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CLM

Terrified newbie

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Hi! I'm so happy to get introduced to this resource. I've had an xray and ct scan and all I know is that I have "malignant neoplasm of lung (both lungs, lymph nodes, and thoracic spine)." I'm feeling like there is no hope. I'm supposed to meet with an oncologist tomorrow to find out more. 

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Welcome!  Best place to be for resources and HOPE. Plenty of long time survivors on this site that can answer questions and listen to you

I am a one year survivor - stage 4 adenocarcinoma. Still here still trying different treatments.   There’s always hope 

I do remember the extreme anxiety I had when I was going through all the tests. Cancer?  Maybe an infection?

No one wants this diagnosis but once you meet your doctor and make your plan - you calm down and start your journey 

Good luck and keep us updated

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CLM,

Let me add my welcome to Lin's. I second her advice of meeting with your doctor, making your plan and especially trying to remain calm. Let me add this that may yield some insight into coping with diagnostics and treatment.

Questions? Here is a very good information source that is easily read about our disease. The tough part for most of us is learning a brand new vocabulary and Lung Cancer 101 helps.

Stay the course.

Tom

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I will, it’s amazing how much your response helps. I’m just so scared that I won’t survive for long, but your story gives me hope. Thank you so much.

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Hi CLM and welcome here! Tom G is a great example of a long-term survivor who gives a lot of people hope, as well as valuable information.  If you look around the site you'll find other long term survivors, too. Please keep us posted and let us know what questions you may have and how we can support you.

Bridget O

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Thank you! I’m trying to get into the dr today to learn the next steps. Ugh! Woke up scared, trying to be positive. 

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Welcome!  There most definitely hope!  I just wanted to share Lung Cancer 101 with you.  https://lungevity.org/for-patients-caregivers/lung-cancer-101/recently-diagnosed  There is a ton of great information, terminology and what to expect next there.  Thinking of you!

 

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I have an appointment tomorrow with an oncologists to learn about next tests.

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CLM,

Welcome to our forum.  I see you've met some of my Lungevity Family and they are super support.  As you go through this journey feel free to come here and ask any questions you may have.  Not every person will have every answer, but, as a group, there is limitless experience and knowledge here that surely helped me get through my own LC (lung cancer) journey.  

Lou

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Just wanted to drop in and also say welcome.  In the beginning everyone is absolutely terrified. It’s important to stay away from the internet which is fraught with outdated information. Anything six months old is already history.  Significant advances in treatment are being made with the FDA approving seven last month.  
 

It’s an emotional rollercoaster right now, know that we’re here to help you through this.  This is a wonderfully diverse community experienced in many treatment plans.  
 

You’re not alone, ask as many questions as you want and we’ll work to get you the needed support.  
Michelle

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Dear CLM

  Welcome to a group no one wants to join, but one that can provide you with a wealth of support and information!   I am now in my 5th year "living" with Stage IV NSCLC and I'm an active member of LUNGevity, but I primary post in the LUNGevity FB Groups and have only recently started to post of the forums to meet new members and also try to support you.   

   I still remember how totally overwhelmed I was when I first learned I had a brain tumor back on 3/27/15, after a very sudden onset of what I thought was Vertigo.  I was just four week out of hip replacement surgery and all my pre-ops including a chest xray done before that surgery had all been fine?    Once they found my brain tumor, I had more sudden neuro changes and was immediatley admitted to a Neuro Unit.   A week later and many more tests, I learned that I had Stage IV LC that had spread to my brain.  I also had a Pulmonary Embolism, despite have no chest symptoms, no breathing problems, no cough, not pain, nothing --- just two days of some dizziness and a feeling that something in my "head" was off?  Thank goodness my PCP sent me in for the urgent Head CT Scan and that's how it all begin.  Finding out I had Stage IV cancer while still recovering from the hip surgery was such a shock?  How could all my labs nd chest xray have been fine?   That's always been a question that no one can answer?  I have given up now on trying to figure it all out and prefer now to focus on getting through this.   I am very happy to now be OFF all treatment, "Stable" and doing well.   My next scans will be coming up in August, and I have now been lfor almost 4 full years.  I've had Stereotactic Radiation for the brain tumor which is fully resolved and has never returned and also then started on Chemo for the Lung tumor (nodes), followed by radiation and then Immunotherpay (Opdivo) which I feel was my life saver.   

