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Just diagnosed, Havel brain mets, very scared


Judyg

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Hello everyone, I’m Judy G and I’ve just been diagnosed with adenocarcnoma and a scan showed multiple brain mets, so I imagine that’s stage IV  Meeting with oncologist next week. Just looking to hear from anyone with this diagnosis, maybe some encouraging words and what your treatment was/is like. Many thanks. 

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Judyg,

Welcome to our forums Judy.  I'm glad you found us, but sorry you need to be here.  Everyone here understands how devastating it is to receive a diagnosis of lung cancer, but please hear me out on a couple of things:

  1. Cancer (even lung cancer) is no longer the automatic death sentence it once was.  Study your disease but stay away from "Do Google" prognosis stats as they are the result of 5-year averages that don't take into account the many advances in surgical, chemical and radiation based therapies now available.  We have survivors here who were diagnosed with advanced lung cancer (Stage 3) 18 years ago and they are still here.
  2. You're likely feeling overwhelmed right now, but I want to share something written by one of our prominent members.  It's a piece called "10 Steps to Surviving Lung Cancer, by a Survivor" and it can be found here
  3. To better understand staging you should take a look at the information provided on this page.

You'll be hearing from more of my LUNGevity family soon and surely from folks in a situation similar to you.  For my part, my LC (lung cancer) was diagnosed early (Stage 1a) by an incidental CT Scan.  My treatment was surgical and i've been NED (No Evidence of Disease) since May of 2019.

Try to stay brave, you're not alone and there is hope.  You'll hear moving stories from our members and you can also look at the forum "Share You Lung Cancer Story" at this location.

Stay strong Judy, we're here to help.

Lou

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Dear Lou, very comforting to hear from you. I’m sure I will be relying on the support and knowledge of this resourceful and caring community. I’m kicking myself for not recognizing signs at an earlier stage like yours, but I’m trying to take comfort in the many treatment advances you cite. I’m grateful for this community. 

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Hi from another Judy. Lou is absolutely right, and when I was diagnosed at Stage IIIB in October 2019, my primary care doctor told me that lung cancer isn't a death sentence anymore. 

My pulmonologist did a bronchoscopy to get tissue for biopsy and biomarker testing. I was found to have a genetic mutation (EGFR Exon 19 deletion) that was causing my lung cancer. I had chemo and radiation first and have been on a targeted therapy (a daily pill) since March 2020. I've had No Evidence of Disease (NED) since April 2021. 

Your biomarker testing may indicate that immunotherapy is the right treatment for you. Your oncologist will create a treatment plan for you based on all your test results. 

Many times there are no clear symptoms of lung cancer until it reaches an advanced stage, so forgive yourself for not being able to recognize yours. I lost my voice in June 2019 and had a cough, and those symptoms were misdiagnosed for months as either allergies or acid reflux. This is more common than you'd think. 

Finally, I see that you're in Brooklyn. I'm a former New Yorker and worked in Lower Manhattan for years. I was exposed to the toxins after 9/11 and have been qualified into the World Trade Center Health Program. If you were also exposed, please look into filing a claim to the Victims Compensation Fund and getting qualified into the WTCHP (prior smoking history is irrelevant). It takes time and there is lots of paperwork, but it's well worth it. I engaged a 9/11 law firm to represent me but it's not necessary. I can give you lots of info if this is something that's applicable to you. 

There are resources out there, but Dr. Google isn't our friend. I rely on this site, the GO2 Foundation, American Cancer Society, American Lung Association and cancerGRACE. Information on those sites is more up to date and reliable. 

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Dear Judy, 

So appreciate your advice. It really lifts the gloom I’ve been feeling to hear what your doctor said about it no longer being a death sentence. You’re so right about avoiding the dreaded Google, and I’ve been down plenty of scary rabbit holes since the diagnosis. I’ll stick to those reliable sites - the stats elsewhere are hope-crushing. And thank you for sharing that you also didn’t recognize the signs earlier. I’m trying not to feel so down about the regret. I will definitely be relying on this smart, knowledgeable and extremely supportive group. 
I wasn’t near the WTC, but good for you for fighting for your compensation! 
 

