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Guest capasshl

Father-in-law just diagnosed with lung cancer

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Guest capasshl

Hi All,

My father-in-law is 63 years old and has just been diagnosed with lung cancer based on a chest X-ray, spiral CT scan of lungs, and PET scan. He had pneumonia in January and the diagnostic X-ray for pneumonia did not show a lung mass, he did not have a follow-up X-ray. He was having chest pain (he thought was gas) that radiated to the shoulder so he had a chest X-ray (7/9/04) that showed a mass in his right lung. He had a CT scan (7/15/04) that showed a mass in his right lung and a smaller mass in his left lung-the CT also showed emphysema, which the pulmnologist said probably precludes surgery. He had a bronchoscopy done on Friday 7/23, at the bronchoscopy the pulmnologist said that the tumor was 3X bigger than it looked on the CT scan and was in the middle and lower lobes of his right lung and that surgery was definitely out. His pulmonologist is currently on vacation, we got the pathology report yesterday that said all 10 samples were negative for cancer??!! We got the PET scan results today and the tumor lights up as well as a small tumor in the left lung, some lymph nodes, and a spot on his scapula??!!

We have an appointment with a medical oncologist tomorrow. My first question is, are there any questions that anyone would have asked at the beginning of their diagnosis or any tests they wish they had had earlier. Also, is there anyone who had a negative biopsy, but a positive PET scan? I am writing up a list of questions for the Med Onc and would like suggestions.

My father-in-law also has no health insurance. The hospital where he goes does have charity care, which pays 100% of everything done at the hospital, including radiation. I am worried that we will run into a problem with medicine. He was in the Navy years ago and am wondering if anyone has any experience with Veteran's benefits.

Also, my husband is taking all of this VERY, VERY hard. He has hardly smiled in the past 2 weeks and is convinced his Dad is going to die any day. I am trying my best to cheer him up, but he is a biostatistician who works on cancer trials and he looked up all of the statistics and knows that stage IV lung cancer has a 2% 5-year survival rate. I would love to hear some success stories to pass on to him. He lost his mom when he was 18 (about 12 years ago) and relies very heavily on his Dad for advice on everything and is feeling bitter about having to lose his Dad so soon and having no parents. I know we have a very tough road ahead of us and I guess I'm just looking for advice from people who have been there, done that and can maybe keep us from making mistakes.

Thanks for reading through this long email.

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Veterans definitely have a medications program, so that should be looked into. Your husband has the curse of knowing too much and expecting the worst. My daughter, even though she is a vet and not a people doctor, is the same way. Statistics are just number averages, and for cancer are based on older data. Believe and hope that your FIL will be in the percentage who survive.

My wife was given 9 months at Stage IV and she is now almost 22 months from diagnosis and doing fine. She is limited in what she can do because of the cancer and the medications,but she goes on. I believe attitude is very key. If your FIL believes he can survive and all of you act in that mode, I think his chances are better.

Good luck. Don

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Hi

Welcome to the roller coaster ride from he$$. You are in good company with a warm bunch of very caring, sharing people.

First, your husband should remind himself what he does know. That for statistics to be reported on they have to be finalized, written up, and published, so they are usually more than 5 years off from the here and now.

Second, they have really good drugs coming down the pipelines, and new ones all the time. Even a few years can make a big difference.

Third, they don't even know it is cancer. Could be tb, aspergillosis, or any one of a number of things. What did it LOOK like?

Third, let a surgeon tell you after your dad has a pulmonary function test if he can afford to lose two lobes of lung. I had 72% going in, lost half of left lung, and had 45 % six months later (%lung function).

Find doctors who can help your FIL look ahead with some optimism, not doomsayers. There ARE good chemo/radiation protocols, and there are doctors who will work with you to keep you alive and fighting the da^n beast. You just have to find them.

And lastly, miracles happen every day. Ask around, see if they don't.

I know I am one. I thank God for every new day.

Prayers for your FIL, your husband, and yourself, dear. Do not be so discouraged. There are also good teaching hospitals, or places to try clinical trials. I wish you all well. Keep close and let us know how else we may help.

XOXOXOXOXOX

Prayers always,

MaryAnn

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Hi Cap,

Sorry you have to be here, but glad you found this website. As you become more familiar with this site you will see there are MANY stage IV survivors. The statistics are just that, statistics based on a handful of people. You might want to share this website with your hubby and let him read the stories from many on here. As far as VA insurance, you might want to ask Dean Carl about that insurance. He lives in the San Diego, CA area and he goes to the VA because he has no insurance. He is a great guy and will help you quite a lot. He is very knowledgable. We also have an insurance category on this site, you may want to look in there for information. Hang in there and stay strong and visit here often. You will get a lot of answers here and meet the nicest, caring and supportive people you could ever want to meet. Keep the faith and I am praying for your FIL and your family. Please come here often and keep us posted. We are here for you...

