CSN Login
Members Online: 10

39yrs old male. with a family. non smoker. just diagnosed with stage IV NSCLC.

stunnedinCanada
Posts: 1
Joined: May 2010

39yrs old male. with a family. non smoker. just diagnosed with stage IV NSCLC.

My PET came back and my whole left lung lit up.

As did the lymph nodes around the lung. A left posterior rib. My Iliac Crest bone. T2 in my spine.

A month ago, I thought I might have had allergies or pneumonia. Today, I fear I may not see the birth of my child in December.

I do not know what to do next. Heck, I don't even know what to call my situation. Am I dying? Does saying that mean I'm being defeatist? Everyone keeps saying a positive attitude is so important... but give me a break if I can't feel depressed on hearing this news somebody's expectations are out of whack...

Treatment should start next week if I can confirm whether I am EGFR or Alk positive.

But what then? How many people actually survive for very long when they are where I am?

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Stunned in Canada,

Some time back I saw the results of a study comparing the outcomes for people with positive attitudes to people without - there was NO difference in outcome. The only difference is possibly in the way the people felt along the way - you know, if you're positive you feel better, even though the outcome is the same.

You're not dying, you haven't even begun your treatment yet. Sounds like you and your oncologist are looking at targeted drugs, which can give great results. I started with lung cancer in both lungs and a lymph node, had mets to the brain and brain surgery, and today after a clinical trial with a targeted drug and then Tarceva, I'm in remission. Also, I don't have the EGFR mutation and the Tarceva worked for me anyway, does that for plenty of people.

Just take things a step at a time. I've made it through five years and I'm still here with all my parts, working full time, walking, talking, playing videogames. Science is great!

I hope for the best of luck for you :)

Deb

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

You absolutely have a right to your feelings. If you are feeling depressed, I believe that is understandable. But don't ever give up hope. You have some wonderful reasons to fight this awful dx. So when the depression subsides and it probably will ( if it doesn't don't be afraid to ask the doc for something.)focus your energy on getting better. Focus your entire body fighting off the cancer. And when that baby is born next dec. give it a big hug and kiss for everybody here.

Best of luck, and God Bless.

c

kristybree
Posts: 1
Joined: May 2010

Hi, My mom was diagnosed 2 weeks ago with stage 4 non small cell lung cancer. It is too close to her spine to operate and she has lost some sensation in her legs. She has had radiation so far. we are waiting to hear when she can start chemo. That is great you are doing to well.

I am looking for something to compare to. What kind of lung cancer did you have. what is this Tarceva drug i am reading about? Are you from Canada? Is that something we can get here?

Kristyn

deb_needhope
Posts: 38
Joined: Jun 2010

My sister and I found out last week that my Mom has Stage IV Lung Cancer. She's 71 and has always been healthy. She watches her grandchildren all the time. She went in for a routine doctor's appointment 2 weeks ago and had lost 7 lbs and complained of minor back pain. She had an x-tray which lead to a CT scan and we were told she had a tumor in her lung, liver and brain.. Talk about shock.. I stayed strong for her in the doctor's office but cried when I got home and shared all the news with my husband.

My sister and I have been researching everything. This site has helped me have a glimmer of hope.

The first oncologist we met w/was cold and didn't offer much information unless we asked. We're meeting with a different Oncologist this Tuesday, at a different hospital closer where one of us lives so we can take her for treatment.

My mother has always been our rock, advocate and best friend.. We're all praying hard everyday to have many more years with her.

rlotempio2
Posts: 6
Joined: Jun 2010

I just found out today that my grandmother, 73 years old, has Stage 4 lung cancer that has also spread to her liver. The doctor says their is no cure. They will do a brain scan to see if there are any cancerous cells in her brain and I pray to God there are not. If the brain is clear and it hasnt touched the bones yet, she can try chemotherapy on July 1st. She is my true mother and I would be truly lost in this world without her. She is hopeful and feels the chemo will clear it up but the doctor made it sound more like a death sentence. I have never been so scared in my life. She is being treated at Roswell Cancer Institute which is supposed to be the best in my area. Any hope for a few more years with this beautiful woman would be greatly appreciated. I am looking for survival stories of a few years or more with this awful diagnosis. I am hoping someone out there has beaten the odds that Ive been reading about. I am desperate for hope.