  Please let us know how you are doing and how your appointment went with the Oncologist.   

   I wish you the very best - take care 

    Lisa

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Hi All, I had my lung biopsy Wednesday and I’ve been feeling pretty low and wiped out since. My GP called and said they had to give me a lot of anesthesia because I kept waking up and trying to talk to them. At one point I gave them a thumbs up, lol. I meet with the pulmonologist on Monday to get the results and then the oconologists on Tuesday. I was feeling very positive and I’m trying very hard to get back to that place. We haven’t told my kids yet (16 and 13) because we want to tell them once we have a plan. I told my husband this morning that I think I need to go on this group today. You all are so helpful. 
 

❤️

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Chin up!  Try to enjoy your holiday.  Here's how I got through a lot of the waiting ---DENIAL!   It's not cancer until they say so!  Prayers to yuou

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My friends here are right..."It's not cancer until they say it is", So, just for today; stay focused on your family, enjoy the holiday, feel the warm weather and let yourself feel good about what you do have.  You'll cross the future bridges in the future.

Lou

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You’ve already got what it takes to take on whatever happens in the days ahead.  Even an extra dose of anesthesia isn’t going to put you down.  So thumbs up to an enjoyable weekend!  

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Hi CLM,

I just wanted to let you know that there is always hope. I was diagnosed a year and a half ago with stage 4 Squamous Cell NSCLC and I was petrified just like you. I know that I felt much better once I had a meeting with my oncologist and having a plan in place. It felt good to be fighting back. I now go for Keytruda every three weeks and did so yesterday. Try to calm down and remember there are new treatments being discovered every day. It's not like the old days. Keep off the internet. Most of the information is old and outdated. There is always hope and you found it right here. Have a beautiful weekend. Peace, light and great scans to all, Claudia

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CLM

   Wishing you the very best - always feel free to stop in any time you feel the need to vent, chat or even scream -- we all totally understand how you are feeling and what's it like to go through this process.   If you are a FB User LUNGevity also has several FB Groups for LC patients -- This link https://www.facebook.com/groups/lcaware goes to the main group and you are welcome to join if you'd like too, it's the main group and there are also many wonderful members who post on FB as well as here on the Forum.  

    Hope you can get outside and enjoy the Holiday Weekend !   My Hubby and I actually were able to go out for a wonderful "seafood" dinner (outdoor dining) last night at one of our favorite restaurants was recently allowed to open for Outdoor (socially distanced dining).   Something we've not been able to do for many months (because of Covid).  Luckily, here in MA with the strict guidelines we've had in place our numbers are now at the lowest they've been and the case counts continue to drop.  I live in a small coastal town and we have not had ANY new cases in the last 4 weeks, which is wonderful.   We are still not "fully" open and masks are mandatory here and have been since March.    We love the fresh seafood and it was really enjoyable to get out and have a nice dinner.   I know for many that's still not possible, so my heart goes out to them, but for those who can get "out" and enjoy some fresh air and socially distance, it makes you feel somewhat "normal" again.    

    Things certainly are a lot different this 4th, but hopefully if we all continue to take lots of precautions we can look forward to getting back to normal by next year.   You are not far form me in CT, so hopefully you're also enjoying a gorgeous sunny day.

    Happy 4th to all!

     Lisa

 

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On 6/28/2020 at 4:21 PM, CLM said:

Hi! I'm getting nervous for my biopsy results that I get tomorrow. I know I have malignant neoplasm of lung (both lungs, lymph nodes, and thoracic spine). But I don’t know how good/bad it is.   I’m grateful for everyone’s survival stories. Reminding myself that every second my body is fighting! 

 

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CLM :

 

I am also newly diagnosed but joining this site was extremely helpful. There is no shortage of support and good advise but reading https://lungevity.org/for-patients-caregivers/lung-cancer-101/recently-diagnosed helped me understand how to interact with my doctor and ask the right questions. I wish you the best and be strong.

Gary.

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