Hi. My father was just diagnosed with Stage 3B NSCLC. It is inoperable because of the location of the lymph nodes affected. Does anyone have a realistic idea of what we are supposed to expect here? What is the life expectancy? I need REAL answers. I do not plan to tell my father because he is starting chemo once a week and radiation 5 days a week on the 26th and I want to keep his hopes up. Please be real with me here. I really need to know. Thanks so much. God bless you all. By the way, he is only 55.

mishymay3-

I am sincerely sorry about your dad and that you too have to suffer the emotional baggage of this disease. Based on the info you provided, statistics say that you dad has a 5-17% chance of being here 5 years from now. If he did really well and beat those odds ...who knows how things might turn out.

As for "real" answers, until recently there hasn't been a real soild commitment to research in fighting lung cancer. It has always been dubbed a "smokers disease" and the attitude towards LC has been that those who have it are accountable. Much more has been given to fighting other forms of cancer ...like breast cancer. However, the truth is that we are in a large part responsible for our health and taking care of our bodies. I am sure that other cancers could have been prevented as well, so I think the position on LC is shear hypocricy. But the good news is ...that is changing and some progress is being made. The longer your dad and my wife can keep fighting, the better the chances are that more promising treatments might become available. My wife is stage 4 and statistics only give her a 2% chance of surviving 5 years. But I am beyond the grim prognosis and on to the fight. And I hope you and your dad will do the same.

God bless you both,

conan

Hi Mishymae3 well every case is different and treatments are different. In my mom's case she was diagnosed with metastisized brain cancer on Aug 28/05 and suspected LC is where it started. The Dr who diagnosed said at that time 4 months-I was mad-I thought how can he say that, they haven't even located the source for sure. They put her on antinausea and steriod meds, she lost her ability to walk without assitance almost immediatly, couldn't believe it. Next they did a median scope of the lung and determined what stage LC she had-it was stage 4. I became her care giver over the next 4 months-we lost our mom Dec 30/05 exactly 4 months and 2days from what the DR said-incredible considering we were so upset with that Dr and telling us that with absolutely not a care in the world. Mom smoked and my observation of the Health care services where we are, no one could be bothered. She had 6 treatments of radiation to the brain and 1 treatment to the lung after the treatment to the lung she really went down. The 5 treatments to the brain were pallative to shrink the brain tumors. I felt she was not given the care and respect she should have recieved and finally stepped in to say at least give her meds to keep her comfortable and so she wasn't so scared, she was so scared. If you feel they are not treating him professionally make sure to stand up on his behalf to the Dr's & Oncologists if it's pallative they have no answer's because they don't know what to do. And heaven forbid you take up a bed a person who is going to live could be in at the hospital. Our ordeal shocked me, but my mom was so brave and kept saying" well I guess people are worse of than me". Don't mean to bring you down with my experience but when I was looking for honest answers no one wanted to discuss it- I soon figured it out. My thoughts are with you, it's tough.

No one can give you the answer you are seeking as no one but god knows how long your dad has. We are all different and respond to illness and treatments differently. Doctors base their estimates on stastics and your dad is not a stastic he is a living breathing person. There are no REAL answers except that you need to take things a day at a time and concentrate on the fact that today he is alive and deserves to be treated like any living person, Do not let yourself slip into the" death watch" mode as then you will miss alot of life , instead you need to celebrate each day.

There are so many new treatments and drugs in the pipeline and who knows what they will bring to the treatment of lung cancer. Tarceva has allowed some people much more time then the doctors gave them and I have met several that are no evidence of disease ( NED) for 2 -3 yrs now from Tarceva and the earlier drug Irressa so you just never know. Their saying is" We love NED!"

I do not think doctors should give people time frames as some people believe what they say and what we believe does affect our lives and can effect the time one lives. My mom was told 6-12 months with treatment and she saw that as a challenge so set out to prove the doctor wrong and lasted almost 2.5 yrs but alot of people see what the doctor says as truth and do not challenge it.