grandmado
Posts: 10
Joined: Jan 2006

Please dont give up the fact you can and will survive this. I will celebrate on July 7 this year being in remission 7 yrs now. If I can do it so can you. I am 78 yrs young and had 35 radiation with concurrent chemo in 2003. New drugs are being used now with great results.
you may not be cured but you will get to remission hopefully. that's all we can ask for.
Your not a defeatist nor are you dying. Your scared and rightfully so. If you can read some of the posts on here you;ll find plenty of heros who have been in your position.
stay positive and above all take one day at a time. goodluck.

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
You have every right to feel what you are feeling and have to acknowledge the shock that comes with all this bad news. I am on the esophageal board but have a close friend with Stage IV Lung cancer. This is why when I saw your post I wanted to write to you. She had been told after they opened her up almost 2 yrs ago to pray for a miracle, when they found the cancer had spread farther than first suspected, but they gave her more chemo and then she was put on Tarceva for almost 1.5 yrs now and is NED, no evidence of disease. She had it in her lymphs, mediastinum and more than one place in her lungs. There is always hope, because they come up with more and more drugs that fight off the cancer. So after you recover from your shock, find the best drs you can and go fight it for your wife and your children and the rest of your family. People mean well when they talk about a positive attitude and believe me, I have heard it all, but you can say you have to be a realist with a positive attitude and if they don't have cancer, they can't tell you how to feel, actually no one can, it is so different for everyone of us that walks this road. My prayers for you!!! good luck.
Donna70

gkukurin
Posts: 9
Joined: May 2010

Hi Stunned,

We were just informed (Less than a week ago) that my father-in-law has stage IV NSCLC. It is comforting to read some of the responses here. The oncologist we spoke with was pretty depressing. So much so that we are/were considering alternative approaches from the get go. After reading about some of the results with Tarceva we might try that instead of European other alternative therapies.

Keep your head up Stunned, we are just now shifting from stocked paralysis, to getting ready to rumble.

Any one on the board have any experience with whole body hyperthermia, insulin poteniated chemotherapy or cancer vaccines?

Prayers_R_amazi...
Posts: 5
Joined: May 2010

I joined this site b/c my husband was dx with lung cancer, had surgery, did chemo and now is cancer-free! He is now doing a "drug research study" for the next two years, of course 50/50 medication v/s placebo.

His was also NSCLC. The first thing one wants to do including their family hence me wants to "freak out" but you just can't.
God has a purpose and reason for everything that we experience / deal with on a daily basis.

I know it is easier said than done but trust me, you will and your family will get through this. Prayer is Awesome & Powerful and our communication to God, so utilize it.

Since the dx and everything that followed: my husband and I are so much closer to God, more faithful with our prayers and totally involved in our church. We even created a prayer site while he was in the hospital.

I will add you to our prayer list and site (if you would like) b/c prayers are so amazing.

Please keep us posted. You have a baby coming in December, so you have so much to fight and live for - don't give up!

God Bless
Michelle

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I know it's hard to keep a positive attitude when you are first diagnosed. I don't think I developed mine until I started treatment and felt like I was doing everything in my power to fight this devastating disease.

Until I started treatment I was in shock and depressed - automatically thought I was going to die. I was diagnosed May of '09 with NSCLC in my left lung and then a couple of weeks later I was diagnosed with SCC in my larynx. I thought WOW - this really is a death sentence, not only do I have to fight cancer but I have to fight two different types of cancer at the same time. My first great grandchild was due to be born in December and neither my family nor I thought I would be around to see him born. Guess what - I'm still here a year later and I'm still fighting!!! And I have the most beautiful great grandson and I plan on watching grow up ;-)

I am not cured but I am in remission. I still see my ENT every month and still going for scans every three months but I won't complain because I am still alive and have adjusted to my new "normal". My doctors are very open and honest with me about the future, I will have cancer again, whether it's a recurrence or a new cancer they can't say, but they did tell me that I could stay in remission for years. I lost both of my brothers to cancer so this doesn't come as any shock to me but I do know that one brother was in remission for over 5 years but refused further treatments when his cancer returned. That was his decision to make, we all wished he would have fought it again as I know that I will fight with everything I have to prolong my life.

