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Jan J

Introducing Myself

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In less than a week my life has been turned upside down and shredded to bits. What I thought was a back injury is lung cancer. I am terrified. 

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Hi Jan,

Welcome.  We understand what you are describing all too well.  Almost 90% of lung cancers are diagnosed in similar circumstances.  Often times there are no warnings and your life is upside down in no time. 
Although it doesn’t feel like it now, there is hope on the horizon.  Lung cancer treatment has grown exponentially over the last five years.  I was diagnosed at Stage IV as a never smoker, initially with a poor prognosis but biomarker testing revealed a mutation that responded to an oral treatment called targeted therapy.  That was almost two years ago.  
 

We advise everyone in the beginning to stay off the internet as data that is six months old is already old news.  

The diagnostic process is often a hurry up and wait but it is critical to matching the treatment plan.  You’re in a good area with access to some of the country’s top specialists.   There is a lung cancer survivor from Whidbey Island, Diana Lindsay who wrote a book on how to navigate the treatment plan called “Something More Than Hope”.   I think you will find it helpful  

Take it one day at a time, know the extreme emotions right now will eventually pass as you start the treatment plan.  There are brighter days coming and we’ll be here for you to help you get there. 
 

Michelle
 

 

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Hi Jan J,

Welcome to the forums. I was diagnosed about 18 months ago and I remember being terrified just like you. Finding this site with the most knowledgable people was a god send to me. I agree with Rower Michele to stay off the internet. I found many "support" groups online and I was crying all day every day. I didn't realize that most of the info is so old and so many new treatments have been discovered. Having lung cancer is not fun but it can be lived with. I found that out over the last year and a half. I also know I felt better once I found my amazing oncologist and I had a treatment plan in place. 

I hope you are able to calm down a little soon and know that tomorrow may be a better day. Peace, light and great scans to everyone, Claudia

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Jan J,

I totally understand your feelings of being scared and having your life turned upside down.

I was also perfectly fine one day, and then diagnosed with NSCLC stage IV the summer of 2017.

What helped me the most was educating myself as much as possible about all the terminology.

It's an entirely new language and it will help you with your doc visits if you know some of the lingo.

Also, request that you record the visits so that you can listen to it later. It's amazing how much you miss 

when you are in the room with the docs, and when you listen to it afterwards, it really helps.

Bring people with you to the appointment that can help with taking notes and asking questions.

Ask any questions you have!!!

Thinking of you,

Ro

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Hello, Jan,

For me, reading a first post by someone new to this lung cancer world never gets any easier.  It brings me back to where I was when I was first diagnosed myself.  It was a few days before the Christmas and I did not think I'd be able to stop crying.  I just had some lingering cough after a cold, otherwise I was so perfectly fine, how can they say I have a lung cancer of ALL cancers?  So I get it.  We ALL get it.  More so than any of your family and friends will ever do.

If you want to learn about lung cancer, browse around Lungevity site.  If you have any (specific, general or random) questions, this forum is the place.  If you need to vent, yup, you can do that here too.  If (well, WHEN) you need support, feel very free to ask for that here too.

Here's my 2 cents for you:

Make sure your med onc (aka "hematologist") is someone not only darn good, but someone you like.  This is the main doc in your oncology team.  S/he should give you treatment options and you should have the final say.  Have a note book and pen ready for each appointment (regardless with which doc) and write down all the questions you have in between appointments and write down what the doc tells you as, especially in the beginning, you'll be bombarded with the info on top of your wrecked emotional state.

Lastly, I'm sending you a very germ free virtual BIG hug, hang in there, you TOO will be able to stop crying. 🙏

MB 

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Jan,

It looks like you've got to meet some of our family here and they've given you good counsel.  I'll also reiterate that you are not alone...when I was diagnosed I wrote myself off and 13 months after surgery I'm still NED (no evidence of disease).  As you learn more you'll likely have many questions.  This is a safe place to ask them and get answers based on first-hand experience.  

Lou

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Dear Jan,

    We have all been where you are today and we all know how overwhelming and frightening a Lung Cancer Diagnosis can be.  Please also know that there have been many advances in Lung Cancer treatments in the past few years and they are more and more LC patient's living long lives.  I am now in my 5th year and started in March 2015 with a pretty grim diagnosis.  I had a sudden onset of what I thought was Vertigo, but it ended being a brain tumor, and ultimately it was a "met" from Stage IV Non Small Cell Lung Cancer.   It was 56 years old and had just had hip surgery 4 weeks prior and had "passed" all my pre-ops (including a chest xray) without any problems.   Needless to say it was a shocking diagnosis and I had not signs of symptoms of LC and still do not to this day.  I've never had any cough, shortness of breath, chest pain or discomfort.  I've needed been on or need oxygen.   All I had was that sudden feeling of vertigo and went in for a Head CT Scan and they found a 4 cm brain tumor.  Within hours, I lost my speech and the ability of us my right arm or hand.  I was transferred to a neuro Unit at a larger sister hospital and when through a week of tests where they then learned I had a Lung Tumor, Lymph node involvement and also a Pulmonary Embolism - all a totally shock and all without any symptoms.

 Fast forward to today and I'm not over 5 years in, I'm 'Stable" off ALL treatment and have been on for almost four full years.  I still see my Oncology eveyr 3 months for a visit and labs, have my port flushed every 8 weeks and have CT Scans every six months.  I'll be under care forever, but that's okay as long as I continue to be able to Live Life!

  I wish you the very best and want you to know there are many others like me, who even with Stage IV are doing well !    LUNGevity is an amazing group and can provide you with a wealth of support and information!

  Please free free to ask us questions and we'll try and help you as best we can, based on our own experiences.    I also agree with Michelle (do not use "Dr. Google" to find information.  Much is outdated and it may make you feel even more overwhelmed.    Stick with the large Lung Cancer groups like LUNGevity.  if you are also on FB, we have several groups on FB and I post there on a regular basis.

   Let us how what you've done so far and what's going on and we'll be happy to support you....

   Take care,

      Lisa

 

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Hi, Jan,

I’m new to this as well. I just had my bronchoscope on Tuesday and will get my results on Monday. You’re not alone and everyone here gives so much hope!

❤️

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Hi Jan,

You're certainly in the right place. I found this group a little later in my journey and am so happy you've found us now! As has already been stated there is a lot of information on the internet, but nothing beats talking with people who are going through it with you, or have gone through it already. This is a great place to ask questions, celebrate successes, and find comfort on the hard days. 

Stay connected, and ask all the questions!

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Jan,

Welcome from the Emerald City!

You've already met a lot of folks. If you are comfortable, you might want to share the stage and type of your lung cancer and treatment plan with us. This information allows those of us with a similar diagnosis to respond with our specific experience. You may find this very helpful.

Here is something I share with most new folks on the site. I was diagnosed in February 2004 and had all kinds of treatment but I'm still here. If I can live, so can you.

Stay the course.

Tom

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