Watch out for things like infection and malnutrition as they are the reason so many die so soon. Most will die from one of those two or organ failure, Be on the look out for fevers and do not let the doctors dismiss them as nothing my mom's doctor dismissed a low grade fever as being the cancer. I pushed for tests and she had an obstructive pneumonia with a total white out of her right lung And a urinary tract infection had I not demanded tests she would have become septic and died and would have been one of those 5-6 month stastics. If you want to help your dad become his advocate and learn as much as you can about treatment options. I have to run as I need to get to work. Feel free to ask as many questions as you want as usually someone here can offer answers or share their experience. JanMarie

Thank you to all of you who posted. It means a lot that you would take the time to post to a stranger. I feel so helpless. I am learning as much as I can about this so that I can try to help in any way that I can. He starts radiation on Monday, the 26th, with chemo once a week and radiation 5 days a week. I think he is getting 25 treatments in all and then they will do another catscan. I have a question for you all. Since I am not at the doctor's appointments, I hear everything 2nd hand, but my father and stepmother told me that the doctor said that this cancer is not from the cigarettes. Is this something a doctor would say just to get my father to stop beating himself up about or do you think he really means this? He said it was genetic, however, there is no cancer in our family that I know of. How could the doctor be so sure of this. I mean, my father has been smoking for 37 or so years.
Thank you all for your help.

Hi,
I still come through here time to time to see how everyone is doing. I saw your post and felt like I should reach out to you. My wonderful husband Bud started showing symptoms of "something very painful (heart-attack like) in Nov 04 2004, one month after we married. He was dx with stage IIIB nsclc by April 2005. He was as healthy as a horse, 55 yrs old, and thought he had a pulled muscle. It took the V.A. system from Nov 2004 until April 2005 to determine that he was inoperable, lung cancer not heart problems. I did some online research and found out that the "average" life expectancy is about 20 months. My hubby lasted 24 and he faught HARD. Of course, since I was his caregiver, we BOTH faught hard. My advice is this. Keep an eye out for pains in weird places down the road. Like back pain, and leg pain. Sometimes that means progression and metastasis. I don't want to scare you, but this is the world of cancer. Each person reacts differently. JanMarie's mom was in her 80's, a NON-SMOKER, and in general good health. She outlived Bud. Treatments affect people differently when they are smokers or non-smokers. Bud smoked like a fiend for over 30 yrs and quit about 9 yrs ago at 49 so he would not get LC. But the damage was done. The drugs they treated him with did show some success, but ultimately, he was worn out and could not fight the fatigue, the lack of appetite, the feeling of not being able to fight anymore. It was his choice when to stop treatments. Ultimately, there was no choice. He bacame so weak, that treatments had to be stopped.

As Conan so well put, new ways of treating are coming out and there are chances for those that are still in the fight that were not available to our loved ones while they were fighting. Don't ever give up hope because hope is what keeps you going. It will keep you strong for both you and your dad. I will keep you in my prayers and keep us posted on how things are going.

Love, peace, healing, and prayers...

Jan

Dear Jan,

Thank you so much for replying to me. I am so truly sorry for the loss of your husband. How unbearably difficult this must have been on you and your husband.

I am trying to do all that I can to help but it is difficult since my stepmother is involved. I wouldn't mind, however, she is in denial and she doesn't have that fighter mentality. My brother and I are on her to get a second opinion. Not that it will change anything, but when dealing with something this deadly, we feel a second opinion is mandatory. I doubt that they will, though. My brother and I weren't really in the picture too often when my stepmother came into the relationship. However, it seems like we are the ones pushing to try to extend his life. I know she loves him but neither of them are fighters.

Have you ever heard of NSCLC not being caused by cigarettes? Supposedly, the doctor told my father that this was not caused by him smoking for 37 years...he said it is genetic. However, there is no lung cancer in our family that I am aware of.

Thank you so much for your help and please take care of yourself.