Sorry to ramble on, I am just trying to say that you have to fight and I see no better reason to fight than the upcoming birth of your child. Please read more of the posts on this forum and you will find many long term survivors who were not given a very good prognosis.

Please stay strong and keep fighting. Post again to let us know what is happening as there are many wonderful people here who will help you with any information, suggestions or questions you may have. We are also here when you just need to vent ;-)

My best to you and your family,
Glenna

pkaz53
Posts: 84
Joined: Nov 2005

Don't ever give up try to keep a positive attitude I know when you get the initial prognosis you go into a state of shock you can't eat, can't sleep and you can't even think right. You have to accept it for what it is and get yourself mentally ready to take on your opponent its going to be the hardest fight you ever faced. I've had cancer twice bladder in 2001 and then SCLC in 2003 and still surviving. There are many survivors on this discussion board who walked in your shoes and felt as you do right now --stay strong - keep your faith -you will and can survive this my prayers are with you.
Paul

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

I am one of those keep a positive attitude people, because it sure beats giving up. I am a 2+yr both SCLC and NSCLC, with 30%of my heart working at this time, suffer TIA almost every month, have early onset of Altzheimers and Parkinson, am limited to a power wheelchair to get along, am on Hospice, and the cancer has mets to Bone and Brain. Do I get depressed, heck yes and angery too. But I also want to live as good as I can, so I try to keep a positive attitude.
Does it mean I will live longer, who knows. But I can Laugh with my wife and family. I am getting through the best way I know how. I just turned 50 this month, and there was a lot of celebrating here, because I am still going. I even had my 5 grandchildren come here to spend time with grandpa.
No one can tell you how to live and I by no means am trying, as an old biker and Marine I am hard headed and live the way I see fit. But I hope that you can find a positive in this and hold on to it. There are plenty of survivors on this site, with more years than me, so dont stop believing that you can keep going. That is one thing I have learned for sure, not to give up Hope.

Our Prayers and Best Wishes to You, Your Family, and Everyone..,

Dan (cobra1122) and Margi Harmon

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

Your to young to give up on Hope and you have strength to help you thro this. I wish you well and no matter what or how you chose to fight this disease, there will always be people on this site that are here to bounce things off of.

Our Prayers and Best Wishes to You, Your Family, and Everyone..,

Dan (cobra1122) and Margi Harmon

kv1967
Posts: 6
Joined: May 2010

I just wanted to say thanks for your story Dan, I am also going through a similar situation. The stories here help becauce they give hope and the will to fight. I was shocked with my diagnosis because I don't feel sick, my lung function is normal . I start radiation to my head this week . I'm sorry is this doesn't make much sense but I'm still trying to get a grip on things

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

I hear you, the sudden slap on the face, and it comes from no where. It is the hardest thing to comprehend. when I had my first heart attack at the age of 33 yrs old, I was in disbelief, I was too young ,in good health, it only happens to older people, what the heck is going on.
After the Cancer diagnosis I was lost in my own mind, what are they telling me, I dont have that, it happens to others but I cant have it. I was just a year before having a stroke so this cant be happening now, I am getting better from my stroke so this has gotto be a joke.
SHOCK is not even the word for what I was, but eventually in sank in and I learned to adapt, improvise and overcome what this diagnosis brings. We learned to laugh our way through this, and keep a positive attitude just to stay sane ( if we ever were).
Never apologize for your feelings it is your right, unless someone has been through it they cant understand what this does to a persons brain or thought process. Sometimes you'll notice that I go off on some weird tangent, thats cause my brain is trying to speed along with everything and not let a peice of info fall away. Hang in there, we're here if you need us.

