my mom has lung cancer... stage four...

[johnny_cubert]

Hello,

my mother told me thursday night that she has stage four large cell lung cancer. when i spoke to my step-father he said the doctor(s) in Dubuque, Iowa also mentioned stage three lymp nodes, cancer in bones and in the blood. I write this as he said it - as a list.

Since speaking with him, I've learned that it is not "large" but "non-small" and that it is only stage four not stage three lymph and stage four blood... now I understand fully why he and my mother want me to accompany them on the visits to take notes for them.

My mother was a smoker from the ages of 15 to 50. She is now 58. Winston 100's were her choice. She also took the birth control pill for at least two decades. (She was a highschool dropout runaway, I was the result of her teen aged pregnancy... She and my father married on her 16th birthday, I was born shortly afterwards, she married met my step-father in 1990).

I immediately demanded that they leave Dubuque and come to Chicago -- I assume the "big city" has better options, better doctors, perhaps even a little more progressive/experimental treatments.

In Dubuque, they told her it was terminal and that they could do nothing for her -- and from my calls around Chicago and to friends, it seems they are right. It is not about saving her life, just prolonging it and making it more comfortable.

My aunt Joanne was the first person I called as I stood at the cocktail party with my cell phone and martini. I stood against the wall, my back to the 300 people in the room, my sobs quieted by the soft wallpaper. My mother and I just had our fist conversation...

My aunt told me to call Stephanie Williams (northwestern?) to make an appointment. I called and left a message. I then called some friends on the north shore of Chicago, I trusted them to know "the best" and asked for a referral. They made some calls to friends and got back to me with Tom Hensing. "THE doctor to see" they said. "Hospitals around the country have tried to get him -- that's how good he is." And I trust these people. So I called.

I was really happy with the outcome.

I spoke to Gail (847-570-2000, Evanston Hospital). Gail spent (what seemed like) 20 minutes on the phone with me asking me questions, telling me from her experience what I should expect, regardless of whether or not my mother sought treatment from their hospital. Luckily, there was an appointment available Tuesday.

Dr. Williams' office got back to me and we got a wednesday with her.

My parents have insurance, and very little debt, so why not see two oncologist?

My parents were reluctant -- my mother wants to be close to her husband, he needs to plant the crops over the next month... but they both want what's best for her. I told them to hire someone to plant the crops and I would find them a house to rent if it came to that, near the facility of her treatment. Gail told me that sometimes it's not having the best doctor in a big city that matters, that sometimes the comfort of being home means more -- and that depending on what exactly needs to be done, Dubuque could suffice.

Everyone considers this a pronouncement of death... but we all die -- at least we now have the chance to enjoy my mother's company. I've called her everyday, three times a day... my sister and she have made up -- as have others who weeks ago may not have been getting along.

I've decided not to "come out" to my mother, it no longer matters to me that she knows that I am gay.

i began to google and found this sight, but on my way here I have seen (read) so many contradictions...

I look forward to the meetings on tuesday and wednesday and look forward to being there for my mother as she goes through this horrible experience.

[beatlemike]

My prayers go out for your mother and her family at this difficult time.Please keep coming here for help and support.There are many stage 4 here that will be glad to share with you.

[Patkid]

A PFLAG hug from me to you.

Pat

[Don M]

Johnny: If an oncologist told me that I had terminal lung cancer and there was little that could be done, I would find another oncologist. You are doing all the right things.

One thing that might work is to get the second opinion in Chicago, and have their recommendations administered at the local clinic in Dubuque. That is what I have been doing for my situation. I see doctors at a very good cancer center in Seattle, and have my treatment in my home town, about 150 miles away. The Seattle docs and my local oncologist have a good relationship.

Of course, it may be possible that the Chicago guys will agree with what Dubuque says in terms of treatment. But, I don't think an an oncologist should offer an opinion that one's cancer is terminal.

I have been doing this cancer thing for over 4 years now and still have a reasonably good quality of life.

Don M

[SandraL]

Hi Johnny. Please know there is always hope. It sounds to me that she is very lucky to have you advocating on your behalf. I hope the appointments go well and your mother can get on a treatment plan as soon as possible. Everyone will feel a lot better after that. Take care

[recce101]

Hi, Johnny, welcome to the group. You won't find a better place for support anywhere on the Web.

It's easy to understand and imagine how the confusion may have occurred in the initial descriptions of your mom's condition. Some of the terminology is a bit strange, and that on top of the shock can certainly lead to misunderstanding. Here's a good reference on the various items that determine the staging of non-small cell lung cancer (NSCLC) -- every time I go back to it I learn something I hadn't noticed or appreciated before:

http://www.emedicine.com/radio/topic807 ... nm_staging

Some of the other things I was going to say, Don M has already said, and better. Let us know how it goes Tuesday and Wednesday. Best wishes and Aloha,

Ned

[Treebywater]

Johnny,

It sounds like you are a fantastic advocate for your Mom. I'm so glad she was you on her side. Welcome to our group and I hope that you will find much HOPE here.

