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Hi - I just got diagnosed two weeks ago with adenocarcinoma. I had been diagnosed with pneumonia for a couple of months until a follow up x-ray showed spreading in the lungs and a CT scan was ordered and a pulmonologist did a bronchoscopy. I had to insist on doing biopsies. I wanted to find out why my cough wasn't getting better and my chest hurt when breathing. So here we are, two weeks in. I've had a clear CT brain scan, waiting for PET scan results and molecular studies/pathology. I have seen the oncologist exactly one time not even a week ago. He told me that surgery isn't an option. It is spread out and affected tissue doesn't appear to be tumors. Surgery wouldn't leave me with enough lung to survive. I am told we will be able to do targeted drug therapy. This isn't what I was hoping for  because I was hoping it was something that could be removed. I am scared out of my mind, but lots of people keep saying that drug therapies have made amazing strides. I have seen a few other similar posts, and hoping to connect regarding drug therapy and it's effectiveness.

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Hi Kelly and welcome,

I'm sorry to hear about your diagnosis and I'm glad you found us.  This is a good place to get information and support. Lung Cancer 101 on the main Lungevity site is a good place to start looking for information. If you havent't been there already, the site is https://www.lungevity.org/for-patients-caregivers/lung-cancer-101

When you get your results of molecular studies and then what drug(s) are being proposed, if you post here, you'll undoubtedly hear from people who have similar diagnoses and who have taken the drug.  Let us know what other questions you have and how we can support you.

Bridget O

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Hi Kelly,

Your fear and disappointment in treatment options is a common theme here, unfortunately.  But you will find another theme here as well - survivorship and hope.  The fact that you have options for treatment means you can fight this and you can win at life, even if it isn't the treatment you were looking for.  Believe me, I completely understand.  When my mom was diagnosed with her NSCLC recurrence in June, we were hoping to be told the mass could be surgically removed just like her first bout of NSCLC.  But that wasn't the case due to the area the mass is in - cue the devastating disappointment.  Then we were told that traditional chemo and radiation weren't the best option - cue even more disappointment and a second opinion.  When we were given the best treatment option, immunotherapy, I remember thinking that this was it, I was going to lose my mom in the near future.  I also remember my aunt telling me that day to not give up hope, that the fact she has an option for treatment is a reason for hope.  The fact that there are so many more treatment options available now than compared to 2 years ago when my mom was first diagnosed is truly amazing and hopeful for every lung cancer warrior out there.  I am sure you will be introduced to other warriors here soon.  Even though many have traveled down a tough road, they are here and they are living their lives. And they are helping all of us have hope. I wish you the best and please remember that we are here for you.

Take care,

Steff

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Kelly,

Welcome here.  I echo comments of Bridget and Steff.  Bridget counsels to read-in to our disease and I support that suggestion.  Knowledge is power and with new and effective therapies emerging almost daily, your terribly preceptive question during a consultation may turn the tide.

Steff's message is also telling.  It speaks to two characteristics, personal attitudes, that are essential to survive this disease: persistence and hope.  Unfortunately for most, lung cancer treatment is not like medicine you are accustomed to -- take a week's worth of meds and done.  You need to prepare for the long game because treatment time will be lengthy.  And "hope is a good thing."  There is a significant difference between being an optimist and having hope.  One can be optimistic about outcomes but hope is more than optimism; it is a believe that spurs action.  Recall the plot line of the movie Shawshank Redemption.  The character Andy is convicted of two murders he did not commit and imprisoned for life.  His fellow inmates discourage Andy's hope for release, but Andy's hope drives the idea of a novel escape plan.  And, Andy executes that plan. While fellow inmates preached hope as "a dangerous thing", Andy learned that hope is "maybe the best of things."

I don't know of a single lung cancer survivor that wasn't "scared out of [his or her] mind."  It is a frightening diagnosis and a disturbing reminder of our mortality.  But, note how many of us on this forum are long tenured survivors.  If we can live, so can you.

You'll have questions as you negotiate the diagnostic and treatment trail and this is a good place for answers.

Stay the course.

Tom

 

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