Our Prayers and Best Wishes to You, Your Family, and Everyone...,

Dan (cobra1122) and Margi Harmon

kv1967
Posts: 6
Joined: May 2010

This was especially hard for me because i watched my mother die of sclc 11 years ago. I remind myself everyday that I am not dead yet and I am not my mother. I am 42 years old and have a wonderful wife and twog
great kids. I will survive this. In my talk with my oncologist he told me that he will help me. I know there are no guarntees in life but I unted to stock around for a while longer.

Kevin v

congoody
Posts: 74
Joined: Jan 2010

No one deserves to get cancer - no one decides who will get cancer - no matter what the stage or what your age, the shock and the anguish is not comprehensible unless you have been there - although I was "lucky" to have caught my cancer early, the risks for recurrence are high and my anxiety and fear are incomprehensible - I hate that the first question is "so how long did you smoke" - this is not a normal response when someone tells you they have cancer - it is usually "oh, I am so sorry, how can I help, what can I do " - but not with this one - I am also from Canada and wish you a future filled with health and happiness - warm regards, Connie from Canada.

DONCARLOS
Posts: 66
Joined: Jun 2009

Hi: I have not written for a long time. This coming June 30, will one year since I had part of my lung taken out and members of this list helped me like you have no idea. I even experienced the breaking of my family when my wife could not stand my position any longer she left me and moved with one of my daughters left me alone with only a few months after my surgery and all because I drove her nuts with my constant worries about dying. I had every scan made and according with Drs. am clean of Cancer However, on January 18, 2010 they found that I had an ANEURYSM 4.8Cm on my Ascending Aorta and that made me go crazy again and that is when my family broke up. I have not learned yet how to live thinking about this thing rupturing, HOWEVER, I HAVE TOTALLY FORGOTTEN ABOUT CANCER. I will not see my Onc or my Thoracic Doctors until July when they will do anothner C Scan. I confess that I am totally lost becaue I am deadly afraid of the aneurysm although the Drs. want me to wait because they don't think its critical under 5Cm. You see...... You must have faith or you will drive everyone around you crazy, I am alone now and suffering even more because although I learned to live with the Cancer problem I am now building on something else but......I am learning to live with that also. I am 77 years old and I do feel OK, but extremely insecured. I do not see counselors, because I know what I have and what to expect. I have not given up I just learned that there is not much I can do about these things except follow Doctors Orders. Hang in there and you will be OK. I don't think my wife will ever come back but that is another issue. She is living happy with my oldest daughter and I am living with my youngest and her two children. I AM NOT HAPPY but I am learning how to cope with my situation. YOU WILL BE OK. Keep writing and reading this board.

HAPPY MEMORIAL DAY TO ALL OF YOU, FROM A KOREAN WAR VETERAN.

DON CARLOS

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

@ Don Carlos
I'm sorry to hear about your split with your wife. I confess I don't understand how your fears drove her away and I think you are taking on too much responsibility for this...but when I get my marriage counselor license in the mail I'll let you know :) That and my medical license.

Anyway, you've been missed!
Deb

DONCARLOS
Posts: 66
Joined: Jun 2009

I know for sure that I drove her crazy, so she went to live with my oldest daughter.

I appreciate this list because its not the cancer or the lungs but the consequences that we face from these crisis. I am learning to cope. Believe me all of you guys helped me for the last year and it took me some time to write back because I was also getting into some nerves :-). I will try to keep my responses more positive and cheerful.

Love you all

DonCarlos

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My husband of 36 years was treated for Throat cancer last year, He had 7 weeks of radation and Chemo. They said the got it all. But now They say he has stage 4 NSC squamous, both lungs, He can not have some of the treatment as he has already had it.Most the trails they do he will not be able to have because he had the treatments. They said he was healhty . But they gave him a year with out treatment two (maybe) with treatment. He never smoked nor drank .I know he is scared as I am. My heart is broken casue this is something I can't fix for him. We have two adult children. But really no friends. So I know the road we have will be all up hill. I know I don't write well enough to explain the feeling we have . But I truely belive that we will make it. But deep in side is the what ifs.

