Monday, April 16, 2012

The World Doesn't Understand Stage IV diagnosis

This evening, I heard something and was quite stunned.  Ryan O'Neil was diagnosed with Stage IV prostate cancer.  His comment was "I'm so grateful they caught it early."  Early? Ryan, you need to get your ears cleaned out.  Stage IV is LATE STAGE means you will never be free if you are lucky enough to survive it for 5 years and only 10% do.

There was a woman on the Inspire MBC site (Metastatic Breast Cancer) who said that a woman who was a close friend of hers commented "Oh, are you still fighting that? I thought you were over it."  Just because we have hair, doesn't mean we are out of treatment, nor that we have beaten the disease back to "No Evidence of Disease" (NED).  It means we usually have a monkey on our back, although I refuse to let this monkey be of any great weight.

It means that we risk bankrupting our families, or draining the money intended for college and retirement.

It means that when the NBCC says that patients should receive no more than 4 treatments because it doesn't prolong life that much, that we live in fear that our insurance companies will not allow further treatments, no matter how well we are doing or physically means that we live in fear of not being covered at all because we have a pre-exisiting condition (something that "Obamacare" would prevent if it were allowed to stay in place, but that portion won't come into effect until 2014...leaving those of us who are not in the top 1% scared that we won't get the treatment which would help or that we need just because we are not wealthy.

It means that we can be on a drug, but have the cancer mutate so that drug is no longer effective.  Then, we wait and hope that something else will work.  It means that those of us who were diagnosed back in the dark ages and don't have fresh tissue samples can't be tested to see how effective a drug might be before destroying our nerve endings trying it to see if we can beat it back.

It means that people say stupid stuff to you like "Well, insurance companies have the right to pull the plug, just how far are you going to go and take these drugs?"  Well, I'm standing here in the grocery store talking to you....and if you really believe that, then you're telling me that my life isn't worth living or saving....and I wonder how you would feel if the tables were turned.


  1. People are so stupid sometimes. Sorry you had to run into one of them at the store. Not only do you need to fight a disease, you have to teach others who have a low health IQ.
    Chin up. Maybe you could invent a teflon shield so that dumb comments bounce back and hit the sender in the forehead (wouldn't that be fun?)

  2. Love your blog! I'm "mom2cat" from the Inspire group. I also keep a blog here too.

    I was first diagnosed with stage II breast cancer in 2003, in 2007 I became stage IV when it moved into my bones.


  3. Hi Shari! thanks for commenting and for your kind words. I recognized the similarities in the names and figured you were an Inspiree.

    Thank goodness for bone mets....Although, so many people I know with lung and liver mets are now doing well too. I keep on thinking, hey, I had 15 years NED before, why not again? Even 5 years NED would make me happy. :)