Question about staging NSCLC...please help

Remus · New User Joined: 26 Sep 2005 Posts: 7

Hi -

I'm wondering if someone can answer this question -

My mother was diagnosed with lung cancer last summer (Aug. 2004) and I think at that point it was Stage II. However, she has since developed a brain tumour, gone through whole brain radiation etc... From what I'm reading, it sounds as though it would now be considered Stage IV lung cancer (since it's metastasized). Am I correct in my assumption?

Like everyone, just trying to figure out what the prognosis might be as she doesn't want to know.

Thank you for your help

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

This would be Stage IV as it represents a distant metastasis.

Remus · New User Joined: 26 Sep 2005 Posts: 7

Thanks Mike - I appreciate the feedback. So, if it's stage IV, what timeframe is to be expected? I know every case is different but at stage IV, I'm assuming it's only a matter of time now...

Karynn

tobie · Regular Joined: 29 Jun 2005 Posts: 22

Hi,
My mom was diagnosed stage IV this summer with mets to the bone and lymph nodes. When I asked for the prognosis, I was told maybe a year with aggressive treatment. She has completed radiation but isn't interested in the chemo. We were told that her life expectancy would maybe be a couple of months less without the chemo. Not great news, I'm afraid.

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

Tobie is right, it is not great news.

Like everything else, the prognosis can vary.

I hesitate to throw out numbers. As we saw in the Peter Jennings case, it could be very short. Most of the cases I have seen with longer than 1 year survival were not taking what is considered standard treatment in this country. In Europe, high dose melatonin is given (sometimes with IL-2), while in Japan PSK is used to good effect. There are a few clinics that use these treatments in this country, but not many. MD Anderson hospital has done some testing with these. If you want to check these out, here is a link to the place that clinics and doctors use for this purpose:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed

The studies show that people treated with these agents live longer with a better quality of life. Some of the studies are using these agents with and some without chemotherapy. Most of the studies show that people have less side effects from the chemo when they take melatonin or PSK. Both of these agents increase the effect of P53 genes. The P53 genes regulate the growth of other cells.

MD Anderson hospital recently reported a lady who has made it so far over 5 years. She is on an immunotherapy drug that is still in the trial stage. This treatment involves the introduction of the P53 gene into the patient using a virus as the vehicle.

I am assuming your mother has NSCLC which is much more common than SCLC. Each type has different progression and treatment.

First, you need to find out which type she has. Second, there is probably no way to know how long she had the disease before she had symptoms and diagnosis. Some people have lung cancer for quite a while before going to the doctor, so the prognosis of a certain number of months may be obscured by the fact that much of this time has already expired.

I, personally, would respect her desire not to know her prognosis. Even if you determine a particular prognosis, it might cause her to lose hope. If this happens, it will have a very negative effect.

Remus · New User Joined: 26 Sep 2005 Posts: 7

Thank you Mike and Tobie for all of your information. Please note that if I wasn't respecting my mother's right not to know her prognosis, I would be sitting in her Dr's office, not posting online. Of course I respect her right, but I also feel I have a right to prepare myself for what's coming - that's all.

Again, much thanks for your comments - I wish everyone the best for themselves and their families.

tobie · Regular Joined: 29 Jun 2005 Posts: 22

Hi Karynn,
I couldn't agree with you more when you said that you would like to be prepared. It is sometimes like pulling teeth to find out the prognosis. I guess the doctors don't want to be wrong. My mom doesn't really want to know her prognosis either but I felt that I had to know even if they turn out to be wrong. Being able to put a time frame to life expectancy has helped me realize that she really is quite sick and time is limited. It has helped me deal with the reality of the situation. It has brought the family together in a lot of ways too. When there is a holiday or birthday, everyone comes to celebrate as a family. "It might be the last time that Grandma can come to Johnnie's birthday or Thanksgiving or whatever". Our family bonds have been strengthened by this.
Does anyone out there believe that "every cloud has a silver lining"? Strange as it seems, stage IV lung cancer has been a blessing to our family in a couple of ways. It has brought us all closer together. Also, mom is in the early stages of Alzheimer's Disease and it is nice to know that she will die from the cancer before her mind implodes and we all become strangers to her. I guess that if you have to look for a bright side to things, there it is.

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