Warm hug and peace sent your way.

Michelle

Michelle.

My dad was initially dx with Stage IIIB NSCLC as well. I live a distance away from my family and always heard things 2nd hand as well. Do not be afraid to get your name on the doctors list of people to talk to. I called my father's oncologists after each appt so that I could hear any news "first hand". My mom lived in denial until the day he died (February 5 2007). That denial worked for her. everyone copes differently and the most frustrating part of the cancer for me was that I could not make my mom and dad "Fighting Mad" like I was. My dad's cancer WAS directly caused by smoking, however there are certain strains that are not caused by smoking. In fact certain treatments are dependent upon knowing whether the cancer is genetic or "self induced" for lack of a better term. (no offense anyone... I just didn't know how else to put it.) I know for a fact that Tarceva works well for those cancers that are genetic.
I also had a hard time with prognosis. No doctor would give us a prognosis because of what Conan so eloquenty put. However, living far from home, I am ashammed to say that I was truly trying to live my life with his cancer prognosis in mind. "Should I take that vacation. Should I go home for this Christmas... will this be the last". Finally, I realized I was killing myself with this constant worry. You must live with no regret!! That is what I feel I did. All the research I did told me that a HEALTHY person DX with stage IIIB NSCLC had 18-24 months. My dad had some other medical conditions that he had to fight. He made it 18 months. 18 months longer to know and love his 2 grandchildren, 18 months longer to be married to his wife of 43 years, 18 months longer to see his daughters successful in career and family. PLease do not get caught up in the death watch as JanMarie stated. But DO get caught up in the LIFE WATCH! Tommorow would have been my dad's 66th birthday.

HEP

Amen to Hep!!!!

This is how I am finally beginning to look at "going on". My heart has a heavy weight it bears for the things that are no longer. I know Bud will never walk through the door again, I will not see " Bud cell" pop-up on my cell phone display when I hear it ring...my list could go on and on. I came so close to wanting to give up on myself. The temptation was almost overwhelming.

Then I began to look at blessings. At first, it was the ability to make it for an hour at a time instead of a minute at a time. Then it turned into making it a day at a time rather than just an hour. Then just now, I can make it a week at a time instead of just a day. Along with that renewed ability, came the daunting task of starting to take care of myself. Thank goodness for timely visits with my doctor and continuing a monthly visit with hospice grief counselor--they got my health back on track and that gave me the ability to re-focus. Thank goodness for my dog Bugs who really does bug me to death (good choice of name by a previous owner, since I adopted him from a shelter when he was 5 yrs old) but nuzzles me when he knows I'm really feeling sad, his unconditional love ever present. Thank goodness for my employer and friends who were my family when I had none. Thank goodness for my faith in God and knowing in my heart of hearts that He does want me to heal and continue my life-journey, that He gives me inner strength and vision. I feel His hand pat me on the back and a soft whisper say "good job my child".

The message here is this. Live life. Grasp it with both hands. If you are in fight, you dig waaaay down deep inside and you pull up the fighting spirit that is willing to scale tall mountains and swim oceans. If you are a caregiver or anybody that cares enough about someone that they come here looking for answers and hope-- may you find strength in us that "have been there" and are trying to help others that are coming in now. Sadly, sometimes when the fight is over, there are those of us left on the battlefield still standing. We are the walking wounded. It takes much courage, focus, vision, and sheer faith and determination to get back up on our feet and "go on". Knowing without a shadow of a doubt that one day we will see this child, sibling, spouse, parent, grandparent, friend, etc....again. So that is why we are all here, to keep eachother going, too keep striving for success stories and raising money and political awareness for our cause. One day I pray that all of the cancers will be treatable, maybe by genetic intervention, but treatable. That there would be more vaccines and bio-drugs. That cancer will become a thing of the past.

