Need some input........not sure where to post...

[Patkid]

You guys,

I want to raise some things with you..........please read and share your feelings or reactions.

I am leaving room for the possibility that I am in the throws of denial or that I am emotional to the point of irrationality........but I still want to ask this and I have come to feel safely enough in this group to take this risk.

Is it possible that Brian was mis - diagnosed?

Points:

He is/was not sickly

He was working 10 hour shifts at night

He had no pain

The naggy cough he had was attributed to Monopril - a med he was on for 4 years.

He had / has not lost any weight.

He had 2 instances of breathing "funny" in the last 6 months, but both times were after exertion and lifting and he describes them as more like he was "out of his breathing rythm" than experiencing shortness of breath.

He was able and still can walk for 20 uninterrupted minutes on the treadmill at 3 miles per hour.

Last fall we took many "laps" around the walking path with no sign of fatigue from Bri.

PCP and ONC both said that Brian's "presentation" did not match the lung x-ray, CT Scan, PET SCAN.

Onc said that he was "PUZZLED"; that the best diagnosis he could come up w/ was poorly differentiated LC. He said that the "stains" they did on the biopsied matter were inconsistent in many ways with the microscopic findings. He said that the tumor had some characteristics of sclc but that only showed on the staining that was done.

He repeated that he was puzzled.

Brian and I could see the Liver tumor on the CT Scan and on the PET Scan. It seemed at least as large as the Lung tumor (lung tumor is in upper left lung.........inoperable due to size (5cm) and proximity to arteries, heart and "nerves that control breathing"), but the liver was never biopsied.

ONC told us not to have Brian work

Onc told us to begin paper work for SS disability

Onc did not discuss stage or prognosis

Onc said Cisplatin and VP16 for 2 rounds/Scan and either continue or change chemo drugs

Brian tolerated chemo well.

After he got Protonix for heart burn and Lasix for bloating he came right around and ate well and only felt fatigued and lost his hair as symptoms of the chemo.

I repeat: Brian is NOT SICKLY

Brian states that he does not have the sense that he is really really sick.

Is a biopsy difinitive??? If the biopsy says LC does that mean LC?

They got a really good amount of matter in the ct assisted needle aspiration biopsy..............Onc left no room to think that he was unsure of LUNG CANCER --- Just what kind.

Brian really likes the ONC because he did not show any sign of treating Bri as "hopeless" He seemed very eager to get going and "go after" the cancer. Brian loves the cancer center (OSF ST ANTHONY center for Cancer Care in Rockford IL.) and the fact that it is a short drive from our home. He connected with the ONC right away.

I just can not believe that he has cancer.

........Thank you for taking the time to read this. I look forward to your input.

[kimblanchard]

Hi,

I'm sorry you are in the world of the uncertainty of lung cancer. What I can tell you is that other than having a layrngectomy for a previous cancer my father was the picture of health also prior to being diagnosed with the lung cancer. Working and thriving (just breathing through his neck instead of his mouth). He even mastered a special kind of speech so he wouldn't have to have an artificial talking device. Then they found the first spot on a follow up from the other cancer and from there things just snowballed. What we've learned in almost this one year journey of lung cancer is you may never be 100% certain and sometimes you have to let them make the best decision for them based on a doctor's input. I find that our family questions things much more than my father does. It took a couple of biopsies and finally a trip to Hopkins to diagnose the first spot and then they were never really able to tell if the second spot they found (after surgery and a clinical chemo trial) was cancer. Two unsuccessful biopsies later my father made the decision based on the opinion of all the docs at Hopkins that it was most likely cancer again and to treat it as such and be as aggressive as possible while he was still "strong and healthy."

You are right. They are perfectly healthy and then everything turns 180 once diagnosis and treatment begins. I don't know what else to tell you except that you are not alone. I have learned from others here that I need to step back sometimes and let my dad have some control over his decisions eventhough I may be unsatisfied or seeking more answers...........

Hang in there!

Tammy

[sharyn]

I have walked the path you are on.... Daddy also was in GREAT HEALTH when diagnosed, was diagnosed by accident with a routine chest xray... NO SYMPTOMS AT ALL..... the only symptom he had on chemo was loss of hair, no nausea, no vomiting, no fatigue NO NOTHING... he golfed and carried on life as normal for 3 1/2 years....(All the time saying, "Those doctors must be wrong!" But, he did have Lung Cancer, we were just very, very fortunate, and I thank God for this daily. Daddy did not show symptoms until approx. 6 mnths before he passed on... I don't think you should doubt the diagnosis, I think Brian is just one of the more fortunate ones .... Love, Sharon

[cindi o'h]

Hi Pat.

