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lenr8

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I was just diagnosed with NSCLS adenocarcimoa this week. I am only 31 years old and I plan seeing my kids grow up, the youngest is 2. I have apet scan this week but the dr anticipates me to be at stage 3. I don't know anymore. I am battling with my insurance company, they won't allow me to go to University of Chicago for treatment. This is the most awful weeko f my life but my wife has been amazing through the start of this. I will continue to read this site it has helped me tremensously.

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Glad you wrote to us. Let us help. Hearing the news is horrendous, and we know. Keep talking to the insurance company, and don't take their first answer as gospel.

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Welcome len, A diagnosis of lung cancer is not what a person of your age expects i know. I am 34 and was diagnosed with sclc in march. The single biggest thing i have done to benefit my recovery is to find this forum here. You will find alot of love here. Truly not a better group of people anywhere in the world.

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LEN

Welcome! Not the way I would of like to have met you! But glad I did meet you :D

I Think it is terrible! when a person hears such bad news as you then have to fight with the Insurance co. too! Do you have HMO? Is that why they don't want you to go univ. of chicago" That is the place to go for good treatment of cancer!

I know so on as I was dx I went to the unvi. of wis.

Hang In there & keep fight the Ins co.

((((hugs))))

Estelle

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Welcome to the board. I hate that you have to be here, but this is the greatest bunch of folks I know! Perhaps in time you could get your wife on here as well. As a caregiver / family member, she will need support thru this as well. I have no doubt that this CAN be beat and we all will be praying for you! Keep us updated as we relly do care here,

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I can not express to you enough how much these people have helped me deal, as a caregiver to a mom with Large Cell LC, with the issues that come up. These people have come together under the most terrible of circumstances and they are all truly the cream of the crop. Both victims and caregivers alike. These people are truly the best people you could ever turn to for help and support.

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Hello Len; my very best to you and sorry you have to go through this. But, welcome all the same;

You will find a wealth of knowledge as well as much comfort and understanding on the board. But most important of all you will find SURVIVORS! :):) , People can and do recover from this dreaded disease so keep your chin up and yes it will be a battle, but you have your age and energy on your side. Good luck with your insurance co., give em hell!! :x

God bless, be well and again welcome, your in the right place!

Bobmc - NSCLC- stageIIB - left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Just wanted to welcome you to this board. You have come to the right place, we all feel better after we find it! Try not to worry too much, we are all in this together. My dad was just diagnosed with extensive stage small cell last month and began chemo two weeks ago. So far, so good, but I am still in shock and yes do get your wife on here, we would love to be able to give her the support she will need so much from people who truly know what she is feeling. Good luck and keep posting.

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Guest DaveG

Len: Welcome to this group. As you have already found out, you are among friends. I am sorry you have the need to find us, but nonetheless you are among the best people in the world. We all share one common bond, Lung Cancer. We understand your concerns, as we have already been there and have been through what you are now experiencing.

Concerning your insurance, call them back and ask to speak to the next level. Keep going up a level until you get someone who has the guts and the authority to make a decision. Take it all the way to the top if necessary. Don't be afraid to threaten them if necessary. Someone in the company has the authority for you to go out of network. Do not be afraid to call the State of Illinois Insurance overseer. Just remember this is your life, not their's. Contact a social worker at the University of Chicago and explain your plight. I care to bet the social worker will have a list of patient advocate attorneys who just love dealing with insurance companies. There are ways, you are the boss, you are the one paying the premiums. Now is the time to start collecting.

I don't mean to sound hard, but hard is what you need to be. I went out of network, twice. I told the insurance my reason and they agreed to cover, at a lower rate, but 60% is better than nothing.

I wish you all the best and take nothing less than just that.

Keep us posted and as I tell all the other "newbies": PULL UP YOUR KEYBOARD AND TELL US ALL ABOUT YOURSELF

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Thank you all for your support. I really does help. I have a pet scan today. The mornings are all the hardest of all on me, I wake up just dreading the day but later on I am ready to start fighting. The fight with the insurance co is in the media, so we will see. T hey want me to go to Indianapolis for treatment but the universuty of chicago is better, I am young enough that i feel it may make a difference.