[deb10653]

Hi Johnny, I am sorry you have a need to be here but it sounds like you are doing the right things for your mom. As a fellow Iowan, we also sought a second opinion, we are so close to Mayo and to Univ of Iowa Clinical Cancer center that it was foolish to not pursue. I hope Dubuque has a Cancer Center like we do and she can get good treatment and still be "home" I think it makes a big difference, at least to my husband and me it has so far. Good luck with your meetings and let us know.

Deb

[Shelley (MLC)]

Hi Johnny and welcome. I am so sorry to hear about your mom, but please don't give give up hope (or let her) There are quite a few people here with stage 4 disease and they are doing MUCH BETTER than their Docs said they would. Please read the profiles here and you will find hope and strength to get you through this.

I definitely agree with Don Ms advice. Have your mom see an oncologist in the Chicago area that you are all comfortable with. All the initial tests can be done there, but treatment can be administered wherever she is more comfortable. This may be in her home town. That was the case with my mom. She wanted to be near her friends and most of the family. I am a nurse and my husband a physician and believe me, I would have her here with me if at all possible. She has done very well with treatment and loves the Dr and staff in the center she receives chemo (they actually come in each week from a University Cancer Center about an hour away)

I wish you all the best. Your mom has a wonderful son!

Shelley

[Muriel]

Hi Johnny,

Welcome to our group. We have a lot of people with a lot of NSCLC experience - many stage IV. You definitely need a second opinion and a 3rd one will make you all feel even more confident of what you decide to do. My son lives in Chicago. He has a friend who receives treatment at Evanston Hosp. - or it's cancer center - and when I was diagnosed suggested it as an option for me, also.

Definitely, you need to accompany your parents to the doctor appointments. It's hard to remember everything the dr. tells you, so several pairs of ears are good. Also, they and you should be asking questions.

As I understand it, the doctor she saw said that there was nothing that could be done for her. Does that mean that she sent her home with no treatment plan - chemo and/or radiation? As I understand things, you generally don't get a cure for stage IV NSCLC, but it can be controlled for quite a while.

Good luck. Let us know how the dr. appointments go this week.

Muriel

[johnny_cubert]

thank you all for the comments and for the histories of your (or your loved one's) treatment...and diagnosis...

I'll respond more and keep up with this foundation, I am very lucky to have found you all.

johnny

[Patti B]

Johnny-

Can't give too much more advice than whats been given already but I did want to welcome you to this site. You will find lots of hope here.

I am Stage IV and was diagnosed 19 months ago and am still going strong. We are treating it like a chronic condition, like one would with heart disease or diabetes. So please don't give up hope and don't let your mom give up, either. I think attitude has a lot to do with it, too.

If you go with mom to the appt, bring paper and pencil and write down what the doc says. Also, write down your questions ahead of time since there may be so much going on that you may forget to ask.

Many prayers coming your way - please let us know how the doc appt goes!!

Hugs - Patti B.

[MsC1210]

Hello Johnny

I cannot add to the great advice you have gotten already but wanted to welcome you to the site.

I am sending many prayers for your mom and for YOU.

Warmly

Christine

[Janet B]

Everyone has given you good advice. I just want to welcome you also - and take a look at my profile - I was given a pretty dire first opinion - and I am still working and playing every day! Keep us posted.

Prayers to you and your mom - Janet

[peebygeeby]

Hi Johnny,

I know exactly what you are feeling. My guy Hank received a stage 1V diagnosis just about six weeks ago.

You have definately come to the right place here. There are so many wonderful, supportive, informed people here.

When we first heard this diagnosis, we also thought, there is no hope. That is completely untrue. Something that was told to me by a wonderful lady named Barbara here on this board, was that her husbands oncologist is treating his cancer as a chronic condition. No, it can't be cured, at least not right now, but there are treatments available that can manage it, and hopefully manage it until something better becomes available. That's how I am now looking at this situation. We are going to manage it. Do not give up hope. Find your Mom the best care that can be had, and fight!

I wish you and your Mom all the best in this journey,

remember, you are not alone.

Gail

[dadstimeon]

Welcome Johnny,

Glad you found us.

Rich

[paul verdon]

Johnny

As all these wonderful friends on this site have said there is hope. My partner of 25 years was dx July 07 with stage 4. There is a tumor on his lung and he has bone mets. We thought it was over last year. We have since found out that the doctors try to treat even stage 4 as a cronic problem. They try different types of chemo until they hit the right one. There are also clinical trials out there, so please get your mother to the right doctor. We interviewed 3.