All I can say is "wow"..

I am sitting here in awe.

I can easily see why you would be questioning Bri's diagnosis of cancer.

At first, it is such a shock that no one can think straight.

After awhile, after you start to learn things about cancer, then there will be more questions.

First of all, I just want to say that most people who are diagnosed with a treatable lung cancer, have no symptoms. The cancer is usually found accidentally on an incidental chest xray. Occasionally, someone will have a persistent, ususual cough. Occasionally, there may be one who will cough up some blood. Sometimes, in later stages, particularly with sclc, there will be a pnuemonia that is the reason for a chest xray and the finding of lc. Most people present with no symtoms. At least that has been my understanding of the survivors on this board.

Secondly. That is where the "wow" comes in. I don't know too much about what you are talking about as far as the pathology is concerned. But, what I will say is that I would want a definitive answer about what kind of lc I had and exactly what stage it is. No guess work, please. If this pathologist does not know, if this onc. does not know, then absolutely I would want to find doctors who did know with as exact precision as possible. Why? So that my disease and stage could be treated with as much exactness as possible. Holy moly! I am sorry, but this doctor sounds too vague! This is not a crap shoot.

I don't know what you are talking about as far as stains go and all of that. I really don't. Do you have copies of the pathology report? I do know that staging was a huge process for me and I do trust that it was performed appropriately, thoughtfully, thoroughly and methodically. I did get copies of the surgeon's notes, pathology notes, biopsy notes, bone scan, PET scan, onc. radiaologist, onc., nurse practioner, radiologist...all of them. Surgeon, onc rad, onc. all agreed on the stage and treatment.

What you have said so far, makes me nervous. If it were me, based on the information that you have supplied here, I would RUN for a second opinion.

Sorry to be so blunt, but that is how I feel.

Love, Cindi

[Ry]

It was the same with us and if you read through the stories in the "My Story" forum you will find that many people feel great for a long time. With John, he had never been healthier in him life...sounds weird I know. He was speed walking, had quit smoking several years prior, and had lost a lot of weight. You could have knocked me over when he was diagnosed.

He had no symptoms until that day.

I don't know how a biopsy can be wrong, that's a question for the experts. I can relate to the craziness and the denial for sure. I have times where I think maybe it was all a mistake...we're way past the prognosis he was given. I don't know what to tell you except it is hard, gets harder, gets easier, you get the idea...it's a roller coaster ride. Good luck.

Rochelle

[stand4hope]

Dear Pat,

I would have to say that my husband was better-than-healthy, if there is such a thing. Physically, mentally and emotionally, my husband was a tower of strength. He could have whipped our 27-year-old 6 foot tall, 190 lb. son with one arm tied behind his back if he had to. He has always worked 50-60 hours a week, plus nonstop on weekends in our yard. A man of discipline and perfect health, other than sinus headaches, which he has had for a number of years. He didn't, and still doesn't, even have arthritis. He did have a basal cell carcinoma removed from his back several years ago, had a hernia operation probably 10 years ago, and had a nerve act up in his neck several years ago. Other than, I would guess that in the 37 years we have been married, he hasn't been off work more than 10 days for being sick. He was also a nonsmoker.

About 3 weeks before diagnosis, his sinus headache turned into a colossal headache that was not relieved with any medication. He also had lost 15 lbs. in about a month. To make a long story short, an MRI revealed 8 brain mets, and the next day a CT scan confirmed a 7 cm tumor in his left lung. He received decadron immediately for the headache and in less than 24 hours, the headache was gone - and 18 mos. later, after WBR and stereotactic radiosurgery, the headache has never returned. Nor have his sinus headaches, so it kind of makes me wonder, if thats what the sinus headaches really were all those years.

Anyway, in answer to your question, 18 months later, while he isn't quite where he used to be physically because of treatment, he almost is. He is not sickly, does not feel sick, and hates being asked how he feels because he says he feels good. He works 10 hours a day, 4 days a week, and sometimes 5. He is more tired now than he used to be after work, but that's because the treatments just drained a lot out of him.

He exercises every day, lifts weights, rides a 750 lb. motorcycle, plays with our dogs, takes me out to eat and sends me emails from work every day.

Now, if the past month or so, there have been a few, very minor changes, and we both know that things could go boom at any time, because we do know that "Yes, he does have lung cancer."

But, we have had more than 18 good months, and are planning on having another 18 months or many more ahead of us. We are, of course, prepared for the worst, but expect the best, and we try as hard as we can to just know that today is good, so tomorrow will probably be good, too.

