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Newly diagnosed with stage 4 NSCLC adenocarconoma at 49


RJN

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As newly diagnosed, I am hoping that this forum will be of support and help me understand this new reality I find myself in.

A bit about me: I was diagnosed with possible lung cancer around a month ago and had the stage 4 NSCLC diagnosis confirmed two weeks ago. I am now waiting for my treatment plan as they are mapping at my biopsy in terms of bio markers etc. It feels a long wait, but from what I understand, I should be happy they are doing all this work. I am fortunate to be assigned to a very good research hospital here in London, and will hopefully be included in a stage 3 research study. I am relatively non-symptomatic, barring some shortness of breath. Unfortunately, the cancer has caused a blood clot in my shoulder which causes some pain and has me on light painkillers and blood thinners. 
 

I do not feel optimistic as I know my prognosis isn’t great, but I am in a positive mood - I guess the lack of real symptoms, relatively young age and my general good health makes me feel a bit invincible (I can’t possibly have a fatal disease!). The hardest part so far has been dealing with friends and family, some of which have taken it very hard.

Anyways, I am so glad to have this forum to get feedback once I get into the weeds on treatment. Thanks for being here.

Rikke

Edited by RJN
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Hello and Welcome,

Like you, I was fairly young at diagnosis, age 51.   There is a strong possibility you have a biomarker given your age which as you indicate is why your treatment plan is pending.  I’m the beginning, the waiting is unimaginably horrible, we’ve all been there.

Telling friends and family is especially hard since  everyone has a different reaction.  People will take their cue from you.  As hard as this is to imagine, some people will forget you have cancer in the future.  Due to the numerous advances in therapy, many of us don’t look or act sick.   I’m three years into this, currently No Evidence of Disease (new way of saying remission) sitting in an airport right now, living a relatively normal life.  
A few things to keep in mind- diagnosis is not prognosis. Dr Google is not your friend. Anything on the internet is too old to be valid.  Ask of anything- there’s nothing too insignificant.   
I’m sorry you find yourself here and glad you found us.   
Michelle

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Let me welcome you here as well.  From now on, beside your family and friends, you now have us as your support.  We are a group of folks who have all had, or have, lung cancer and share our experiences to help others traveling on this road.  As you can, please provide more detail so folks will be able to better answer any questions you have.

In the meantime, there is a posting called "10 Steps to Surviving Lung Cancer; by a Survivor" written by our own Tom Galli and it is a wonderful distillation of smart and practical things to help you along the way.  It can be found here.

Please remember that while our disease is similar, each person is different and today's treatments are so far ahead of what was available even 10 years ago that lung cancer is no longer an automatic death sentence.  Michelle is correct in saying, "Stay away from Dr. Google".  There are people here who were diagnosed at advanced stages and are still going strong today.  So please stay strong and hopeful.

Lou

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Welcome Rikke

As Lou said, you have found a great place with a lot of information and support. We really understand what you are experiencing and the challenges ahead...from surgery to Chemo to radiation. Also there are several members who are in cutting edge trials. Since you are from the old country some of the terminology and treatments may be different but there are numerous British members as well.

Wishing you the best. There are more and more treatments coming on line. I was diagnosed 18 months ago and in that short time period there are several new treatments that look promising. Keep the faith

Peace

Tom

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Rikke, sorry you have to join us, but you are in the right place for support and information. Your medical team is taking the right approach although it is hard to wait for all the information to come in. My 2-year "cancerversary" is coming up next month, and back then I'd never have expected to be in remission (NED) as I am now. 

It's good to have a positive outlook. Hang in there and let us know when you get your treatment plan. 

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Hi Rikke - I know this is overwhelming and hard to stay positive, but there are many folks here who have survived this disease for a long time. I was diagnosed with stage 4 adenocarcinoma 5 1/2 years ago and have been NED for almost 3 years. We have more treatment options than we did 5 years ago so I see that as a big step in the right direction. 

Just remember we're all here for you. Let us know how we can support you.

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Gosh, I am in awe of what I am reading in this forum. Although I am generally of a positive mindset, I am actually starting to be optimistic seeing all the real-life story of people halting this nasty disease in its tracks. Reading about your journeys, ups and downs also helps me mentally prepare for the road ahead. I am so grateful for all of you sharing. And yes, as someone working daily with statistics and (mis)information, I am conscious of the dangers of Dr Google - but he did lead me here, so not all bad😜

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  • 2 months later...

Update: my main tumour and nodules have all been reduced by 20-25% after only 5 weeks and two Keytruda infusions. For the first time since all this began, I am starting to feel genuinely hopeful, and also so happy to lift the mood in the family!

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That is very good news!  Those results sound impressive and are definitely moving in the right direction.  Enjoy the good news...have fun with your family.  Laugh and make some nice memories for this holiday.  And please keep us updated.  We all love to hear news like this.

Lou

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