Take the time with your dad Michelle. Play cards, or chess, or listen to his favorite music together and let him proudly display his music trivia.....Or, go fishing together or whatever will bond you for the time left with many warm wonderful memories banked away in the heart, ready to pull out for down days. Don't ever give up hope. That is soooo very important. Hope is everything, but only if hand in hand with faith. Thank you for your thoughts about my loss and I thank God I found this harbour back in May 2005 when this all first hit ME like a ton of bricks for the first time. I was the new one.....I pray every day for those that are touched by this monster.

Take care of yourselves and stay strong.

Love, healing, hugs and prayers
Jan from So. Indiana

Dear Hep,

Thank you so much for replying to me. I am terribly sorry for the loss of your dad. I will take everything you said to heart.

My stepmother told me that she is putting me on the doctor's list so that I will be able to call. Is it usually the oncologist that we speak with?

Everyone on my father's side of the family is in complete denial about how serious this is. It scares me because my stepmother says, "Oh, after his treatments, he will just need to rest a little, then he will feel okay." I know that everyone handles the treatments differently but shouldn't she be aware of how sick he could get due to the treatments? Also, he is so thin that it scares me. He is about 5'10 or 11 and weighs about 156 pounds. He can't afford to lose any weight.

I hope to be able to spend quality time with my dad but right now all he is thinking about is death. I can't blame his as I would feel the same way. His brother tried to take him to the movies the other day and he wouldn't go.

Well, I will keep you all posted. Thank you again for all of your thoughts and taking the time to post to me. It truly means so much to speak to you. Take care of yourself,

Peace,

Michelle

Dear Jan,

You put it so beautifully. I plan to fight with everything I have but unfortunately, I don't know if my stepmother and father will. I pray that they will.

I'm so sad...sad for the little 8 year old girl who moved away from her father who lived in MD and moved to FL with her mom and brother. I'm sad for this little girl who didn't know how much it would hurt later on into adulthood that she wouldn't be close with her father. I'm so sad for my mom who blames herself for taking us to FL. I'm so terribly sad when I look at past photos when I was a child and closer to my father. The look on his face proves that he really did love me. I just don't think he knew how to show it after we left because too many years apart, he just didn't know my brother or I. I'm sad and regret so badly that I didn't have my father walk me down the aisle at my wedding...my brother did. My mom always said that if my father would have fought for our family, she would have gone back with him in a second...he just never fought. I'm just so damn angry that I didn't get to know him like a daughter should. I tried, I really did, but his new family was always there. I'm so angry that he was never a grandfather to my children. He had a second chance with them, but he didn't take it. He just isn't a fighter and this is what scares me with this fight with cancer.

I just feel so unbelievably sad for this man, who has worked sooo hard his entire life. He has had a hard life. He wanted to retire soon and go fishing and crabbing. I wanted him to have some years of peace and calm.

Thank you for listening,
Michelle

Hi Mishymae 3- I think the Dr's can tell by the cells if it is from smoking or not, I could be mistaken but this was what we were told. People who do not smoke get LC too. I hope your dad's treatments go well and it sounds to me like he has a great support system to make sure he's looked after. I'm sorry if my previous e-mail sounded negative, I didn't mean for it too as no two circumstances are alike-I was just reliving my caretaking time with my mom and what we went through as it was just her and myself. Every one is different and I will all pray your dad's treatments are successful-positivity is a great asset. Sometimes a Dr stick their necks out and speculate and they shouldn't, no one knows.

Dear ebrena,

Thank you for your post. Please don't apologize for your honest experience. I wanted to hear real experiences. I am hoping and praying for the best, of course, but I am a realist. I am so very sorry for the loss of your mother.
How difficult this must be.

Take care of yourself.

Peace,
Michelle

My dad too has IIIB. He was diagnosed in September 2006. I have not spoken to any of his dr's. I like you have been so focused on the prognosis. From everything I've read, no matter what it doesn't seem good does it? Even with treatment it seems that inevitably there is only a small percentage that make it five years? How CAN we focus on anything but that when it's smeared all over any information you read?