I'm sorry this is so long, but you just hit on a subject that I have struggled with myself. We have been told that a lot depends on a person's performance rating at the time of diagnosis. My husband's, and it sounds like your husband's, performance rating was quite high. Their good health, strength and good attitudes are the best thing they have going for them.

I would tell that onc that told him to quit work and apply for SS disability to take his advice and . . . . . well, you know. There may come a time when he might need that, but if he wants to work and feels like working, why shouldn't he work?

Lots of love and prayers to you and Brian,

Peggy

[jcawork]

I do not have an answer for you, but do have a suggestion. My first needle biopsy said poorly differenciated NCLC w/ necrosis......

This was not good enough for my Doc so I had to do it again. It came back sclc. First biopsy was a poor sample.

Then I got worried at second dx so I called around and found out you can have your path slides sent anywhere you want for a second or 3rd opinion. I had 3. The hospital that did the biopsy, then I had it couriered to georgetown, then I had it couriered to Shady Grove Hospital.

All 3 came back the same dx. My insurance company was billed. I paid the courier fees.

You can pick them up and drive them, courier them or just ask whoever has them to send them to ????.

Good luck and sorry you are going through this.

Jen

[chloesmom]

I think you're having the same problems that I had when I was first diagnosed. I had just completed a nerve-wracking stress filled project at work that involved a lot of long hours, tension, and while no physical exertion was involved, believe me it was stressful.

I went for years without missing a day of work--up at 5 am every day for coffee and smokes, and then busy all day, whether it was a work day or off day. We have a big house and a big yard and I was taking care of a lot of the maintenance work all the time. I was helping my mom at her house on weekends, cleaning, lifting things, all day long. I also was playing golf and walking the course, all the while feeling great and keeping up with my friends.

I did have the smoker's cough, that's all though. I was never short of breath, worked out at the gym with treadmill, kickboxing, step aerobics, all that. I was in good shape and looked the picture of health.

I was back at work a little more than two weeks after surgery. Missed not a lot of work during chemo and looked fine. Two weeks after chemo ended I hosted 10 people for Thanksgiving dinner.

What I'm trying to say is I didn't and still don't look like someone who had cancer, but I've had it twice now. I understand your doubts, but with a tissue sample, they should be able to tell for sure. If you're not convinced, you could probably have the slides sent elsewhere for another opinion.

Cindy

[luvmydog2]

At the time of my dx I felt like I was in good health. It was February and temperatrure was averaging about 15 to 25 degrees outside. I worked outside clearing the walks and clearing the parking lots at the college where I worked. I would get hoarse which I felt was from the cold air. When I would go in for coffee about every hour or so, the hoarsness would disapear. I had only lost maybe 10 lbs in a long period. My co-workers nagged me to go to doctor. I kept telling them it was the cold air. My wife got the flu, so I decided to see the doctor at the same time. Well the rest is history....NSCLC (never given a stage)....radiation and chemo to shrink it and then left lung removed.

I can say, as well as most others here, there are no real advance symptoms of lung cancer.

If you are in doubt, get that 2nd opinion. Good Luck.

[Maryanne]

Hi Pat,

I am really sorry. I know these many of these posts are not very encouraging to you. But unfortunately, that is a fact that you could feel perfectly fine and have LC and not know it.

My husband, Joel was diagnoised just from a routine physical, and he just asked for a chest x-ray as he is a smoker. He was floored when the x-ray came back with a mass on his lung.

We really thought it was somekind of infection as he was feeling great. We even question the doctors results.

Pat, you seem to have some doctors who seem baffled, so maybe you should go for another opinion and they will be able to get the staging for

you.

Maybe someone on here who lives near Rockford Ill can help you with a doc. for a 2nd opinion.

Keep us posted.

I will be thinking of you and sending you hope and strength.

Maryanne

[Don M]

Hi Pat: I too was told I had lung cancer and I felt perfectly fine. Mine was early stage. My cancer was not finally staged or described until after surgery.

[berisa]

my dad was fine at being diagnosed. We got him check as he had sudded shortness of breath plus blood sputum. But he did exercise everyday at that time. But funny thing is, the cancer knocked him down when the cancer relapsed at his brain. No one will think he got cancer even after the first-line chemo finished. He looked perfectly fine during the first 9 months.

I think you can get more professional opinions which is to seek second or third opinions from other oncologists. I hope we can help.