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

You and your husband have been through this road already, but together you will get through it. You described your feelings just fine, as it isn't easy to deal with everything this disease brings along.
I pray that Gods Will be done, and that the both of you can cherish this time you have. It sounds as tho you've had enough experience in this to know that there are no forsures as in 1-2. Yrs. I was diagnosised in 08 with stage 4 lung cancer with mets to the lymphs, they gave me 1 to 1-1/2 yrs with treatment along with my complicated health issues i' ve beat every prognosis they have given me. So don't give up hope, it will help you get through these times along with a positive attitude. I am 50 yrs old , my wife and I have 3 children and 5 grandchildren, and we just keep plugging along, living for today, creating memories, laughing, and living.

Our Prayers and Best Wishes to Your husband, You, Your Family, and Everyone.,
Dan (cobra1122) and Margi Harmon

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Cobra,
Thank you somehow, the word cancer scares friends away. Or maybe it is that feeling of pure fear of the what ifs. We went to a cancer center and It was strange the second word out of their mouth was 25 dollar co pay. Quite different from Ann Arbor. Not once was payment mentioned. The doctor at this place said Well we have to keep in mind we are a business. I was so sad when we left there. I want my husband to go back to Ann Arbor. I think they have more to offer and they seam to cared.
I just want to help my husband Greg get the very best care and treatment. I am trying to read up on and find what is best for him.
We are trying to get on with life but I think the fisrt few days are shock and why us things going on. We will take everyday we can get!
Thank you so much for reading my post and making us fell a little less alone. That truely means alot.
We have two Adult Children (not married), four cats ,two dogs. No grandchildren . My family lives 700 miles away in another state my husbands family live 200 miles away in another state. Not a close family.

cobra1122's picture
cobra1122
Posts: 245
Joined: Jul 2009

There are a great bunch of people on this site, with tons of information. They are here anytime you need them, just run the keys and they will answer.
I felt that my wife and I were all alone with this disease til I got on this site. I have read alot of informative posts, and read alot of real human interaction that can only come when people truly show their compassion. I am fortunate that this disease brought into my life many people I would have otherwise never met, and in that I am thankful. Strange to be thankful in anyway for a disease but one of the side effects was to show me real humanity.
Keep youor hopes up there are all types of new treatments on the horizon, and who knows what the next ten, twenty, or even couple of years has to come. I can only say that I am thankful for those I have met on this site, and for all the info they have given me.

Our Prayers and Best Wishes to Your Husband, You, Your Family, and Everyone..,

Dan(cobra1122) and Margi Harmon

MissAngee
Posts: 7
Joined: Jun 2010

okay first, My heart and prayers are with you. I was in your shoes several weeks ago. I was given a death sentence of one year, possibly less. The doctors that diagnosed you don't know what else to tell you. They can't. You're oncologist can't even tell you how long you have to live.

I have Small Cell Lung Cancer. IT spread to my ribs. After being told I had this and ten the minimal prognosis, I was set to go home and die. My oncologist told me something different. Told me to think positive, live your life as normal as possible and let God and the chemo do it's work. I've heard success stories and then I've heard the opposites. Today was my first day of chemo. I feel good and optimistic.

Stunned in canada. YOu have every right to feel depressed, scared, pissed off, worried, nervous, anxious... The cancer is in YOU. Not others. they mean well, but they are not you. I have cried and cried and cried and my husband has been there to hold me everytime. I asked the why's the what I did to get this, the how did I get this. I keep hearing It's not your fault. WHAT?! The cancer is in ME! How is it NOT my fault!? But instead of feeling sorry for myself, I decided to pray and get on these social networks and find other's who have survived or going thru.

IT's not easy. I could tell you, stop researching cause it only gives you a headache, like me. But if you DON"T research you don't know. I was told one year from the date of diagnosis. Honey they don't know if I have Lung cancer Metastatic or Bone cancer metastatic. For a healthy person who doesn't smoke, it came as a shock to me.

But you keep your head up and cry when you want to. Talk to God. He hears your prayers and cries. HE heard mine! Im still alive!

God bless you and PLEASE keep us updated

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network