But, despite that, I hope you're able to spend as much time as possible with your dad.

My dad also isn't in the best health at 6'2" and about 130 pounds. He's skeletal thin. It's hard not knowing how much time we really have. I hope you're able to make what time you do have special with your dad...lots of prayers to your family.

Michelle,

Gosh... my heart breaks for you. I truly know what you are feeling. In your response to Jan, you stated how sad you feel over so many things. I TRULY understand. You need to make peace in your heart. People will tell you to make peace with your dad and "get to know him now". You do that if you feel it is right. But what is absolultely essential to YOUR life is that you make peace in your heart. I had "issues" with my dad's life too. He and my mom were together for 43 years, but my mom raised me. He never made an effort to know my husband. He judged people that he did not deserve to judge...but he was my dad. My husband once told me (he lost his dad 10 years prior to me loosing mine) that you only get 1 dad!!! Regardless of what happened in the past, you need to accept the fact that you were and are the best daughter you can be TODAY... not yesterday, or tomorrow. That little 8 year old girl should be looking at you with amazement and cherish the fact that you turned out to be the caring, sympathetic, realist that you are today. 2 months before my dad died, my mom actually uttered the words " I don't believe he even has cancer... maybe he only has the precepters to it" at that moment, I knew she was in denial. I had to be the "mean one" and say point blank "MOM-- DAD HAS CANCER... DAD HAS STAGE IIIB LUNG CANCER. HE IS NOT HEALTHY". It wasn't until then that she believed.
Please let go of the past. You can never change your dad. BELIEVE ME!!! I have tried. He is who he is, and whether or not you believe it, who he is made you who you are. Perhaps you get your "fight" from seeing that he did not.

Mishy- Like your dad, I am 55 years old. 18 months ago I was diagnosed with stage IV NSCLC. I have had radiation, surgery and now on my second line of chemotherapy.

I am living with cancer. However, I am a realist. I know that as time goes by I have become weaker. It is difficult to see your health deteriorate. I grieve the loss of my good health. I grieve the loss of an active lifestyle. I grieve viewing the pain expressed in the eyes of my loved ones.

Despite the dire statistics, I look forward to a new day... everyday. I live off of the energy of all the positive people that surround me. Many of those people you will find here on this healthboard. I'm extremely grateful for all that life has given me. There is a goodness to all that we experience. With this, you see things differently.

Peace, health and abundance... Tom

So nice seeing you on the posting board Tom! You make me see how my husband must feel since he is the one with the cancer and I am his caregiver. Nice to see you still enjoying life.
Thanks for your posting!
May you continue to stay strong and fight this terrible disease.
Kim

Tom,

Thank you very much for taking the time to reply to me. Although, I am very sorry to hear about your diagnosis. You sound like a very strong man. I will keep you in my thoughts and prayers.

Michelle

Ayre,

I am sorry to hear about your dad. We are now waiting to hear about a spot they saw in his lumbar area on the pet scan. They did an MRI on that area and now it is a matter of waiting. The doctor said it would then be a stage 4 so I don't know what they would do for treatment at that point. We are praying for the best. Please let me know how your dad is doing. Take care of yourself.

Peace,
Michelle

Dear Michelle and other IIIB message-posters,

I send you all my prayers and heartfelt wishes for strength and hope. My mom was also recently diagnosed with this type of lung cancer. She started coughing in Sept. and after 9 or 10 visits to the doctor (no relief from the cough, 4 different diagnosis: allerigies, bronchitis, acid reflux and COPD) she switched doctors and the next month consisted of test after test. A real roller coaster... pleural effusion (fluid on her right lung), was drained but not tested, the nurse called and said "it looks fine, no infection, no cancer". One xray showing nothing was taken back in October, another was taken in Feb and the doctor thought it showed something wrong with her esophagus, possibly an ulcer or errosion from acid reflux. Next it was a pulmonary function test and a barium test... they led to a ct scan, and finally a bronchoscopy, and an MRI to check her spine (it does not appear to be in her bones). After 6 months of seeking medical treatment for a nagging cough, we finally found out she has advanced stage lung cancer. First they thought non-small cell, then small cell, then back to non-small cell, most likely IIIB, inoperable and terminal. The local doctors were insensitive, had poor communication and appeared insulted when we said we would like all test results and info to take to Mayo Clinic in Rochester, MN. One doctor said "well if you are going there you don't need to talk to us". He also told us my mom most likely had 5 months to 1 year, at the most 2 years. What a depressing, frustrating, maddening experience. For the next week my mom lost her appetite and had little interest in anything. Then we went to Mayo last week to see a pulmonologist. WOW! Same diagnosis, completely different delivery.

