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NSCLC


MarieA

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In short, Diagnosed with nsclc in 2012, found accidentally testing for something else.  Numerous multi-focal ground glass, with some some solid components.  Very slow growing.  No EGFR mutation, so won’t respond to chemo.  Had a left upper lobectomy, which leaves little room for more surgery.  No cure, will determine treatment options as problems arise.  It’s a wait it out and see. Even though it’s been 6 years since my diagnosis, I’m still in early stages, which, as we all know, can change at any time.  Hard part...the wait and see, where and when.  Six years of waiting and watching and wondering will this CT “be the one”?  I should be used to it, but I know I’ll still be as devastated as I was when first diagnosed.    

I’ve been experiencing some pain in my right leg and hip, fairly new but not going away.  Could be normal ageing, (I’m a young 73), but of course my mind goes to bone mets.  Has anyone had or have a similar experience?  Can you go from early stage to Mets in 6 to 7 years?   Anyone with ground glass opacities?  I realize, that no matter how slow growing my cancer is, the prognosis is not good.

It would help to hear from you.

 

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Marie,

Ten years ago I would have agreed with your can’t treat conclusion. Now we have immunotherapy and the world’s changed.  Do consult with your doctor on bone pain but I think it far more likely for a met to appear in an organ before bone. No science behind the aforementioned just years of paying attention to lung cancer. 

Your EGFR statement is correct only as concerns treatment by targeted therapy. There is a full battery of chemo available plus again immunotherapy. Moreover, new precision radiation techniques also are now available to zap a recurring met. So consult with your doctor about your bone pain and otherwise enjoy life. 

Part of life after lung cancer is management of uncertainty. I’m no better at it than you. Consequently I’ve giving up trying to predict my future. My past is irrelevant, my future will always be uncertain, my only influence rests with how I feel about and what I do with today. 

Welcome here. Get to know us. We’re a pragmatic group of folks. 

Stay the course. 

Tom

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Hi Marie,

So, you are a six year survivor of lung cancer, congratulations!!!  But 6 years of the "wait and see" game is taxing, I'm sure.  I'm thankful you are here and have found us!

I came to the LUNGevity forums for support when my mom was diagnosed with a recurrence of lung cancer.  The folks here helped me get through a dark time and made me realize that I need to empower myself with knowledge to be the best advocate for my mom.  So, we are here for you!  Luckily, my mom has not had any bone met diagnoses yet (knock on wood), so I'm of no help with your question.  I mainly wanted to welcome you and congratulate you on 6 years of LIVING with cancer.  

Take Care,

Steff

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Tom, thank you for your encouragement.  I’ve done really well managing my lung cancer until now, with new unknown pain. If I only knew what was causing it.  Lost my father and two brothers to lung cancer.  My fathers lc went to the bone.  Both of my brothers lc went to the brain.  A good majority of my nodules are in the right upper lobe.  After my last scan they wanted to do either surgery or SBRT on a 7mm solid nodule. To get ahead of it.  Then decided not to do either at this time.  Not a lot of lung tissue, said they need to pick and choose.  I didn’t have pain at that time.  I was told that eventually, in the late stages, I would be given chemo pills. 

Thanks again.  It helps alot to talk to others who have lung cancer.  All the best to you.

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9 minutes ago, Steff said:

Hi Marie,

So, you are a six year survivor of lung cancer, congratulations!!!  But 6 years of the "wait and see" game is taxing, I'm sure.  I'm thankful you are here and have found us!

I came to the LUNGevity forums for support when my mom was diagnosed with a recurrence of lung cancer.  The folks here helped me get through a dark time and made me realize that I need to empower myself with knowledge to be the best advocate for my mom.  So, we are here for you!  Luckily, my mom has not had any bone met diagnoses yet (knock on wood), so I'm of no help with your question.  I mainly wanted to welcome you and congratulate you on 6 years of LIVING with cancer.  

Take Care,

Steff

Thank you Steff.  Knowledge is key.  We all have years of studying lung cancer and have a lot of knowledge between us.  I’m thankful we’re all here to help each other.

Marie

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Hi, Marie!  I don't have any great suggestions, but Tom's given you some very good ones.  There are so many potential causes for pain, especially (as you noted) as we get older.  Have you seen your primary physician about the leg/hip pain?  If it's due to some treatable cause, you owe it to yourself to get it treated.  You could have a very long life ahead of you still, and you certainly don't want your life to be limited by unnecessary pain.

Welcome, glad you found us.

 

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Hi Marie,

I had a right lower lobectomy almost 2 years ago, diagnosed with stage 1a. Last year I had a fairly rapid onset of right side hip, back, leg pain. Saw my primary who sent me for Xray, then to physical therapy. Diagnosis --probably muscular pain in addition to arthritis in spine (with a bunch of fancy names!) and degenerative disc disease. So I'm doing exercises, which has helped some. I'm also 73. Getting old has its issues, with or without cancer. I prefer without, which seems to be my status right now.

Bridget O

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