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Hi Lenr8,

I want to welcome you, and invite you to visit here often. There is so much warmth, understanding, knowledge, and support here.

I can truly relate to how you must be feeling. My husband was diagnosed in March with extensive SCLC. In April, that diagnosis was changed to stage IV atypical carcinoid, but the diagnosis is relatively the same. It was such a shock to us as well. It was the worst time of our lives. My husband is also 31.

I/We still have bad days, where the uncertainty and the weight of this burden seem too much to bear, where the fear that time is too short, and the overall injustice of it all is crushing. But with the help and support of people here, friends and family, and especially now that we are actively fighting the battle in treatments, it has gotten easier to face each day. I've also had trouble in the mornings. I usually lie in bed for 1-2 hours each morning, not wanting to pull the sheet down and face what "might" be. I've been late to work everyday for two months. But, I usually feel worse for letting those feelings incapacitate me. I am angry with myself later in the day, for letting myself waste that precious time, that I could have spent being positive, being active and helpful, that I could have spent with my husband. I keep telling myself he is young, strong, and determined. He will fight this and win.

I know it is hard to stay positive out there, but you need to do just that. Know that you are going to fight one Hell of a hard battle, but you are going to win. Don't look at the statistics out there, because they don't pertain to you. You do not fall within any of the statistical studies out there. Most of those statistics are based on data from the last 10 years. There are such improvements in LC in just the last 2/3 years that the positive results of which are skewed in those statistics. Your age also doesn't fall in the average statistical groups, so your youth and health are on your side to negate those statistics. Just know, that there are survivors out there, and fight like mad. You can be a survivor.

I wish you good results with your Pet scan today. I will keep you in my prayers,

Carleen

PS. Where are you from, that the insurance wants you to go to Indianapolis instead of Chicago?

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:cry: I seem to be having a bad day today. Physically i'm fine but I'm depressed. I am trying hard to sta positive but it all seems so overwhelming. I have no doubt that I will win, I have kids I want to raise. But I'm waiting for my PET scan to see how far it has spread, naybe that;s why I am in a mood, I have spent alot of time reading through this site and it has helped me tremendously, but whenever I tell a friend about this and I hear their voice it gets to me, I haven't started any treatment yet and I all I want to do is start fighting.

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Gosh I know your feelings. Its awful to wait. we had to wait almost 3 weeks before treatment was to start because the Dr. went on Vacation. All the while I am thinking "YOUR TANNING AND MOMS CANCER IS SPREADING" but as soon as the first chemo was in, we took a deep breath, you will too. DONT listen to anyone other than your ONC. and these people here. No one knows what your going through but us and as someone here once told me "What the mind sees, the body can achieve" so turn away from the stats and nay-sayers and only come here for comfort and support.

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I think most people here will agree that one of the hardest parts of this is the waiting. You always seem to be waiting for something. Waiting to start treatment, waiting for test results, waiting for doctor's calls. I personally HATE waiting :evil::twisted:

Things do seem better once you start the fight. I don't know what it is, because chemo and radiation are hard, but emotionally it is uplifting.

Also, this is still new to you and your family. There is such a spectrum of emotions that a person goes through when first diagnosed. Psychologist say that at first we go through denial, then depression, bargaining, anger, and then acceptance. In my opinion, that is a bit mixed up, I seem to go from depression to anger back to depression, to bargaining, to depression.... Oh heck, I'm all of them all wrapped up together all the time. We often refer to this as an emotional rollercoaster. It really is... a rollercoaster from Hell, but with it's ups and downs. The beginning of every rollercoaster ride I know if starts with a slow crawling ascent up a steep hill from what seems like the lowest point of the ride. I think it is the same here. I can't imagine a worse feeling that that first month or two following diagnosis.

