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Where did you find information?


KatieB

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Aside from LCSC and GRACE:

When you were first diagnosed, where did you find information on NSCLC?

What was the best resource you could find in terms of education about the disease?

Did anyone tell you about clinical trials and would you have been interested in learning about clinical trials?

What about treatment options? Aside from your doctor, how did you learn about the treatment options available for NSCLC?

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what with chemo brain, you expect me to remember almost 3 years ago?

No, really, my first months of flailing around I mostly relied on what my doctors recommended and the information they gave me on treatment and staging. I found LCSC and Grace some months later - or at least that was when I joined. I'm sure I was looking at less stellar sites on the internet, along with NCI and Mayo, etc. The clinic I went to had thick booklets from ACS; I skimmed them at least.

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I searched the internet and the information out there was horrible. I was convinced that I was one of the ones that was not going to make it. I read every horrible statistic out there - did not believe my doctors, I thought they were lying to me.

Then I found Lungevity - and I spent literally hundreds of hours reading the old old old posts and I found a new family - which led to hope. From there I found cancergrace and I did not need anything else. The family and friends I have found here support me and each other through thick and thin - and if you stumble on this place in your hours of "need" - you will be welcomed.

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I guess that I was lucky. I did find some useless sites, but I spent most of my internet time looking at info. from major cancer centers - Memorial Sloan Kettering, M.D. Anderson Cancer Center - both Houston and Orlando, Mayo, etc. I also found specific info. re: thoracic surgery, procedures, and pictures. For me that was very helpful, but might bother some people.

Muriel

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I got mine from all over, major cancer centers, medical journals reports on trial studies, magazine and newspaper articles and such. I especially dug into the surgery options and adjuvant chemo trials.

I think I was just shocked enough at the diagnosis and realizing that I was clueless on the subject of lung cancer to the point that I wanted lots of hard facts before anything else.

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I flailed around on the internet, horrified at most of what I found. I'm still not beyond the fear of that "3 to 5 years" even tho I see evidence of so much survival beyong that. My cancer was so oddball with a "thickening" in the chest wall and no tumor in the lung or anywhere else, the major sites didn't offer me much. I had to depend on my doctors, especially at MD Anderson. It was a couple of months before I happened on LCSC and Grace. They were my lifesavers.

Judy in KW

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Once my oncodoc put a name on it, I binged it and found more info than I could read. I read alot. I didn't find out about LCSC until April '11. It was the whole back cover of Cancer Fighters Thrive quarterly. American Cancer Society has a wealth of knowledge too. I have'nt looked at cancer grace yet but I will.

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Thanks for starting this thread Katie!

First my primary care doctor gave me the news and immediatly referred me to a Thorasic surgeon. He told me his conclusions. Next we decided to get another opinion. Everyone I knew that had lung cancer didn't have surgery. Ironically, I thought removing a lobe was very dramatic and going to extremes. Little did I know that removing it is good news!

The folks at Mayo clinic were amazing. I highly recommend them for anyone needing further information.

I did not go to the Internet. I was painfully aware of the potential to scare myself to death. I relied on human interaction.

Once Mayo Clinic confirmed the dx, I flew home and in 2 days was in the hospital having a lobe removed!

I didn't find Lungevity until long after my treatments, but am so glad I did.

Judy in MI

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  • 11 months later...

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