God Bless,

Karen

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Hi, Iwas diagnosed in April 03.I too have no medical insurance,(I had just changed jobs)I have had all my care done at the VA Medical Center in Pgh. Pa.The Va does have numerous programs available.I am fortunate in that I am a disabled war vet.It has cost me almost nothing,however I am also locked in to what they say and want to do.(no 2nd opinions)They also have many programs with different deductibles attached.You should get him signed up in the system ASAP if you decide to use the VA.(it takes a few weeks to get signed in).Push and shove (all things considered) I have had very good care.The surgeons and oncs and uncs are all top med. people from Presbyterian Hosp. in Pgh.(one of the best in the country).I believe Dean Carl has also had good experiance in Ca. if my memory serves me correctly.

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Hi there and WELCOME.

Listen very carefully to what the others above me have said and print this thread for your husband. Mary Ann and others are ABSOLUTELY RIGHT. Any statistics you are looking at called "2004" are based on studies they started on people 5 years ago - How else could they have a 5-year study? In the last 5 years, incredible and magnificent drugs have hit the market and there are many more in the pipeline. Iressa (a pill) which you will read about a lot on here is only about one year on the market and there are many here who are STABLE because of that drug. Another one that I am very familiar with is Gemzar, which is only about 2 years on the market. My husband works for the pharmaceutical company that researched and marketed that drug, and it has extended the lives of many stage iv lc patients - my husband being one of them.

When my husband was diagnosed, he had a 7 cm. lung tumor and 8 - that's EIGHT brain mets, and 4 of them were big enough to cause a mighy big headache. His prognosis according to the statistics would have been about 4-6 mos. Next week, he will celebrate one year of surviving. Yes, he has had some progression of the disease, and yes, the overall diagnosis of stage iv is not something any of us want to hear, and even though it cannot be cured (NOT YET), it is definitely treatable. But he is feeling pretty darn good - he's working 4 days a week/10 hours a day, riding his motorcycle, doing yard work and getting along just fine. Endurance is the toughest for him. He gets tired a lot quicker than he used to, but at our last onc visit, he told the onc he felt better than he has since this all started.

Please see if you can get your husband to join the board. I can't get mine to join, but maybe you can get yours to. You might warn him that it isn't all good news here, though. We have several very special friends, we call family, who are probably not going to be with us much longer and we are all broken-hearted, but at the same time, just wait until he sees all the "stables", NED (No Evidence of Disease), people taking trips, fishing, golfing, teaching, working.

I can't believe I wrote this much - I got carried away. Anyway, you are in the right place and see if you can get hubby and his dad to sign up.

Please keep us posted.

God bless you,

Peggy

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Hi

Sorry to hear about your father in law's diagnosis but glad you found us.

I can understand how your husband feels regarding working with the statistics. I was working in a Cancer Registry as Project Co-ordinator on a Cancer Staging Project when Mum was diagnosed and all those pesky tables and graphs of absymal survival statistics were there facing me in the face every, single day. It was horrible and I spend many times reduced to tears at my desk looking over this bleak information. I didn't know how to feel confident that my Mum would be OK when faced with these statistic, BUT.......my Mum disproved much of these statistics as she is a Stage IV and is doing extremely well, symptom free and otherwise healthy one whole year later. So I say blah to the statistics. Don't read them, but if you do, ignore them. Your father in law is a unique person and not a statistic.

I don't know if there are many mistakes to be made on this journey. Everyone's experience is going to be unique and different and it is your own journey (although one we'd rather not have). The rollercoaster ride does get easier with time as you adjust to this "new normal" way of being. It's certainly not what any of would have wished for but it does get easier.

Wishing you and your family well

Jana

xxx

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Many words for you...

Ask DeanCarl about VA "stuff" - or Frank. When the VA is good, it's very good, but there IS a lot of paperwork, etc. that can get lost when not tracked (my ex-FIL went through VA for some "issues" a while back). Follow up on ALL paperwork, make copies of everything you send in, keep track of who you talk to on the phone, when you talked to them and a general note on what was discussed - a small notebook will make a good journal, keep organized so you know what HAS been sent (and how many times).

