You Have X Months ....

My husband was diagnosed in June 2004, days before our wedding and his 60th birthday, with glioblastoma grade 4. We decided against resection -- the possibilities included blindness and loss of language. So he has had radiation and chemo and he is doing fairly well -- has problems with language and vision, among other things.

Never, though, did any of his doctors say to him, "you have x months." In reading so many messages to this and other groups, it seems to me that this is unusual -- it seems more common that doctors create a timeline. Although in some ways I would very much like to have such a guide, and I do know the averages for this disease, my husband has never asked me or any doctor and I have kept my silence.

I've come to feel that this is a good choice, even though it has made a few things much more difficult. I believe that by not asking, he's not putting a frame around his life. But he also sometimes says things like, "If I live for three years..." and I feel like I'm hiding something.

I would love to know what others' experiences are with this issue. Do doctors really know? Does it matter, given that they are only guesses or averages?

Jeanne

Jeanne: From personal experience, I wanted to know what the stastistics and laws of probability and averages held for me. I viewed it as "general information," not facts chiseled in stone. Knowing that most people, who have been where I was at the time, lived only months, I knew I had to prioritize my time. Taking care of important matters then gave me a sense of comfort so I felt I could face the inevitable with less worry over small things. But that is me. If your husband isn't asking, maybe he really doesn't want to hear a number. I wouldn't dump negative statistics on him if he isn't asking.

I think many doctors avoid the "x-months to live" scenario so that 1); patients won't focus on it; and 2) because it can very so much due to individual response to treatment. None of my physicians mentioned "x-months" until I asked point-blank.

I was diagnosed with non-small cell lung cancer Stage IV (mets throughout the body, skeletal system and brain) in October of 2003. I have been truly blessed in that I suffer no pain or dysfunction because of my disease. I only have side affects from the treatments. 8-)

Now, twenty months later the overall picture hasn't changed. I still have mets where I did originally, and the cancer is not in remission, but is "almost stabilized". I say "almost" because no treatment has totally eradicated the primary tumor, and without treatment, my CEA level slowly rises at a rate of about 10-15% a month.

Back to your question. My original "odds" were less than 5% of surviving two years. Statistically, my current odds are less than that because the original tumor was never alleviated. But you can also say that my odds are higher because I've had no ill effects and because the disease has not "spread".

The odds are impossible to determine. Age, health, genetic makeup and patient response are upredictable. Use the statistics to plan for you children, then forget the numbers, and get on with living, even if it's only day by day.

God bless.

Lonestar, thanks for that info. My mother was just diagnosed last week with the same cancer as you have and we are moving her to our home. We do not know what the timeline is going to be like, but your story gives us hope.

We are grateful for every lucid day with her, whether it's one more, or hundreds more. If it is shorter, we're okay with that, but quite understadably, we hope it's longer, but most importantly with quality of life.

Best wishes to you,
Russ

My husband passed away Sept, 4, 2005. He was diagnosed in May, 2005. We DID ask the doc how long he had. That was at the end of August and he was going downhill daily. Jaundiced. In a lot of pain. She gave us a ballpark figure of a few weeks. He died 10 days later. If I had it all to do over again, I wouldn't ask. I think my husband just gave up after that. It ws an awful thing to have hanging over our heads.