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Why metastatic breast cancer shouldn't be called a "chronic disease."

5/7/2015

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Picture
Tom Hanks, 2009
A few weeks ago, I got into a discussion with someone as to whether or not metastatic breast cancer should be referred to as a chronic disease.  She was adamant that it should and I was adamant that it shouldn't.  It should be noted that this woman does not have cancer.

The word "chronic" means "persisting for a long time, or constantly recurring."  In that respect, metastatic breast cancer fits the bill.  However, there's a key word missing from that description that is applied to advanced breast cancer ... terminal.  Metastatic breast cancer is a cancer that is persisting for a long time, or is constantly recurring, in which 98% of all patients with the advanced disease, ultimately die of the disease. 

Notice how death doesn't enter the average description of the chronic illness.

To give credit to the woman in the discussion, her concern was that if women (and the men with advanced breast cancer as well) didn't identify themselves as chronic patients, then perhaps they wouldn't avail themselves to the resources that are readily available to those dealing with chronic pain and whatnot.

That's a good intention, but it reflects the reality of not living in Cancer Land.  She has no real idea what is available to us and she really shouldn't take it upon herself to "lecture" a person with a killer disease about how to refer to her disease.  While talking to me about it, she admitted to be arguing with a woman on Twitter about the same topic.  The Twitter follower has lived with metastatic breast cancer for 15 years ... which, to the woman in the discussion, made her a chronic patient, not a terminally ill patient.

This is only the tip of the iceberg.  There ARE many women living five years or more with Stage IV disease (the official stats are 22%), but the dismal fact remains ... the average prognosis for Stage IV breast cancer is 24 - 36 months.  78% of women with metastatic breast cancer DIE less than five years after their diagnosis, with many passing away in less than three years.

I know many with chronic illnesses and their lives are NOT easy.  I see them struggle with crippling pain and I've seen them have to make adjustments to daily living in order to accommodate the disease that has changed their lives.  I am not dismissing the seriousness of chronic illness.  To be frank, in spite of my having cancer, I live a mostly normal life and many of my friends with chronic illnesses cannot make the same claim.

One illness that is often tossed up as an example living with a chronic disease is diabetes.  Diabetes is not to be messed with.  Not following the appropriate treatment plan can result in circulation problems that can end up in amputations and/or blindness.  It's serious stuff. However, since we see so many people successfully living with diabetes, many forget the damage the disease can do.  When one is diagnosed with diabetes, many just kind of shrug and say, "Diet, exercise and meds, if necessary, are all you need."  Naturally, this excludes the folks who have Type 1 diabetes which means they, quite simply don't have the proper insulin production their body needs.  No amount of diet and exercise will do anything for that ... that person needs insulin.

This is a long intro to a brief review of Rita Wilson's update on her breast cancer diagnosis.  She was recently interviewed by the New York Times and gave candid comments on her experience.  She encourages people to get second opinions and tells what it's like to have the feeling that people are staring at your breasts, evaluating if you look natural or not.

That's all fine and good ... it's her story and her experience with cancer up to now.  I truly hope that she remains free of cancer for the rest of her days.

In the interview, she talks about the support she received from her husband, Tom Hanks.  The writer of the article says, "Neither she nor Mr. Hanks had ever been seriously ill before, so it was new territory." 

Therein lies the rub.  Tom Hanks has been dealing with elevated glucose levels since he was 36 years old and was diagnosed as a diabetic over two years ago.  He has a chronic condition ... but to the eyes of the author, he's not seriously ill (and, technically speaking, he's not).  Yet, people want breast cancer to be put into the same category as diabetes?

It's a simple word, but if metastatic breast cancer is classified as merely something that is long-lasting or constantly recurring, then the reality of it being a terminal illness gets lost in the shuffle of words.  It becomes, as the chronic woman with the long-lived Twitter follower mentioned above, a not-so-serious disease.  It is not taken seriously.

There's just no cushioning the fact that metastatic breast cancer kills.  To hide that fact behind a "comforting" word is to do a disservice to those struggling to see the next day and to those who, for now, live normal lives. 




1 Comment
Katherine Chant
5/9/2015 04:41:41 am

also, the perception of bc as being chronic reduces the services for which we're eligible-which is not good.

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    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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