Hubby - he's a man. He needs to deal with it. Men are different then women, they don't talk everything out with friends over lunch. Men tend to hold it all in. Let him work through it in his mind, but DON'T let him write his father off as dead. That is the cardinal rule, no matter WHAT, there is ALWAYS Hope. Try counseling (professional), talk to your family's doctor about better living through chemistry (you'll see that a lot, I think there are many of us with "Band-Aids" on the night stand for those nights the voices won't stop), have him spend time with his father (but enforce that cardinal rule).

DON'T give up your optimisim. Your FIL needs that, if he can't get it from his son right now, step up to the plate.

Fay A. or John will probably have info on what else can make a PET scan light up falsely. I'm sure I've read it, but my brain has been melting pretty steadily and my recall is shot.

Breathe....long, deep breaths...relax...one step at a time, one day at a time.

Read through this post: http://lchelp.com/community/viewtopic.php?t=7294

I'm sorry you had reason to find us, but glad you did.

Take care,

Becky

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Okay, brain fart...(big surprise lately LOL)...

Here's what (I'm sure) was expected of ME when I replied:

Statistics are outdated. Same numbers have been stated for years, I believe my oncologist said the five year study that everyone refers to took place in the early 1990's... That's a decade of medical breakthroughs that were not available for lung cancer patients then that are now... Ten years - that can be a long time on a research calendar.

AS FOR THE MORTALITY NUMBERS: They're skewed. No, really. Many of us here have lung cancer. Were all the people of this board on an island that was hit with a nuclear bomb, the deaths of the lung cancer patients would be attributed to lung cancer. We would be dead, but it would have had NOTHING to do with our lung cancer...

An end date is established when the testing begins. Anyone that dies before that date of ANYTHING (heart attacks, strokes, beer trucks) is counted in the cancer mortality....hmm, that just doesn't seem right...(this was also told to me by my oncologist).

SO, throw those darn statistics right out the window! They are VERY limiting, and they are WRONG! Hey, no PollyAnna here, the odds ARE stacked against us, but not THAT much! Miracles are happening here daily, new breakthroughs, testing, you name it. People are living past their doctors' "Use By" date. Ain't it grand?

Statistics are numbers, WE are people. To heck with the numbers!

(and now, I'm off to bed)

Becky

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Definately have your FIL look into the VA. It's not the greatest in the world in some cases but it's been a BIG help for me on my medications. Getting in was easy. I just went to the VA hospital here in San Diego, went to the membership office and in less than 45 minutes had my VA card and was headed for the urgent care. Didn't even need my discharge papers from the Navy or anything else. They looked all that up off my social security card.

The "up" side of the VA: They have all the latest goodies (test equipment, computerized records ect.) and, at least here in San Diego, are affiliated with one of the best cancer centers in the U.S.. Out of the 5 doctors I delt with when I started out only one was a jerk and I was able to handle him with little or no problem. Because they don't have to work with other insurance providers they can sometimes do things that other providers can't. My scooter is a perfect example. No other insurance would pay for a mobility device for someone concidered to have a "terminal" illness (which mine is since I chose not to have chemo or radiation and my tumor is inoperable). But the VA was able (with a little push from my primary doctor) to bend the rules a bit and get me my scooter. And, like I said, they are very good about medications. I pay a 7 dollar co-charge per perscription and have my meds mailed to me so I don't have to go in all the time.

The "down" side: If you use the VA system ... be prepaired to WAIT. For EVERYTHING. Be it an appointment with a doctor, trying to get someone on the phone, whatever ... you are going to need an extra dose of patience. When you first "sign up" for the VA you are assigned a primary doctor. This can be a bit of a "crap shoot" as to whether or not you get a good on. I was lucky and got a GREAT primary doc.

So much for the VA stuff.

As far as you husband goes. Seems to me he knows a lot about stats and stuff and not enough about his father. There are a ton of folks right here on this board are alive and well LONG past any perdictions the "stats" have given them. Heck .... I'VE alread blown past the low end of those very same stats he's reading and I'm getting, by my own choice, no treatment at all!!!! 2% survival rate for 5 years? Well, that tells ME that SOMEBODY has to be part of that 2%!!! And he should know, concidering what he does for living, that those stats are about 5 years out of date.

Finally a thought: Your FIL is alive TODAY. Seems to me THAT is the important thing.

Dean

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Wow you asked for advice and did you get it. Now I will add my two cents worth. This comes from someone who is a loser to lung cancer and knows the reason why.

