My mom diagnosed with NSCLC - General Questions

[Guest Andrea B.]

Hi All,

My mom was diagnosed with NSCLC in March 2003. I am feeling overwhelmed in trying to gain information and process through it all. She is currently undergoing daily radiation and weekly chemotherapy treatments. The doctor says surgery isn't a possibility, because it has spread out of her right lung to the lymph nodes. All other bone and PET scans are clear. I am wondering if we should seek a second opinion about surgery. I want to do all I can for my mom, because she is my best friend. Also, should we be looking into any clinical trials? Thank you so much for any answers. And I appreciate any support. Andrea Britt

[Debaroo]

Andrea, Let me first welcome you to the board. You will find much information and support here, the people are GREAT!!

My dad was diagnosed with extensive NSCLC in January 2002, mets to both lungs and the spine. All other tests came up ok. It has been a long journey. He underwent two forms of chemo, the last of which was Taxotere, then he was placed in the clinical trial for Iressa. According to dads last CAT scan the Iressa seems to have slowed the disease, and seems to be shrinking the tumors a bit, too. From what I have researched, once NSCLC spreads to more than one lung, it is considered to be a more advanced case. But that is not to say that just because surgery isn't possible, that your dad will have "less time". Although surgery is more desirable, it is not the ONLY way a person can become a long term survivor. From what our dads oncologist said, the Iressa couldn't be started until at least 2 forms of chemo were tried and prooved to be unsuccessful. Although the chemo didn't help my dad, his disease was progressing VERY slowly.

He did suffer a setback in December when we found out that Dad had brain mets, a common thing in lung cancer, but AGAIN, THERE IS MUCH THAT CAN BE DONE FOR THEM. He had Gamma knife on the three tumors, which is done as one treatment, and virtually kills the tumors-leaving healthy tissue alone. The tumors have been reabsorbed by the body, and Dad is doing pretty well. He gets tired, but is pretty much able to live life as usual. Even through the chemo, his quaility of life was pretty normal, aside from getting tired a few days after chemo, and an annoying metallic taste in his mouth.

So, please, try not to dispare. It is a tough battle, but one worth fighting. Don't pay attention to "statistics", they are old and inaccurate and, quite frankly, aren't worthy of my attention. I have more important things to be concerned with-like arming myself with information that can HELP my father, and planning my daughters 5th birthday party-which we never thought dad would make, but he most certainly will.

My dad hasn't had the need for regular radiation, yet. But we'll cross that bridge when we get to it. In the mean time, the best thing you can do for your mom (and for your own sanity)is to ASK QUESTIONS, ask the doctors, ask here-my quote is that Knowledge is power-and the only way to gain knowledge is to ASK, ASK, ASK. We had my dad pretty much cut white granulated sugar from his diet (the research I've read suggests that cancer "feeds off of sugar"), he added flax seed to his diet (nutrition store)-or if your mom likes fish, thats even better, and he took Maitake Mushroom (aids against side effects of chemo, and is supposed to aid the chemo in doing its job).

My point is, we havn't been able to cure Dads cancer, but we've been able to slow it down so that he has been able to enjoy his life-and we have been able to enjoy having him around. Prayer has helped, and venting here has been KEY in my getting through this thing.

Keep us posted, and take care and HOPE. Without HOPE, would we ever take any chances in life? Would we DARE to apply for a job, or a school, or HAVE CHILDREN? NO, NO and NO. Life and hope must walk hand in hand, or we will become crippled by doubt and fear. Take care, Deb

[JudyB]

Andrea, I think a 2nd opinion would be a good thing. Can't hurt. Also, if the involved lymph nodes are close to the affected lobe, they can be removed along w/the lobe. It is vital that you also talk to a surgeon who routinely does this type of surgery. From what I understand it is a difficult procedure to perform, and a lot of surgeons just don't want to do it.

I agree w/Deb's advice and will add: doctors can be wrong; films can be mis-read.; and there is no such thing as "false" hope!

And finally: There is NO LC that is 100% fatal.

JudyB

[Carleen]

Andrea I am so sorry about your mother, but I am glad you came to this board. There is so much information and support here, and I highly recommend you visit us often, it really helps.

I always feel that knowledge is power, and two opinions are always better than one. In fact my husband visited three seperated oncologists and also visited the Mayo clinic. His diagnosis and staging changed three times.

Regardless of whether or not surgery ever becomes an option, other doctors may have valuable information or suggestions on treatment that can be invaluable. My only suggestion is to not suspend treatment while getting these opinions. Go on fighting the cancer, if anyhing chemo may be able to shrink tumors enough to make surgery a viable option.