Judyg

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Hi Judy. Echoing what Lou and our other Judy 😀 told you, don't go looking for stats. Not only are they out of date, they don't take YOU into consideration: your health, your treatment options, your age, etc. I've said this 100 times on this forum: stats are crap. Don't beat yourself up for missing signs. We all do, and our doctors miss them too. My former pulmonologist thought my cough was due to my worsening asthma. Wooo was he wrong. 

A little about me: I just marked my 6 year cancerversary as a stage iv adenocarcinoma survivor. We have so many long term survivors on this forum - they are the light at the end of an otherwise dark tunnel. Ask us anything - we're here for you.

 

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Hi Judy,

You must be feeling overwheled now, probably scared, but you shouldn't be. The lc therapy regiments are improved both for treatment and dealing with side effects of the treatments.

The important thing for you now is to get the proper diagnosis as specific as possible and then talk with the oncologists for the appropriate therapy.

Do not feel bad for not recognising any symptoms earlier, lung cancer is not an easy one to notice without a CT scan, it can be missied on RTG even quite often, and symptoms are not really specific and often come later.

Do not be afraid or uncomfortable to talk about this with friends and family, they will all be happy to support you or help you in any way, and do not refuse help if you need it.

Find ways to calm yourself if you feel panicked or stressed, again talking with friends, scrolling facebook, memes, whatever feels safe and warm at the moment.

Stay strong!

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3 hours ago, BroFTW said:

Susan, congratulations on your excellent milestone, and Stats are crap is a great mantra. BroFTW,  you hit on another issue I’m conflicted about- how to tell people. They won’t know what to say and may treat you differently. But in your experience, you got a lot of support. Happy to know it can go that way. Thanks everyone! I’ have oncologist appointment next week and he should have full bronchoscopy results, so I’lm sure I’ll be back with questions, and worries! Thank you everyone!

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When I was diagnosed, I told everyone. That was the right process for me. Only my hairdresser started crying. Everyone has been wonderful and they have not treated me differently. I'm lucky that nobody gave me any dumb suggestions. I suspect it's because at my age, most people had either had their own cancer experience or knew someone who did. 

I did create a Caring Bridge site to keep friends and family current on my treatments. I haven't posted much there lately because there's not much to say, but it was the best way to keep everyone informed when I was in treatment and afterward. 

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I've had 3 primary cancers and for each one I told everybody. It helps to tell people in a matter of fact way, to demonstrate that it's not a secret, your not acknowledging any stigma and you're fine with talking about it. I didn't have anybody cry or change how they related to me. I did have some unexpected people offer (and provide) support such as bringing meals, There were a few people with some- shall I say "different" ideas and suggestions, but they were all well intentioned. I've been comfortable with openness. However, I have no living close family members and some of the now deceased and some of the not-so-close (with whom my only contact is a Christmas card, if that) might have been more challenging if they were around.  So I do understand how telling some people can be hard.

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I was diagnosed last August, and I found the process of telling people the toughest step of all. It’s one thing to grapple with the unknown yourself, and a whole other one to share with loved ones. I have a fairly extensive family and a big group of very close friends, and I felt I had to tell each of these individually (including flying to Denmark and telling my mum and her sister in person), so it was a very long and agonising process.

Once I was done, I made a detailed post on Facebook to ensure that my other friends and family heard directly from me and, as Bridget mentioned, the stigma and awkwardness was gone. In the post, I asked that anybody who wanted to get in touch do so by email, rather than phone or text, as it allowed me to read and respond in my own time. 
 

For me, this has worked really well. I have had some lovely emails and offers from old friends of help, loan of holiday homes, prayers from every religion imaginable, and it all was unexpectedly moving and sweet.

I now make a new post for every major milestone ca every 2-3 months (scans, new treatments etc), and it makes it much easier for me to bump into an old friend or go to a party, as most people know what is going on, and we can mostly skip the cancer talk. People always tell me how grateful they are being kept up to date directly, rather than by rumour.

I suppose in my case radical transparency has been the best route, and I hope you find your own way through it.

All the best, Rikke

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