No one wants this ride :!: Absolutely nobody deserves lung cancer or any cancer for that matter. Sh** happens :!: Now having said that I have some things that you need to point out to your husband.

As Dean said his dad is alive today. He can and probably will be alive for months or even years longer. I say that but have to qualify it with a big IF. IF he is not treated like someone who is dying. If he can keep hope and not be continuously beaten down by people telling him that he is dying. that he is going to die or that there is no HOPE :!:

I saw what hope could do with my Johnny. I saw what love and faith could do but I also saw what taking that hope away from him did. It destroyed his hope and eventually took his life. Not because he gave up and didn't want to live or fight to live. That happened to him because he was constantly being reminded that he had lung cancer and it was terminal no matter how well he felt or how well he was progressing. It wasn't the cancer that killed him. It was having his hope taken away from him.

As for those statistics they are differernt than the ones I have seen. I saw statistics that say 14% survival for five years and I know that even those are wrong dispite what happened to my Johnny. Look at it like this 14% means one in every one hundred will survive five years (even encluding snowflakes beer truck). That means seven out of every 50 or 3 out of every 25 or at least 1 in 10. It looks a little better that way if you want to look at statistics. Like someone else said no matter what the % someone has to be in that good percentange. Why not your father in law?

Try to get your husband to come here. He will learn a lot here from people who know and understand his fears. Believe me no matter how frightened he is there are those here who have been there. No matter how frightened he is it can not even begin to compare with what his dad is feeling. His dad needs love and support and above all hope. Those are the tools that fight the beast. Drugs are just that drugs when given without the other things that make fighting worthwhile. It is time that your husband learns that. When he does he will go a long way toward helping his dad become a surviver and ridding himself of a lot of the anxiety that has found such a perfect climate to grow.

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Hello and Welcome,

I think the others have said it best -- pay not attention to those statistics!

There may not be a 'cure' yet for Stage IV, but each treatment is better than the last and each treatment gives you the chance to make it through to the next new treatment.....and one of these days -- the next new treatment will provide the cure!

I wanted to mention that we are neighbors, of sorts -- I live in Mount Laurel. If you, your husband or your father are looking for any sort of "live" support group" at any time, feel free to PM me for information, or just to talk.

This is a tough roller coaster ride, sometimes it takes all the support you can get!

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I don't really have any more substantive than all the other replies to add to this but I just want to urge you to have your FIL go right away to the VA -- my brother, who died of kidney/lung/liver/who knows what else because it metastized all over BEFORE it was detected cancer, went to the VA here in Connecticut and got wonderful treatment even if it was all too late -- and he did all his medications through there with absolutely no trouble whatsoever. So don't wait.

And I can second what the others are saying about statistics. Get your husband, difficult though it may be, talk it out with someone else, log onto this board, talk it through with a good oncologist. Even though the prognosis may not be what you want, it is probably better than he thinks, and there is so much promise in the pipeline. My husband was only diagnosed in April, and already there have been changes in treatment, options, etc., etc., since then, all going in the positive direction.

Keep on tuning in yourself to the board; it will help you keep things in perspective.

Ellen

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Cap

I can only say that Jesus is still in the healing and miracle mode. Please tell you husband. I have first hand knowledge of these facts. Had 4th stage LC, and I am now cancer free. Jesus word is full of healing scriptures grab ahold of them and don't let go.

Statistics don't mean anything to the Lord.

Praying for your husband and for your father in law.

In Jesus name,

Love Pip

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Guest capasshl

This is capasshl's husband.

I want to thank all of you for your kind words and advice. I believe, however, that my wife has embellished a bit on how I've reacted to this. It's true that I've taken this very hard and smiles have been few and far between these past couple weeks. However, this is in the presence of my wife; when with my father, through every doctor's visit, scan, lunch, dinner, card game, and talk, I've been very positive. I do believe he will beat the odds and live several years, but the fact is that when he does this he will be beating the odds. Stage IV lung cancer is a very deadly disease, and having my father diagnosed with this is very scary, regardless of what I do for a living. I looked up published studies because I wanted to know exactly what we were dealing with. Every bit of knowledge gives you a better chance of beating it. Anyone who's gone through this kind of traumatic experience knows that everyone goes through cycles; my first cycle happened to be worst-case-scenario-my-father-is-going-to-die. I have passed through this and now am ready to begin the fight.

