too and random small hot spots on back and I think adrenal and either liver or kidney. No surgery, straight to Oncologist however Dr #1 is taking me into the hospital at 6:30 tomorrow morning to take off the lump on rib for biopsy. He was going to send me to a pathologist but he was concerned that a fine needle biopsy which is all the pathologist at the hospital would do wouldn’t get enough tissue for the genetic testing and was already scheduled for surgeries tomorrow so called me after I left his office and asked if I’d be willing to let him do it in the OR tomorrow. Their mutual concern I think is that this bump on rib grew so quickly over the last month so they want the type of cancer identified as soon as possible. It was a terrible day and my daughter just flew in, she will be here momentarily so I need to be quick… my other daughter is coming in the morning. I will have a brain MRI, I think Fri or Mon., first dr didn’t suggest it but 2nd dr said let’s get it done to ensure it hasn’t gone to brain.. he didn’t seem to think it has but it is protocol. Both drs said the same thing, looking at me they would not have expected this diagnosis or that it’s actually advanced.

Dr #2 told me to ensure Dr #1 orders Genome testing or NGS Next Gen Sequencing with the biopsy.

Guys I am all ears on anything else you recommend.

Has anyone been Stage 4 that spread and here to talk about it?

Both Drs spoke very highly of the miracles over the past few years of targeted immunotherapy and TKI so I pray my DNA or whatever it is will be a match for it.

They both spoke of Chemo and both said no radiation because it’s spread.

I’m sure I’ll think of more. I think I’m too in shock to even think and my kids are beyond devastated so I need to fight this with everything I have.

Again they don’t have the report yet which will tell more but were both confident in what they saw. I knew after Dr #1 I didn’t need appt with the second dr but went anyway and glad I did.

I asked what size the lung mass is… they need to wait for report.. Dr #1 estimated 4cm… Dr #2 estimated 2cm. Both said size doesn’t matter at this point, what matters is that it spread.

Please if there are questions I should be asking let me know.

I’ll read back through the previous responses later.

I think my adrenaline combined with both kids coming has me in a bit of denial. It’s just surreal.

I don’t look sick. I can breath, I’m not coughing. SMH

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Replies to "Hi Everyone, The news couldn’t be worse. Confirmed Stage 4 lung cancer and has spread to..."

@sayitisntso, I wish it would have been better news. What you are feeling is normal, numbness for now. Expect to be overwhelmed with information and a language that you don't understand. You'll learn, and we can try to help you. I'm glad that your daughters are there/coming to support you, and each other.
Your doctors are taking the expected next steps in ordering the brain MRI and the biopsy. Today, there are many types of treatments for lung cancer. The biopsy will provide vital information in directing the treatment plan. My oncologist waited for the NGS/bio-marker tests to come back before doing any treatment. I was getting sicker and sicker but looking back I'm glad we waited. With your accelerated spread, I'm surprised that you aren't experiencing symptoms too. I hope that continues for you.
There are many stage IV patients living longer active lives. Until we know more about the specific type of cancer, it's difficult to predict what you'll face. That biopsy is critical. There are many different types of lung cancer, and just as many or more treatment options.
I was diagnosed stage IV 3 1/2 years ago, and just hiked Rocky Mountain National Park last month. I have no plans to slow down anytime soon.
Spend time with your daughters, don't worry about responding to Connect right away. How are you feeling after the biopsy? Does one of your daughters live nearby?

I am so sorry at this horrible news. I'm glad your family is going to be around you for a little bit, and you just have to keep thinking positive no matter what at this point. You asked about people with stage 4 surviving, and yes they do. I have a friend that I met on here and she was in a group for a little while with three other women that were all stage 4 and two of them had been stage 4 for about 5 years; it all depends on how your body will react to everything they're going to do at this point. Many times people respond extremely well to immunotherapy, and other things. This is all going to be dependent on how your body responds. I'm hoping that you can find some peace and just laugh when you can and cry when you feel like it - every emotion you have going forward is going to be normal and don't feel bad about having those terrible moments, embrace them, but also laugh as much as possible!!! You are like a ship on the ocean in the eye of the storm right now so be prepared to change your sails as the wind changes direction. I pray you find calmer water, and brighter skies soon! Please keep us updated.💗