[Snowflake]

No symptoms here, just lucky enough to be sick as a dog with pneumonia eight months after a chest x-ray for unexplained chest pains. Pneumonia x-ray showed a "cloud" that hadn't been there in the prior x-ray. More testing and I had a diagnosis of lung cancer. I didn't feel sick, beyond the pneumonia (which was not cancer related, my husband had it at the same time), but I had lung cancer...and after surgery, was re-staged to IIIa. Not "early stage". My doctor is pretty sure that I wouldn't have had cancer symptoms for some time after we caught it.

I would suggest a second or third opinion, though. Decisions made on treatment should be solid, not a guessing game.

I wish I could tell you that his story is different than so many of ours and of course he doesn't really have cancer, but truth is, it came as a surprise to many of us, too. I wish you luck, and peace.

Becky

[Justakid]

Pat-

The only thing that was wrong with me when I was initially dx was was I needed to diet.

I went through surgery, radiation, chemo and more chemo and was on the final leg believing that I was cured and within 4mths of treatment it's in both lungs.

I DON'T BELIEVE IT! I still stink it's something else. BUT the doctors say we have to provide it. The additional stains and testing I had done from my initial surgery did confirm (again) that it is lung cancer. We can't get any samples of the new stuff, it's in bad places. They would have to stop my breathing to get a piece of it and don't want to do it.

Have the pathology slides read by several people, have another bioipsy done if you want, I do understand your feeling though. PM me if you want to talk more!

[TAnn]

Pat,

Like so many others have said, you don't have to look or feel sickly to have lung cancer. That is why it is usually diagnosed at a late stage. I had a nagging cough and a pain in my chest, especially when I coughed or sneezed. I've never smoked, don't live w/a smoker and at the time of diagnosis I had just turned 41. My days started at 5:00am and ended at 11:00 pm between work, soccer practice, grocery store, dinner, well you know.

My husband finally INSISTED that I go to the doctor when he saw me fall to my knees in pain with a big sneeze one day. He said, "That's not normal!" So off I went, to the GP who kept telling me that she could refer me to a psychologist if I wanted, I was probably just stressed. After all I was "young" and in good health. After many more trips to the dr and finally insisting that she refer me to someone else, I was sent by a pulmonologist for a chest ct. That's where the tumor showed up, not in the 4 or 5 x-rays I had during the time I was seeing the GP. He thought for sure that I had TB, he tested me 3 times because I was "young and in good health" and a non-smoker. Thank goodness for my husband. I would probably just have given up and said, well the doctors think I'm ok, so I must be.

As far as staging, it is my understanding that any time the lung cancer mets outside of the lungs, ie: liver, brain, bones it is stage IV.

I agree with the others about getting a second opinion in the pathology. SCLC and NSCLC is treated differently.

It is an evil disease, but many of us are still winning!

TAnn

[alibass]

My husband had similar situation - no symptoms at all. None. He had a regular dematology appt. and he removed a cyst of his side that turned out was full of lung cancer. He is stage 4. It's in several locations, he's on chemo, he still looks great, still has his hair, and works every day - we and others are amazed.

I think that others have given good advice about getting another opinion on your slides. Your doc may even recommend someone if he is hesitant to stage you. Work with your doc if you like him, ask lots of questions, (call his office - don't just wait for next appointment if the questions need to be answered now), and realize that you are going to have to take control in order to get the information you need to make decisions you feel good about.

Also, get copies of reports - there should even be a report on the biopsy. Look up terms on ther internet that you don't understand, or call the doc. This made a big difference for us, and made us realize what Jim had and what we had to deal with.

You may want to ask your doc why he feels your husband should quit work and do SS disability. It may be cost, it may be the type of treatment he has in mind, or if may be your husband's work situation. I dunno - that just hit me strange, but there may be circumstances not in your post.

Ask questions. Ask a lot. If you still don't understand, ask again.

This cancer thing is a bear and you don't need to feel uncertain - you need support. Good luck and I'll be praying for you and your family.

[brm1949]

When I was dxed I had no symtoms, just a swollen lymph node in my upper neck. After my surgeries and chemo and radiation I was pretty much shot physically for a couple of years or so.

Now I feel pretty fit and am excercising and lifting wieghts. I feel that I'm in better shape now than I was before dx.

Thats the catch 22 with this disease. I would like to think that all is well now but as everyone here knows, its a beast and can rise up at any time. I would like to say to you that it would be great for Brian if it were misdiagnosed.

Enjoy every good moment you have with him now. These could be the best days of your life if you learn to live it one moment at a time. There are no garentees for any of us. Cancer or no cancer, we only have what we have now. Make the best of it and enjoy each other the best you can. Tim McGraw song Live Like You Were Dying says it well about his father Tug.