Hi, newly diagnosed- stage 4

[elizabethjill2]

Hi, I was diagnosed 2 weeks ago with stage 4 nsclc adenocarcenoma and I’m having a really hard time coping. I’m not a smoker (although I did smoke a little in high school and college - I’m 62 now). I’ve had a persistent cough for 5+ years that I repeatedly sought treatment for and I was told it was likely reflux, asthma or post nasal drip. I had all the required tests to rule out those things (including chest xray) but nobody ordered a ct scan until recently, when I suddenly lost my voice from vocal cord paralysis. I didn’t know that an Xray is not good enough to detect lung cancer and that a ct is often needed. I have not been able to speak since the end of July. I am so angry that it was not caught earlier, especially since I have always been diligent about seeking healthcare. I am a worrier but this possibility never occurred to me and I trusted that the doctors were doing all the right things.

I am now going to MSK and I just started Tagrisso today (I am EGFR+, which I’m told is good) but I am so scared of what is going to happen to me. Thanks for reading.

[edivebuddy]

Sorry you're going through this.   It would have been way out of the normal to think of lung cancer without a significant Risk factor.   Even with screening becoming more commonly the majority of lung cancers are found incidentally.  A significant portion with a standard chest xray.   Mine was originally found incidentally on an x ray.  2 years prior it was not on a ct.  There's no way of knowing if your symptoms were lung cancer all along or they led to its development. 

It's normal to be scared.   So much is just  unknown.  But lung cancer treatments have come a long way.  Tagrisso is truly a miracle.   What was once a death sentence can now be treated nearly like a chronic disease for quite a long time even over 10 years for some.   I've been hanging around over 4 years stage 4b.  Not only Tagrisso but keytruda.   And new treatments are always just over the horizon.   The MARIPOSA 2 trial looks really promising  

 

MSK is one of the top cancer centers in the country.  They have the full compliment of services including counseling. You can tslk ti a patient  navigator to help you with every strp.if your treatment.   Patient Representative Department 212-639-7202

[tgif i guess]

like you, my stage 4 diagnosis came from losing my voice - i asked to see an ent when i lost my voice.  he asked why i had not had a pet scan that was recommended by the radiologist.  i assumed no scan was ordered because i had no diagnosis at the time.  

the ent shoved a wire up my nose and said my left vocal cord was paralyzed.  he ordered the pet scan.

evidently the left vocal cord nerve has a path near your heart and the lymph nodes with cancer had pinched the nerve.  

its annoying but all the 'what ifs' won't change anything.

on the upside, i was put on 2 chemo drugs and keytruda.  after a few months, my pet scans came back clear.  my ent said about 90% of the time, my vocal cord paralysis would be permanent.  i hit the lucky 10% and regained my voice.

that was about 2 years ago and my scans are (so far) still clean.  the side effects of treatment have been minimal for me.  hopefully for you too.

don't be surprised if they order a pet scan.  i have them periodically.  with the cea blood tests, its my way of knowing where i stand in the battle.

i know you are scared.  i was too.  but the diagnosis may not end with all the fears in your head coming true.

 

[LouT]

Elizabethjill,

I"m sorry to hear about your diagnosis but glad that you found our forums.  There are a lot of survivors here with a vast and varied set of experiences.  Of course it can be frustrating to have some symptom and then later you are diagnosed with cancer, but as Edivebuddy said; most LC cases are discovered as a result of an incidental scan or x-ray.  In my case it was a CT Scan for kidney stones that an alert pulmonologist noticed and put me on my way to diagnosis, treatment, and now survivor status.

My advice to you is to read some of the forums as there is much to learn about living with this disease.  Also please continue to provide updates on your progress and ask any questions you may have.

In the meantime there are two things I recommend you look at:

1. There is a blog titled "10 Steps to Surviving Lung Cancer; From a Survivor".  It was written by one of our long time survivors who, 21 years ago, was diagnosed at Stage 3 then Stage 4 lung cancer, and after a series of treatments was deemed cured a year or two ago.
2. We have a forum dedicated those with mutations of EGFR.  You can find it here.  It might be a good place to learn more about your mutation, treatment, outcomes, as well as tips on navigating the LC journey you may find helpful.

Lou

[elizabethjill2]

Thank you all for your replies. I’m not sure how I can reply to you individually. LouT, can you provide the link to the EGFR group again? I’m not sure it’s linking to the right place. Thanks.

[LouT]

My error EGFR Forum can be found here. 
 

Lou