God Bless,

Carleen

[AdaW]

Dear Andrea,

I think it's very important to get second opinions. Like your Mother, my NSCLC had spread to my lymph nodes. I was always told that I could not have surgery, but after a year and a half of managing all the treatments, I became a candidate for surgery. The doctor who performed my surgery is one of the top thoracic surgeons in the country. I don't think just any surgeon could have performed the surgery because the location of my tumor was very close to a major blood vessel. He did a great job and hopefully someday I will look back and say that he saved my life.

The following website is a good place to start your search for a second opinion doctor. It's the web address for Comprehensive Cancer Centers (by state) in the US:

www.nci.nih.gov/cancercenters/centerslist.html

It's best to learn as much as you can about this disease, but don't get overly distraught about statistics. Many good things are happening with lung cancer research and you have every reason to be hopeful for your Mother at this point.

There is a new forum on this website call Tips and Hints. You'll find some good information listed there.

My heart goes out to you. Your Mom needs your love and care right now and believe me having a loving support system makes all the difference.

Sincerely,

Ada

[bobmc]

Hello Andrea; and welcome, so sorry to here about your mom,

I'll echo what others have said about a second opinion; I'm a firm believer in getting one. I did an although it didn't change anything, it gave me a sense of comfort that I was making the right decisions which is so important. I also found it real helpful to write down my questions before my dr's visit and have my wife write down his responses. It's so easy for information to get missed or misunderstood.

Again glad you found us and know more than anything that we are SURVIVORS.

God bless and be well

Bobmc - NSCLC stage IIB - left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today !!"

[Guest sharon]

Welcome, Sorry about Mom, but am glad you found this site to help you through this - the strength and knowledge I have gained through this site has been invaluable to me. I would also suggest a second opinion.... as the others said - it certainly can't hurt. Since this diagnosis is very new to you, it will take you a little while to "adjust" to the news but, once you do, you will see that Lung Cancer can be treated with success - Please take the time to read through these boards and gather as much info as you can - don't be afraid to ask lots of questions of the doctor, I find it very helpful to be proactive in Dads illness. Last but not least, you can be no help to your Mom if you don't take care of yourself!! My prayers are with you both... Love, Sharon

[Guest Andrea B.]

I want to thank each of you for the information and support. I am so glad to have found this website. It makes me feel like I am not alone and gives me much needed hope. I appreciate all the information you are giving me. Please know that I will keep each of you in my prayers. Thank you again.

[Estelleanna]

Andrea

WELCOME! Can't add much the others haven't already said. Just wasnted u to know that you are among friends that is just like family!

Estelle

[Tiny]

Andrea,

Just want to add my welcome to everyone else's. This is a very supportive place to find friends and information.

[Marie]

Add my welcome too. I agree with the others. A second opinion is the way to go.

[Deanna M.]

Andrea,

Just wanted to welcome you too. I don't know much about NSCLC, but I see the others have given you great info.

This is a wonderful group of people and you'll find a lot of support here.

Adding your Mom to my prayers.

[Candy]

Just adding my welcome. Its a place you wish never to have to be, but after weeks of searching the internet (PLEASE, don't do that, its a nightmare and most of the information is not correct) I found this board quite by accident and it gave me hope and so much good advice! This is the only good thing that came out of my internet research.

[ginnyd]

Another welcome.

My husband's PET scan indicated lymph node involvement - not his CT scan. Dr. said they would do a media???scopy prior to surgery. If that was okay they would continue with surgery. Media???? was negative. They continued with surgery. The dr. told us after surgery that there was in fact 3 matted lymph nodes involved.

What can you get from this, CT wrong, PET right, Media???scopy wrong, Dr. right. This journey is full of dichotomies. They told us if my husband had the surgery, no follow up treatment was needed. Read my profile.

Don't give up. Keep asking questions. Absolutely get a second opinion. Don't keep looking until you hear what you want (like changing hairdressers until you become beautiful). But look until you feel trust and comfort with the doctor.

Good luck and a big ((((((HUG)))))))

[Guest DaveG]

Andrea:

Sory you have had to find us. Welcome to Lung cancer Survivors for Change. Just remember that the word "Survivors" is part of our title, so that is exactly what we are about. Everyone here, however, as with anything else, Lung Cancer has no guarantees. Lung cancer, however bleak things may look, can be survived, at any Stage.

The big key to survivorship is a good, positive, mental outlook. None of here asked for lung cancer, no matter what our past behaviors may or may not have been. Nonetheless, we are here and we are here to survive

Take every opportunity to attain survivorship, and if that means getting a second, or even more, opinions, than so be it.

We are not statistics, we are living, breathing human beings, who wish to continue living and breathing.

You have the most wonderful loving, and caring people in the world. We are one big happy family with one big common bond - LUNG CANCER. Because of recent events in my own personal journey with lung cancer, I can attest to the LOVE that this BIG FAMILy HAS.