We still have as yet unconfirmed histology, so we have to get more tissue (CT-guided needle biopsy). We saw a lung specialist on friday, who is fairly certain that this is NSCLC, however, based on location. His suggestion was weekly cisplatin/docetaxel (weeks 1,2,3 every 4 weeks) though more discussion will follow after we have confirmed pathology. Thoughts?

As far as you husband goes. Seems to me he knows a lot about stats and stuff and not enough about his father.

How dare you presume to know about the relationship between my father and myself? Seems to me you know too little about the actual situation and too much about condescension.

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I have very few answers except that:

1. statistics are based on old cases and are MEANINGLESS. Ignore them. There are many stage IV survivors past 5 years.

2. Although rare, not everything that lights up on Pet scan is malignant.

I think you should ask all questions you possibly can to your onc Write them out ahead of time. Take all the time you need.

Good luck.

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Hi Capasshl,

Welcome and sorry to hear about you’re FIL. Below are some websites to help you with research. Learn as much as you can. Take it one step and one day at a time. Stay positive and focused. For everyone involved it is an overwhelming feeling and a lot to take in and your FIL/you/husbands feelings are understandable. I’m at Stage (see my signature) IV and plan on being here for a very long time. There are options out there and treatments available. As far as stats go that is based on groups of people and not on individuals. There are members here who were told they only have a certain time left and have gone beyond that. Focus on living not dying. Also might want to have your FIL join a support group for lung cancer down the road. It’s a good place to find out how other people are dealing and coping. PM me if you (FIL or husband) would like to talk on the phone. Hope this helps. My thoughts and prayers are with your FIL, you and your husband. Peace, take care and God Bless.

Rich

[The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

http://www.ncbi.nlm.nih.gov/entrez/quer ... h&DB=books (NCBI / BookShelf)

http://www.lifeclinic.com/focus/nutrition/nutrition.asp (Nutrition Facts and Information Center)

http://www.about-nsclc.com/content/patient/nsclc (Iressa)

http://www.about-nsclc.com/content/prof/about (Iressa)

http://www.findcancerexperts.com (Find Cancer Experts)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Making Decisions About Cancer Treatment)

http://www.chemocare.com (ChemoCare)

http://www.curetoday.com/currentissue/d ... index.html (Toolbox: Resources You Can Use)

http://www.cancerindex.org/clinks8h.htm (Resources for Caregivers)

http://www.google.com/search?hl=en&ie=U ... sa&spell=1 (Medicaid)

http://www.thehealthinsurance.com/medicaid.htm (Medicaid)

http://www.thebeehive.org/health/contests/medicaid.asp (Medicaid)

http://www.lungcancerfyi.com/lung_cancer_faq.html ((Lung Cancer - Frequently Asked Questions)

http://www.lungcanceronline.org/treatme ... osurg.html (Surgery - General Information & What to Expect)

http://www.lungcancerfyi.com/lung_cancer_glossary.html (Lung Cancer Glossary)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Receive the PLWC Bulletin)

http://www.usnews.com/usnews/health/hos ... p_home.htm (Directory Of American Hospitals)

http://www.lungcanceronline.org/tests/index.html (Lung Cancer Online / Test And Procedures)

http://www.vh.org/adult/patient/cancerc ... index.html (Understanding Blood Tests / A Guide for Patients with Cancer)

http://www.cancer.gov/cancerinfo/pdq/tr ... ng/patient (SCLC)

http://www.meds.com/pdq/smallcell_pat.html (Medicine OnLine / SCLG)

http://health.allrefer.com/health/prima ... -info.html (Diseases And Conditions / SCLC)

http://www.hospicefoundation.org (Hospice Foundation Of America)

http://www.hospiceweb.com (Hospice Web)

http://www.hospice-america.org/consumer.html (Hospice Association Of America)

http://www.hospicenet.org (Hospice Net)

http://www.plwc.org/plwc/MainConstructo ... 151,00.asp (PLWC Feature: Talking to Someone With Cancer)

http://www.zanesvilletimesrecorder.com/ ... 87526.html (3-year-old keeps her smile in battle with rare cancer)

http://www.rfalung.com (Radio Frequency Ablation Of Lung Cancer)

http://www.lungcancercoalition.org (Global Lung Cancer Coalition)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources)

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

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Believe me, everyone knows how unbearably stressful this process is, whether beginning stages or later on. I don't think anyone of us is in a position to point a finger or criticise someone's reactions to this dreadful diagnosis. I know I react inappropriately at times to my husband's moods, and he admits he does too. It's a terrible disease and it doesn't always bring out the best in us.

