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yankeegirl08753

Newbie!! Goes easy on me!!

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Not sure what to say except my name is D and I'm 46 yrs old. I was diagnosed in January 2015 with stage III squamous cell carcinoma of the right lung. Inoperable. I was previous miss diagnosed for almost a year with pneumonia and bronchitis. Turns out I didn't have either. I went thru 10 rounds of chemo and 44 radiation treatments and then went directly into a clinical trial for one year of infusions and now I have one year of scans, blood tests and observation. I've yet to hear the words remission or NED which has really bummed me out. In 2005/2006 I underwent 3 brain surgeries to remove a primary tumor and that was soooo EASY. 10 hours of surgery and I was DONE! This is a whole different animal. I'm so worried about metastasis that I'm not LIVING. I'm afraid every day and I have no idea how to deal with this. I see a therapist every week, but the other 6 days I'm an anxious mess. I don't sit around having pity parties....im fighting this thing and staying positive...but my mind continues to creep back to the fear of it spreading. My tumor was the size of a lemon when they finally found it....it's less than half that size now...but because of my brain tumor history I'm just so scared of it going to my brain. I just want some peace. I'm seeing a pulmonary dr at the end of the month because I'm having some COPD symptoms....one more thing to scare me. Will I need 24/7 oxygen? More medications? So many questions....I'm glad to be here and look forward to chatting and getting some support from all of you. Thank you and have a blessed night. Xoxoxo

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Hi D and welcome.  I was stage 3B diagnosed Dec. 3 , 1997.  I had a tumor in the apex of my upper R lung. 

It was pressing on nerves going down my arm and pressing on the lining of my lung.  No positive lymph nodes,

no metastasis. 

I started with lots of chemo and daily radiation. Next they did take my lobe of lung .  After I had more chemo.

I am still here.  When they took out my lung I asked the Doctor about the tumor and he said it was all dead.  I did

have chemo after because that was the plan from the first.  If you go to my story you can find my journey in more detail.

 

It is possible to survive .  I pray you also respond well to the chemo.  It is tough but I did survive.

 

Keep us posted. 

 

Donna G

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I certainly understand your concern and your questions.  I would suggest writing down "all" of your questions before seeing your doctor.  You're dealing with a lot right now and you need some answers.  Please keep us updated ((hugs))

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Hi D,

 

Welcome to the LCSC message boards.  We hope that you will make many meaningful connections with others affected by lung cancer in this community.

 

Here is a link to the LUNGevity Survivor Resource Center https://www.lungevity.org/support-survivorship/survivor-resource-center. The Survivor Resource Center offers information about the disease, treatment options and other resources that can help make coping and living with lung cancer easier.

 

Please let me know if you would like more information on any of LUNGevity's support services. We are here for you!

 

Lauren

--

LUNGevity Foundation

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Welcome D,

 

I completely understand your fear.  I am still afraid of lung cancer and I've been NED for 9 years and survived a total of 12 years since diagnosis.  Never had a brain tumor but my lung cancer diagnosis was the same as yours - even in the same lung.

 

Fear, how does one combat the fear?  First, realize I was not very successful.  During treatment, I was completely unhinged.  Diagnosed in 2004, I fought the disease alone till early 2007 when I discovered an on-line cancer support website.  That encounter led to advice to consult with my physician about depression.  I'd never had depression but people on the website suggested I'd be mighty unusual if I was the one lung cancer patient who didn't.  My doctor arranged counseling and medication and further suggested I attend a cancer support group at a local hospital.  I did all of these things and continued to participate in my on-line cancer website.  Reading about the journey of other lung cancer patients under treatment was a tonic.  Moreover, it gave me clues about what to expect about future treatments.  Still I was afraid.  I am still afraid for my oncologist tells me, even today, there is a significant probability that my lung cancer can return, even after all of these years.  That is why I still have scans and consultations 2 times a year.

 

I was also concerned about COPD.  My wife purchased a Pulse Oximeter from our local pharmacy.  Now when I express concern, she puts it on my finger and it has always registered about 97% oxygen saturation.  If it stays that way, I won't need oxygen.  Ask your pulmonary MD about the advisability of purchasing a Pulse Oximeter.  One of my disease side-effects is my airway is very sensitive and I've developed a low tolerance to pollen.  So the spring and fall in Texas are bad breathing seasons for me.  I use a prescribed inhaler and that helps but staying indoors when it is windy outside is what helps the most during the high pollen months.

 

Stay the course.

 

Tom 

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