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mom diagnosed with NSCLC with mets to brain


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My mom was diagonsed with nsclc with mets to brain in september. The doctors said her prognosis was approx. 8 months and at that time I did not want her to know. She is an alcholic and I thought that she would just go home and drink herself to death. I asked the doctors not to mention her prognosis. please give me you advise as to what I should do. This is killing me and Im getting very depressed.

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If we all just lived to our prognosis Almost every survivor here would not be here. A prognosis is just that an, educated GUESS Every one here will tell you the same thing. Next, to beat your depression and this is not unusual try reading some of the letters and posts in the good news Forum. And Inspirational Forums. THey will give you a lot of hope. Stage III is not a death sentence by a long shot. Brain Mets can be treated by options Like Drugs and I believe Radiation Treatments. Being depressed with this disease is normal. Do not let iot get the best of you though. THis is the fight of Moms Life and Both of you ahve to be up to the challenge.. Prayers and Hugs for both of you......

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Welcome. I have a couple of questions. It sounds as though she is not receiving any treatment. Is that correct? Are there any plans for chemo or radiation? Is she at all involved with what is going on with her health?

This is just my opinion. I think that she has the right and the need to know that her condition is very serious. I also think that the doctor should not withhold this information from her. If, for example, she really were to die in 8 months (or less) don't you think she should have the opportunity to deal with her affairs? On the other hand, I wouldn't pay much attention to that 8 mo. prognosis. With treatment it could be much longer. Has anything been done about the brain mets? Most people are given radiation to reduce or kill the tumors.

Best wishes.

Muriel

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thank you for all your responses. I was a bit brief so I will go into more detail. On Sept. 17th, 2007 my mom who was still working full time had to leave work b/c she could not hold pen. I brought her to emergency room and she was diagonsed with the Nsclc with 1 met to brain in the next two days. Because my mom is an alcoholic the doctors has to put her on medicine when she was in the hospital so she would not go into withdrawal. She has been recieveing treatment. She has 15 whole brain radiation treatments and also has had 3 chemo. Once every 3 weeks. She has not had a drink in over 3 months and I dont think I could have been her care giver if she had been drinking. I really love my mom and has always tried to help her but she never was able strong enough to stop drinking. I thouhgt if she knew her prognosis that she would just drink herself to death. So I asked the doctors not to mention her prognosis. She does know that she lung cancer with mets to brain, but she really thinks that she is going to get better. I am so proud of her that she is not drinking and she has been so positive. All I ever wanted was for her to stop drinking and now she has and now she is not going to make it. My question is should she no that she is terminal? Thank you so much for any imput. I am in this alone my mom does not have any family so I am her sole care giver and I intent to take excellent care of her and make the time she does have left as comfortable as possible. I will do anything for my mom.

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WOW! That's a lot to handle. Now I understand your dilemna much better. Congratulations to your mom for not drinking for 3 months. I'm sure that was difficult for her to do. I think you should wait to tell her anything until after she has had a CT or PET scan to assess the effectivness of the chemo. Then, if the cancer has progressed much, you probably should tell her that she isn't going to live too much longer. [How much longer? No one knows for sure.] Try to make sure that she understands that you can't care for her if she starts drinking again. [How? I don't have any ideas about how to do that?]

No matter how long she does survive, as time goes on, her condition may be such that you won't be able to care for her. Hospice would be the answer at that time. In her home or in a hospice facility. That's ok. There are some very good ones and they can offer you lots of support, too.

Right now, if you don't already have some support, you would probably benefit from social services available at the hospital or some other agency.

Out of curiousity more than anything else, what do you do in your "free" time when you aren't needed by your mother? Are you living in a large metro. area or small town?

Hugs to you and your mother.

Muriel

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I am sorry about your mom. When my husband was diagnosed the prognosis was 4 months. He lived over 5 more years. The statistics are old and there are many new drugs available. We have many members here with a similar diagnosis to your mom that have lived many years. I wouldn't tell her the time line-- it is most likely wrong, but she needs to know all the information. Let us know how things go-- welcome to the board.

Rochelle

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Thank you to all of you who have responded. This has been quite an experience for me. I live in West Haven, CT. My mom lives alone about 5 minutes from me, and so far she has been able to care for herself. I spend as much time with her as I can. I work full-time and at some point may have to take a leave from work to help with my mom, but we have not reached that point yet. I want to thank all of you for all your kind words. I will wait until her next pet scan which is january 11th, then I guess I will have to decide what to tell her.

Robyn from CT :)

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Hi Robyn. Your plan to discuss the seriousness of her health after you have PET scan results sounds good. It sounds as though she must be getting along ok right now. And, if her scans show any reduction in size she is getting better. We never know how long "better" will last. When you do have that talk with her, you might try to put things in the context that everyone is different and there is no way of telling how effective treatments may be or what might be discovered next to help her. Many look at cancer as a chronic disease to be treated as necessary - recognizing, however, that eventually treatments may/will stop working.

Please, please let us know the results of her January scan. Thanks!

Muriel

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"bugno92" ...She does know that she [has] lung cancer with mets to brain, but she really thinks that she is going to get better. I am so proud of her that she is not drinking and she has been so positive. All I ever wanted was for her to stop drinking and now she has and now she is not going to make it. My question is should she [know] that she is terminal?

Please don't count her out yet! It's very possible that she WILL get better, and perhaps already has -- her next scan should give an indication of that. In any event, the so-called "prognosis" you were given is not tailor-made for your mom, but simply a historical average (or median) for a large number of patients with a similar diagnosis. Some do much worse (doesn't sound like your mom is one of those) and some do much better (her positive attitude can help her be one of these). Some docs don't take the time to explain what's meant by these numbers, and even if they do, some patients hear only the numbers and think they apply directly to them. I've learned a whole lot about my own cancer in the last 16 months, but one thing I have never bothered to learn is the prognosis associated with my diagnosis (NSCLC IIIB, malignant pleural effusion). If I asked my oncologist next week he'd probably look at me funny, since I'm most likely well past that point already and I'm in better condition now than I was when he first saw me.

I think it's absolutely wonderful that your mom has stopped drinking, and I hope it lasts forever. I try not to think of alcoholism (or nicotine addiction, for that matter) as a "weakness," but rather as a chemical imbalance or genetic anomaly. It occurs to me -- although I've never heard or read this anywhere -- that the chemical changes brought about by the cancer itself as well as the chemo and radiation treatments, in addition to the psychological shock, may have actually helped your mom to stop drinking. As strange as it sounds, sometimes a cancer diagnosis can have very beneficial effects on a person's values and perspective.

My best wishes and Aloha to you both,

Ned

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Hi Ned,

My mom does seem to be doing okay at the present. She has lost approximately 23 pounds since September and has no energy at all to do anything but clean her home a bit and cook for herself. I have never looked at her alcoholism as a weakness more of a medication for her. She has always suffered from depression. I am so happy that she quit drinking b/c I would not be able to care for her if she was drinking. She changes too much.

BTW, I was in Hawaii in 2005 to do a triathlon. It was so beautiful, my favorite place on earth :)

Robyn

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Along with what everyone else on here has said, the prognosis is an estimate. When my mom was diagnosed with stage IV ncslc, her dr told her that "on average" people in her condition live for a year. It has been over a year, and she's still with us. Granted she now has brain mets, but she's still living, she's still fighting this awful disease.

She even decided this year to leave up her Christmas tree so she could enjoy her ornaments. She says if she doesn't make it another year, she will have gotten to enjoy her tree. And if she does make it another year, she won't have to put up her tree for next year. :)

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