New Here, New Diagnosis Stage IV Non Small Cell

[rosie1]

Hello group. Yesterday my dad (actually my stepdad but he has been married to my mom for over 20 years and I love him like my dad) was diagnosed w/ stage IV. They had done a Bronchoscopy on Monday and ran into a mass in the upper lobe of the Rt lung. Yesterday they did surgery hoping to remove that lobe but found that it had spread to the lower lobes where they found several spots as well so they did not remove the lobe. They said the left lung was still clear. The doctor came out and said that it was stage IV with a prognosis of approx 6 months.

I do not believe that he is going to undergo any chemo. The doctor told my mom that it would only prolong his life by 3 months at the most but would cause him to be more miserable. Several in the family thinks he needs a second opinion and some options laid out on the table. They want him to go to MD Anderson in Houston. I agree. He had seen my grandfather go through this who had fought a valient battle and had tried many different treatment regiments including some expermental treatments.

Dad had appeared for several months now to not look well. We have pleaded with him to go to the doctor. last week he finally did and the doctor put him in the hospital for pneumonia after taking a chest xray. He had been on IV antibiotics a couple of days w/out any improvement and that is when they did a CT then the Bronchoscopy.

I hope he has not given up. I have read many stories of those who have been diagnosed w/ stage IV and given 3 month, 6 months, etc and two years later are still posting on the boards. I pray that he has the will to fight and not just take 1 doctor's poor prognosis as gospel.

Any comments, advice or suggestions?

[Ry]

First, welcome.

Yes, get a second opinion. We have many Stage 4 members that are doing just fine. He needs a doctor willing to fight for him. Keep us posted on how things go.

[Don M]

Hi Rosie: I am sorry to hear about yoour dad. You can be sure that everyone in this group will advise you to get your dad to seek a second opinion. It is not clear from your post that he actually talked to an oncologist. I have heard tht MD Anderson is a good cancer center. There are many stage 4 survivors who have been around for 4 years and longer. I am an early stage survivor. If I were a late stage survivor, I would definitely take the steps to keep on surviving for years to come.

Don M

[kimblanchard]

Yes by all mans GET a second opinion. There are numerous people on this board who have out lived their prognosis by quite awhile. I was given one year 19 months ago. I am still working full time and really enjoying life.

We are not statistics and each person has a chance of survival....Every form of cancer and every stage has survivors.

Do not give up.....FIGHT, pray and think positive!!!

jim

[betplace]

I just wanted to welcome you and thank you for joining our board. I am sending prayers that you make the decision to get a 2nd and even a third opinion. Don't let the apathy of some of the medical profession close down the will to fight. There is much that can be done. Chemo does make you miserable, but it is usually not intolerable , plus you can always stop if it causes too much, but you will have at least tried!

Blessings

Betty

[Don Wood]

Your dad definitely needs a second opinion. He was given a statistical answer on prognosis, not an individual one. Everyone is different. My wife is Stage IV, NSCLC, and was given 9 months. She is now 2 1/2 years out and still fighting the beast. She has had chemo and radiation, and she has had periods of non-sickness, which makes it all worth the treatments. She is still functional. Her oncologist is very on top of the latest and very aggressive in his approach. That is what we like. My hope is that you will hang onto the hope. Don

[Tami]

I guess one of my questions would be why the stage IV diagnosis? does he have mets else where? It sounds as though it is just confined to the one lung? I thought that a stage IV indicated involvement with mets, nodes etc.

Regardless I would run (not walk) for another consultation. I learned the very hard way that Cancer Centers (other hospitals that specialize in treatments) will try new treatments and work with you. My surgeon gave me a stage IV diagnosis, make your final arrangments speech and told me my tumor was inoperable.. he tried surgery TWICE to remove it!! And it was inoperable for HIM... but it wasn't for another surgeon, The one I ended up with on my 2nd opinion. Plus I don't like the sound of anyone throwing these statisics around. 6 months? How does he know how much time he has?? Treatment would only make him miserable? How does he know that? some people here on the board breeze through chemo, radiation etc. So many of us here are defying the so called "statisics" please look for another opinion or even a third...

Keep us posted. We are here to help. Take care.

[CharlieD]

Rosie - I'm with Tami. Run, run, run to MD Anderson for a second opinion and treatment. You'll get the straight talk from the Well Known Cancers and MD Anderson has a fine reputation. Go, go , go and I'd be surprised if you got the same kind of answer from them. I'm a one l year Stage IV survivor and going strong. Don't give up!!!! God Bless.

CharlieD

[Maryanne]

Rosey, never give up hope. You must get a 2nd or even a third opionion.

Please read Kasey's story under my story. Talk about a miracle.

Thinking or you and your stepdad, a praying for better more positive results.

Maryanne

[lilyjohn]

I don't understand. If it is just in the one lung why didn't he just remove the whole lung?

Stage 1V means it has spread somewhere. Did they tell you it has spread? Doesn't sound like much of a doctor to me. Too eager to just give up. I would think about Cancer Treatment Centers of America. They have a very good reputation.

[Calintay]

Yes get a second opionion. There are many stage IV survivors.

[karenl]

Hi

Welcome, and I am sorry to hear about your Dad's diagnosis.

I would try and find out a bit more info about his diagnosis if you can. As some of the others have mentioned, stage IV means spread to other organs or bone. If your Dad's cancer is confined to the one lung, that doesn't sound like stage IV to me.

Also, I support getting a second opinion regarding treatment. My Mum was diagnosed with stage IV, with spread to lymph and bone in July 2003. She was also advised not to seek treatment as it would not greatly improve her survival (9-12 months), and would just ruin her quality of life. Well, Mum has been fighting this for almost 2 years, and had very little trouble with chemotherapy. As Betty said, if your Dad finds the side-effects of treatment intolerable, he can stop anytime!

Please get another opinion, and remember, there is much to feel hopeful about!

Karen

[rosie1]

They have not determined if it had spread to any other organs or even in lymph nodes just that the upper lobe of the rt lung had been completely taken over and that it has attached itself to a rib (on the rib not in the rib) and there are spots in the lower lobes of the rt lung. Left lung appears clear at this point.

The doctors say that it has met. because it has gone to the lower lobe.

He was moved out of ICU yesterday evening.

I will keep you posted.

[Don Wood]

If the tumor is attached to a rib, then it is outside the lung and beyond the original cancer site -- thus Stage IV.

[J.C.]

Rosie,

you got all the answers about second opinion

and the reason for it.

I want to welcome you to this board that

helps so much, with knowledge, experience

and love.

J.C.