Someone in this string of messages talked about how each patient is an individual, not a statistic. That was the exact same thing the Mayo Dr. said...very uplifting, yet honest and realistic. A doctor who knows the importance of treating the whole person, not just the disease. We go back on Monday to see an oncologist. My mom's tumor is blocking a bronchial tube in her right lung, which is 2/3 collapsed. It is also blocking her esphogus. It is in a very bad location, and radiation may not be an option, but we are hopeful. She smoked for 30 years but quit 23 years ago. She is a very healthy 78 year old. The only symptom is that nasty cough which her local doctors could do nothing about, she is allergic to codeine. Then the Mayo doctor suggested mixing another drug with the codeine to take away the nausea she would get. Amazing... she took it at bedtime along with a low dose sleeping pill and she has slept well the last three nights. Why didn't any other doctor think of that?

Michelle, I know how scary this time is... especially when you might be looking at stage four... keep reading and looking things up on the internet. There are many good books out there too... one uplifting one I just bought is called "there's no place like hope" by vickie gerard.

Don't be afraid to be a pushy advocate for your dad. I have been very persistent with nurses, doctors even the pathologist. We would not have gotten into see an oncologist at Mayo until April 17th if I hadn't pushed a little, now we have an appointment on April 2nd.

My mom came back from Mayo with a renewed sense of living... she is finally sleeping better, so she is also eating better and plans to get back to mall walking. Of course things will likely change when treatment starts, but our motto is "one day at a time". She has already said "There's nothing I can do to change this so I just have to make the most of things". We are not afraid to talk about it either. It's such an emotional roller coaster, with many unknowns at this time.

KEEP THE FAITH! Believe in the power of prayer and a positive attitude. Check out this power point, it is wonderful: http://www.InspiringThots.net/movie/limit-cancer.php

I will keep all of you in my prayers.
Ann Marie

My husband was diagnosed about a month ago with Stage IV NSCLC, inoperable because it has spread to his spine. He is 66 and smoked for 50 years. I must say our doctors and nurses have been incredibly supportive. I was appalled to read so many posts of doctors who were not. We've been given a lifespan of 1-2 years, realistically, but of course the doctors won't commit until they see how he will react to chemo. Unfortunately I am NOT one of those who can retreat into denial. In fact, I am a little gloomy since my husband only weighs 137 at 5'8" and was just hospitalized last week with pneumonia. My problem seems to be that my husband has mood swings from denial to total breakdowns. I don't really know how to handle that. I am trying to be so patient, upbeat but not "over the rainbow". I am going to have him try a hypnotherapist to help deal with his stress levels.

Your message got my attention. My husband is in the hospital now and has been for 8 days. He is running a low grade fever and can not eat at all. They think pneumonia but I am not sure. His xrays show nothing. He has night sweats. He finished radiation about 2weeks ago and has been going down hill every since. I have no idea what is going on..Any advice?

Thanks Michelle, My dad isn't doing too well in my opinion. He's now 115 lbs at 6'2". He is wasting away to nothing. He's now finished his first round of chemo and his first round of radiation. He just had a CT scan last week and we'll get the results May 2nd. Somehow...I just don't see if being a good appointment. How is your dad feeling? Hope everything is well with him. Take care.