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non small cell lung cancer

sisymay
Posts: 2
Joined: Feb 2012

Hi I'm new here. I have a lot of questions if that's ok. My mother was diagnosed with lung cancer about a month ago. She told me that it is inoperable, but did'nt tell me why.
Last week she learned it is non small cell. We just found out today that the cancer is not in the lungs or on the lungs, but in the fluid around the lungs. The fluid keeps building up and it has been removed 5 times already. What I didn't think to ask the dr today is, if the cancer is in the fluid, why isn't it removed when the fluid is removed?
Today dr. said it is stage 4, which from what I have been reading means it has spread to other organs in the body. As far as I know dr. hasn't said anything to my mother about the stage it is at until today. I don't know at waht stage it was at when she was first diagnosed.
When my mother was first diagnosed, the dr. said that on a scale from 2 to 20, hers is 8. *what* is 8 ?? I researched to try and find what this means, I found nothing. All I found is information on the different stages. He did not tell her what the stage is until I asked today.
I asked him what 2 to 20 meant and he shook his head and said don't worry about it. (?)
I asked how serious was this and he said don't worry about it. (?)
She has been doing chemo once a week, this is her 4th week. Last week, dr. told her that there is a new medicine specifically made for her type of cancer called xalkori. It is a pill. He thinks it'll be better than the chemo even though the side effects really worry me. My mother wants to do this instead of chemo.
He told us that stage 4 doesn't really mean anything, because it means different things to different people??
My mother thinks he's a great doctor. He seems to be, but he is skirting around the serious issue here and I guess he doesn't want her to worry. But, I didn't doctors were suppose to be this way toward patients.
He told us not to worry about the stage now, or how serious it is, until he sees how the xalkori will work.
I know I will have more questions later. Thanks for any help you can give.

lekkerone
Posts: 199
Joined: Jan 2011

I would not put up with a doctor who did not answer my questions directly. He is not treating you fairly and there are too many unanswered questions. If I were you I would seek a second opinion from a reputable hospital. Good luck to you and your mom, Diane

sisymay
Posts: 2
Joined: Feb 2012

Last week she learned it is a rare non small cell cancer that is caused by a defect in a gene called Anaplastic lymphoma kinase (ALK)I have remembered that a few weeks ago an MRI was done, and 3 'spots' were found. One in right breast, one in lower back, one on left side of lung. All along I thought these were cancer, but last night I asked my mom and she said she doesn't know what they are. I don't know why she didn't ask, but I'm going to. This brings up another question - if the cancer is in the FLUID, then how can these SPOTS be cancer? The fluid is not located in the breast or lower back. What could these spots be?
I also remember that she said that it is inoperable. I don't know why. She doesn't, either. Either she doesn't really know, or she doesn't want me to know. I'm going to ask dr. this also.

sirwmscott
Posts: 12
Joined: Sep 2011

So sorry you are having to go through this. Is it possible your Mother has spoken with the doctor and told him to limit the information he provides when you are there? My suggestion is to sit with your Mother and have an open conversation about what she wants to hear. My Mother also has stage iv nsclc. We had this conversation when I asked her if there were questions she was "afraid" to ask the doctor because she might not like the answer. She said no - that the answers to the questions about longevity, etc. would not change the path she was on. She has given the doctor permission to provide me with all the scan results, blood work, etc. She knows I am her advocate and it works for us.

Good luck with your journey.

MaryLou50
Posts: 1
Joined: Feb 2012

My Mom passed away mid 2011 from non small cell lung cancer. She was in her early 50's, ran or walked everyday until she became too sick and fraile from treatment. She was very healthy too I might add. When she was diagnosts, we were told it was stage 4 and she had 15-18 months, she passed away about 15 months after the diagnosis.

By the time the cancer was spotted it had spread to her bones, then a few months later lesions on her liver were found. Then fluid started building in the pleura sac. They had drained her lungs 2 times, the first time after they drained the lung they put an antibiotic into the area that was filling with fluid. This was in hopes of stopping the fluid build up again. Well to say the least the lung sac filled up again and they tried a "talc slurry" instead of the antibiotic used in the previous round in hopes that that would clear up the fluid issue. Her lung did collapse when the did the 2nd thoracentesis, every time the sac is punctured it causes a higher chance of lungs collapsing. Either way the talc slurry did work longer but both procedures were very painful for my Mom and she said she would never do them again. The talc slurry did require a chest tube for a few days to make sure all the fluid was gone.

She developed pnemonia at one point and I am not completely sure if they ever got rid of it.

She was regularly being checked using MRI's, PET Scans, CT's and X-rays for new growth or possible "shrinkage." I can't even count the number to times we have to rush her to the ER b/c of different complications

At one point they did find a lesion on her brain and began radiation on that one spot. Other than the 2 raditation treatment she was going through Chemo.

About 2-3 months before my Mom past away she started complaining of upper back pain. Her oncologist immediately had her in for an MRI and they found "hot spots" of new growth. On an MRI, cancer can normally be seen in red. But sometimes the red can be misleading, based on procedures that may or may not have been done.

Its hard to be a daughter and watch your mother go through so much! It seems like the DR's aren't giving you the answers you want or need, but they may not have the answers OR my here is my other thought:

Lung Cancer is very hard to cure. There are very few, if any, treatments out there that will send a person into remission. There are a ton of drug trials out there you just have to look and contact different medical facilities. Some of the drug trials have a 5% chance of slowing down the cancergiving a persons life expectanct of 5 years instead of 1, but you may be on a pretty harsh chemical.

My only wish is that more research and reseach money goes into finding better treatments for patients with lung cancer. Not to say breast cancer isn't a serious illness, but Lung Cancer is one of the biggest killers right now (regardless of being a smoker or non-smoker)... I wish there was more funding for finding better treatments and finding a cure. From everything I've read, funding to breast cancer, research and awareness is very high and lung cancer research funds are very low. I think its time the table turns a little.

I am not even 30 years old, and I have a family of my own and let me just say it is hard to watch your mom suffer through lung cancer. And to have to look at your child and explain Grandma was really sick and has gone to heaven to be an Angel. I NEVER wish this upon anyone.

My advise, stay involved with your Mom, get to know the Dr and Nurses on your Mom's Team. Definitely ask for copies of reports and ask as many questions as you need. Keep lists of everything from medictions to tests that have been ran. Lung Cancer is not an easy journey, for the patient or the family, but try to keep your head up and you do what you feel you need to do for your Mom and yourself! Good Luck!

dennycee
Posts: 685
Joined: Mar 2011

First of all let me say that you will be a great advocate for your mom. Has she signed a HIPPA release so that you can receive med reports on her behalf? If not please do that asap. When you have the release call your moms oncologist, make a list of you questions and ask for clarification when you need it. Request copies of all her reports and test results, even the blood tests. You don't have to wait for her next appointment to talk to them, call today.

When she goes to her doc with or without you, it be a good idea to bring a taperecorder along. You get so much information it is hard to take it all in and it brings a whole new vocabulary with it.

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