But, that is what we are here for. We are here whenever you need us. We are here to vent to, to cry to, to rage to. We are here to tell you "YOU CAN WIN THIS FIGHT!!!" Try and keep that positive attitude that I see in you. Don't think about the future and the "What if"s, live for each moment. Revel in the fact that you are here today and now with your family. Remember that nobody has a promise of tomorrow, that tragic accidents happen to people each day, and although this Damn disease is a threat to us, we do have right now to live, love, and find happiness and beauty. Don't feel guilty or bad about the feelings you're having, but don't dwell on them either. You are going to see your children grow up, get married, and have grandchildren. You are young and can beat this, just have faith.

Carleen

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Hey Len,

Well, I too am very sorry to hear your depressing news! And yes it is depressing!! NO DOUBT ABOUT IT!! Non the less, I was a stage IIIA-B and I am still here very soon to be 8 years later!! I see NO reason why you can't be a LONG TERM SURVIVOR as well!

However, PLEASE talk to your doctor's about getting on an anti-depressant medication! It's VERY VERY HELPFUL in this fight! No need to make a job out of this fight when there are drugs to help us get through it!! :)

And of course we will all do our best to walk the walk with you. Your NOT alone my friend!! There is much love and support here and we know exactly what your going through!!!!

When do you hear about your results of the PET scan? Did they do a Bone scan yet? How about a Brain MRI? Please keep us posted. The waiting IS THE WORST, but MED'S can HELP get through that wait as well! It just makes things a little easier on this journey!

Stay with us, and keep us posted. Your in very good company!

Warm and Gentle Hugs,

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Dear Len,

My heart just went bump-thump when I read that you are just 31 with youngsters of your own. Damn this rotten disease, anyway! Yes, you will have plenty of "down" days and feelings of depression...as everyone says, the waiting is the hardest and you just get through waiting for one thing with this monster, such as a PET scan, when you start "waiting" for the next thing, it seems. I know things settled down for me a bit when I was finally fully staged and decisions were set in place for treatment. I hope you soon have a plan of action and get started on it. Please know that it is perfectly OK for you to share your feelings and vent or cry or laugh with us...what better place or group of people to better relate, hmmmm???

Hoping that there will be some bright spots in your day to help cheer you...maybe a smile from one of your kids, or a beautiful flower, or a nice cloud formation. Also praying for the best possible outcome on the PET scan and please keep sharing with us.

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I did have a bright spot today, the insurance finally ok'd me to go where I want, that was not as big of a battle s it started ou to be, just like getting this crap out of me I will win.

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Hey Lenr8,

I'm really glad your insurance co has stepped up to the plate - that's a load off right there. Your second to last post stated that you're frustrated with the time it's taking to start treatments. LEN, LEN, LEN, it's up to you when you start your treatment; for you to be successful in the fight against this horrible disease, your treatment must start up here (I'm pointing to my brain). If you stay depressed, you'll have a tougher time with your treatments. If you can get your brain wrapped around the idea that every day from now on "IS GRAVY", that is, everybody thinks your number is already up, but you know different... you're going to be around for for your kids and everything else that is good in life... and who do they think they are thinking you're not going to be around to enjoy it?

Len, you don't have time to be depressed. Don't deprive your friends and family of that quality time they deserve. If you live it one positive day at a time, your days will add up, they'll turn into months, then years, and then you'll be one of the long term survivors on the board. It can happen.

But it has to start here( yes, I'm pointing to my brain again) Take care len, and tell us more about yourself, and keep us posted on your treatments as well,

David P.

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David P

Thanks for writing, each day it gets alittle easier its not been a week since I found out. Although I am still a little depressed I am already fighting it and when they start the treatments the fight will tougher for "it"

As for a ittle about my self as you know I am 31 have two small kids. I am a paramedic in northern Indiana. I've been married three years. I should find out today what the PET scan saw so I'm alittle anxious about that.

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I just got my PET scan results. They were pretty much what we expected no surprises. Primary tumor in rt lung 4 cm with some lymph node involvement in chest. One small node on adrenal gland but not in kidney and one lymph node by clavicle. Dr expects me to be in stage 3. I am just happy that there were no surprises.

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