I'm glad you're getting good advice. I have no idea about the proposed therapy, but I'm sure others will. All I can say is that you have to hang together and forgive each other for the inevitable lapses that will occur -- and they will -- as you search for answers and for the best possible solution for a devastating problem. Be kind to each other --and to those of us who are trying to respond as best as we can as well.

Ellen

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Hello Cap & Husband,

Boy, when you ask a few questions here, you get answers! But that is what this place is about and add to that more caring and compassion than you will encounter in any other place. Maybe sometimes our responses step on a few toes, but understand that they come from the heart and are from those who have spent a considerable amount of time in this battle and have had enough experience with timetables and "quality of life" to get a bit riled up when the issue of statistics comes up. This place is not about judgment (goodness knows we get enough of that from the outside world), it's about getting us all through this in the best way possible.

Welcome to the battle - we're all in this one together.

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I have very few answers except that:

1. statistics are based on old cases and are MEANINGLESS. Ignore them. There are many stage IV survivors past 5 years.

2. Although rare, not everything that lights up on Pet scan is malignant.

I think you should ask all questions you possibly can to your onc Write them out ahead of time. Take all the time you need.

Good luck.

I have one to add -- if something doesn't light up on PET scan, it is probably not involved!

When they first found a tumor and before we knew what it was we were dealing with, a CT scan showed that I had enlarged adrenal glands. Of course, that was a concern, but the Pulmonologist felt that it was related to my other symptoms, and probably not something to worry about.

Sure enough, on the first PET scan, there was NO activity whatsoever around my adrenal glands. However, the Oncologist kept insisting they were involved, and was hinting about advanced SCLC, even though ALL clinical information said otherwise. I believe that from the start, he didn't plan on Radiation Therapy because of his "hunch," until I talked again to the Pulmonologist and my Internist and they both talked to him.

By the time I saw the Radiation Oncologist for the first time, I'd had another round of scans, and sure enough -- no involvement around the adrenal glands at all -- none. Nada. Zilch. Still, the Oncologist will only concede that the other 3 docs disagree with him -- not that my adrenal glands aren't involved. The Oncologist hasn't even verbally acknowledged to me that I have limited stage disease, even though all the tests, clinical data, and the other 3 docs (including the Radiologist who interpreted all the scans I've had) show that my adrenal glands are not involved.

Bottom line -- keep asking, and then keep asking some more, and then insist if you have to that your treatment team act as a TEAM and communicate. From now on, I will not have anything done, especially not something invasive, until I have agreement by all 4 docs, and the recommendation of the Pulmonologist who literally saved my life Memorial Day weekend.

I wish you and your father the best -- it's what he deserves, and it sometimes means you have to fight the "establishment" in order to get to the truth.

Dianne

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Mr. Capasshl,

Regarding this:

As far as you husband goes. Seems to me he knows a lot about stats and stuff and not enough about his father.

How dare you presume to know about the relationship between my father and myself? Seems to me you know too little about the actual situation and too much about condescension.

I'm pretty sure THIS is what my dear, understanding friend, Dean was replying to:

Also, my husband is taking all of this VERY, VERY hard. He has hardly smiled in the past 2 weeks and is convinced his Dad is going to die any day. I am trying my best to cheer him up, but he is a biostatistician who works on cancer trials and he looked up all of the statistics and knows that stage IV lung cancer has a 2% 5-year survival rate. I would love to hear some success stories to pass on to him. He lost his mom when he was 18 (about 12 years ago) and relies very heavily on his Dad for advice on everything and is feeling bitter about having to lose his Dad so soon and having no parents. I know we have a very tough road ahead of us and I guess I'm just looking for advice from people who have been there, done that and can maybe keep us from making mistakes.

This plea for help seems colored toward your taking the statistics to heart and giving it up as "lost" before the battle has even begun. Please take a minute to read back over it...

And then, read Dean's profile. Read through his posts...because you don't know him, either. Your actions will weigh in your father's decisions, but realize, the decisions to be made are his to make.

This battle is taking place in a human body, not a petri dish. It is NOT a controlled experiment, and mental attitude DOES play a part in cancer survival.

Your father needs your support now, and you NEED to support him. Don't let your future be colored with "what ifs", take time to take care of yourself and work through your feelings (yes, it IS a cycle) and give him the support he has always given you.

Please, come often for support. Many here have walked in your shoes, many are walking in the shoes your father has found himself in. Insight is valuable to those of us on both sides of the fence. There IS Hope, it's alive and well on this board.

Take care,

Becky

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