On the coming out issue. You should play that by ear. She has a lot on her plate now. You may find that as the treatments work and everyone's emotions settle down you may have the chance to bring it up. Try talking about a gay friend and see how she reacts. She may even know but hasn't talked about it with you(?).

Paul

[catie]

I am sorry to hear about your Mom. I wanted to let you know, though, that there is a good Dr. at Rush hospital, too (We are also in Chicago) His name is Dr. Phillip Bumoni (I think i've misspelled it) supposed to have a great reputation. 312-563-2162 is his nurses # who scheds the appts. Supposed to another "best" Helped many stage IV's.

Good Luck! Keep your chin up!

[rainbow]

Hi there and so sorry to hear about your mother. Just wanted to let you know I was diagnosed in Oct. 07 with NSC Lung Cancer Stage IV. Matter of fact I lost touch with this fantastic group because we moved to Houston to be near our daughter & 1 grandson...... and will all the treatments, doctors, traveling it just didn't happen.

Johnny I read some of the replies and they have very good advice. I also have not had time to upday my profile, and I will do that tomorrow, but will give you a little history. I am 51 and also smoked. They found a small tumor in upper right lobe and a lymth node in my armpit which was biopsied. That was the first part of my journey. I was diagnosed with NSC lung cancer. Maybe I put the real name in my profile also.

Then it spread to behind my left retna, my left tibia, femur, hip and a very small unclassifieable spot on my liver. No movement to brain.

After undergoing over 100 rounds of radiation, another round of Chemo, and now I am on avastin and tarceva the results have been absolutely amazing!

The tumor behind the retna is GONE! (special camera for eyes proved this, plus I can see better in that eye than I have in a long time). The small tumor in my upper right lung is GONE. The pain in my bones is tolerable with only Advil and 1 femoral patch every 2-3 days. I have never had to have morphine or any pain killer through my port, I have not had to be hospitilized through any of it so far.

My oncologist put me on avastin as a chemo instead of an add on, because I toleralte Chemo very well. I am on Zolmetta to strenghten my bones and tarceva as a chemo not maintenance. The reason I am only on that regimen is because my platlets tend to go real low from the radiation treatments. They have never gotten low enough for a transfusion and they continue to rise.

The point I am trying to make Johnny, is don't ever ever give up. Don't let your mother give up. Take extra notice to her main caregiver as they also go through many ups & downs too with their feelings. Your whole family will. I have also been blessed in that way as my husband of 30 years has been my primary caregiver since we moved back to Houston via Baton Rouge. Now he is finally feeling the effects of being a caregiver.

I cannot stress the importance of a positive attitude! Our minds play an extroidinary role in the healing process as does a good diet, plenty of rest & exercise

And last but not least very good doctors that you trust.

If you ever need to talk, I am here for you.

Keep the faith and I will be praying for her as well as the whole family,

Denise

[eYuppie]

Johnny,

Ive fought Stage IV non small cell lung cancer (adenocarcinoma), and a golf ball sized metastasis in the brain. I was diagnosed April 2, 2007 during brain surgery. When I left the hospital, the oncologist opined that I probably had about 4 months --- to which I replied, "That's not good enough!" We fought back with 45 rounds of radiation (25 lung, 20 brain), and chemo that lasted until late November 2007. My oncologist now says that all bets are off.

Not that the oncologist's forecast matters, good or bad. What matters is your mother's attitude and hope.

My attitude has been positive the whole time, and I am convinced that I have many years ahead. Your mother has every reason to be positive -- she has you by her side. The statistics are meaningless. Your hope, your attitude, your faith mean everything. There is a light at the end of the tunnel, and all that you can do is to walk toward it one step at a time.

There are gifts and blessings that come from the experience with cancer. We discover that the world was spinning all by itself long before we were born on this planet, and it will spin just fine after we're gone. That's an enoromous gift, because it frees us up to live more simply than we lived before -- we are free to live in gratitude, with warmth, in laughter, to live openly and with love, to appreciate sunrises in addition to the sunsets. My relationships have grown stronger and I've never once felt that I was battling this disease in a tunnel alone.

My prayer is that there is good life ahead for you and for your mother. Despite what you read, Stage IV is not a sentence.

Good luck to both of you in all that you face.

Brad

[beatlemike]

I really like what you said Brad! Hope you share more often.

[Janet B]

I second that beatlemike! - I love what Brad has said - it is how I feel . I have told disbelieving family and friends that in an odd way this has been the best year and a half of my life. I have been reminded to live each day as a gift, to be kinder, and more forgiving, that God is good, and so are the majority of people. And I think that has something to do with why I am doing so well.

Johnny - we haven't heard from you in a while - let us know how things are going?

Janet

[Patti B]

I third it - Brad, you need to come here more often. We all need to be reminded of the things you said - sometimes its hard to believe and then someone like you comes along and says things so eloquently.

Thanks for the inspiring message. Made my day!!

Hugs - Patti B.