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Kim Y

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Thanks for hanging in with us when you're having these password problems. I really souns frustrating, worse than inconvenient! Let us know your biopsy results and hang in there!

Bridget O

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On 5/16/2018 at 10:00 AM, Laurel said:

I have to reset my password each time also. I sent in an email for help. No response yet. 

Hi, Laurel,

I'm sorry to hear that you're experiencing difficulty logging in as well. I will send you a private message and we can work together to resolve the issue. Our tech support suspects that the problem might be the Autofill settings in your web browser. Here are some steps to turn off Autofill:

  1. Click the Settings menu and choose “Internet options”.
  2. Click the Content tab.
  3. In the AutoComplete section, click Settings.
  4. Turn off “Forms and Searches” and “User names and passwords on forms”, then click OK.

The steps might vary slightly, depending on which web browser you're using. You may also want to clear your cache and cookies.

I will be happy to walk you through these steps via a private message or we can set up time for a call.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation 

 

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Hi everyone - I’m still waiting on my results - they said 72 hours but it’s been one week. I’m preoccupied by what’s going on but not overly anxious - my feeling is I’d rather them take the time they need to do a thorough, accurate analysis. Given the biopsy results are so key to charting the course ahead.

But my friends and family are hounding me to call and find out what’s going on. Also given the holiday weekend is upon us.

I know they are worried for me - I’m worried for me - but they are getting on my nerves and are making me more anxious than I frankly need to be.

One friend was implying my family doctor isn’t doing enough - he should be calling the lab and getting a status (?). I was like - uh - he’s on the receiving end. That pissed me off. 

I just feel like when they know - they will know. There’s no part of me that wants to call and hound them - I’m not sure  what good that would do.

My friends/family mean well but they are making it worse for me right now. My family doctor yesterday said it can take longer sometimes. That’s good enough for me - my gut says not to call again. I read online it can take 7 to 10 days for complicated cases - maybe that’s my deal. 

Kim

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Kim,

Family and friends are well intended but, in my diagnostic phase, not well informed.  I spent hours chasing down one miracle cure after another from the very concerned and well meaning who were most concerned about my diagnosis.  My mother was especially challenging and was broadcasting everything she heard from her family and friends.  After about 3 weeks of mayhem, I finally had to tell everyone I'd had enough medical advice.  That didn't stop everyone; my mother was especially persistent. 

About midway into my third line treatment, I discovered an on-line cancer website and gave those close to me the link so they could read about my treatment experience.  More important, they could read about other cancer survivors treatment experience and that combination of information and insight turned down the volume on the miracle cure or "tell your doc to try this" advice.  You can use this site as a source of information if you think that would help.  Alternatively, you could refer folks to Lung Cancer 101 at the LUNGevity website so they could read into our disease and perhaps understand what you are experiencing.

Diagnostic delay is hard to tolerate.  I endured about 3 weeks of coughing up blood that made going out in public embarrassing.  But in those 3 weeks, diagnostics determined my type and stage and set the course for my treatment.  Once a treatment plan was established, things moved quickly but there were still delays.  While in first line pre-surgical treatment, the radiation machine experienced a technical fault that took about 3 days to correct, and I worried that each day of missed radiation would allow my tumor to spread like wildfire.  They just added 3 additional treatment days to the end of my scheduled plan, and the radiation oncologist said treatment plans were designed to accommodate interruptions.  

Lung cancer to the newly diagnosed is a very difficult concept to understand.  It is a serious, life threatening disease and for most, it is the first such encounter.  There is a new vocabulary to master with baffling drug names and strange acronyms. And, there is unsettling uncertainty to deal with.  The only comfort I can offer is most here have been down your path and are still hanging around the forum.    

Your doctor is giving good counsel.  Lung cancer affects individuals and each of us is different.  That difference means the best possible schedule expectation is always a rough order of magnitude estimate.  A projection of 3 weeks of diagnostics could easily turn into 6 weeks, especially with the new biomarker biopsy testing.  But this testing is essential because targeted therapies and immunotherapy are very effective treatment methods. So....

Stay the course.

Tom

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Thank you for the time it took to write such a thoughtful response Tom. I appreciate all of the advice and resources. 

I got the call this morning and I am relieved to report - the nodule is NOT malignant. It's been diagnosed as necrotizing granulomatous inflammation.

The interventional radiologist who did my biopsy - said there was a 20 percent chance it wasn't malignant - I guess I'm part of the 20 percent. :-)

Thank you to all of you for your support during the last month - it was trying - to say the least.

Kim

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So HAPPY for you!!  I sometimes wonder about reminding new people that things might not be as grim as they think--and that, in some cases, it might even turn out to be completely benign.  But cases like yours remind me that it's not just throwing around false hope.  

And for us (former) smokers, getting a good scare is sometimes what we need.  I quit smoking a year before my diagnosis--as soon as they spotted my nodules I decided this was a bit too real for my taste.  And by quitting when I did, I have no doubt that I was in much better shape for the surgery I needed after the one nodule grew.  :)

You made my day!

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Oh, and just a reminder--talk to your doc about participating in lung cancer screenings.  We remain at risk even after quitting smoking, and I'm convinced that the screening (which detected the nodule to begin with and showed it had grown and was suspicious for cancer) saved my life.  Most people don't get symptoms of lung cancer till it's well advanced.  

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I do need to go see a pulmonologist LexiceCat, so I'm glad you reminded me of this. Until the last month, I didn't know there even were lung cancer screenings. 

I've always been very good about my annual appointments - getting mammograms, etc. If I had known lung cancer screenings were out there, I would have done this too. 

I appreciate your mentioning that to me.

Kim

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