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Sunday, May 15, 2011

Awareness, pt. 2

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink.  Why would I want to put all this effort into writing a blog entry just to have it unreadable?  Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren't that happy.  Sure, it's not the death sentence other forms of cancer are.  Let's face it, some cancers are quick, brutal, and rapidly deadly.  For those cancers, the question isn't "if" but "when."  I have a friend who has a specific type of cancer that has a 0% five year survival rate.  ZERO percent.  I don't know what the one year survival rate is, but it's not great.  Another of my friends was told she'd live 12-18 months.  She fought hard. She battled mightily.  She lasted 15 months if I count correctly.  Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is?  How survivable it is?  How much progress has been made?

For starters, when we talk about "surviving" with breast cancer, we speak of surviving five years.  The term is "the five year survival rate."

Pardon me for not being too chipper about that.  I'm coming up on my second cancerversary. 

If a woman happens to be Hispanic, which I am not, she's more likely than other women to get aggressive breast cancers and die from breast cancer.  Were you aware  of that?

I've heard people, endurers as well as the non-effected, say, "At least the tumor is estrogen (or progesterone) receptive.  There's a pill for that."  Yes, indeed there is.  And those tumors tend to grow more slowly.  See how aware we all are?  Yet, not 100% of all those hormone receptive tumors respond to medication.  In fact, for people who are progesterone positive, under 20% respond to hormone therapy.  Oops!  Wasn't aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive.  It's called HER-2+ breast cancer. But joy of joys!  Herceptin cures it!  And if it does come back, "you just do herceptin treatments for the rest of your life."  Well, that's probably correct.  As long as the herceptin continues to work.  Of course, Tykerb is also an option.  But sometimes that doesn't work, either.   And, the woman dies. 

We are also all aware that breast cancer is curable.  And that's true.  To an extent.  Most women don't die from the cancer in their breasts.  They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones.  If the cancer just stayed in our breasts, we'd be fine.  Cut it out, chop 'em off, radiate 'em.  End of story.  However, that's not how breast cancer works.  There's never, ever a guarantee that even the smallest spot of cancer hasn't sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life.  Yippee.

Many of us are aware that there are things we can do to "prevent" breast cancer.  No, not really.  Other than cutting off breast buds at birth, there really isn't anything that "prevents" breast cancer.  There certainly are ways women can reduce their risks, their life time, risks of breast cancer.  These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later.  These are not "preventative" as we'd like to think.  Breastfeeding is not the same as wearing a condom to prevent pregnancy.  A condom is, what, 99% reliable although users of them tend to be less so?  Breastfeeding your baby for a year, two years,  a total of 13 years spread over several children, does nothing more than reduce one person's life time risk of getting breast cancer.  It's not the same as, say, not smoking to prevent lung cancer.  Being thin, fit, young, and nursing does not mean one doesn't have to still screen and hope for the best.  Many women aren't aware of that.  When I was diagnosed, some ardent breast feeding person who was  touting breastfeeding as "preventative" had the gall to ask me if I had a family history, as if...whatever.  She said she was counting on nursing to "protect" her.  Idiot.  Simple stupidity.  Further proof that the USA sucks at math and mathematical reasoning.

Let's talk about long term survival.  We are aware that a lot of women survive for years.  Women are typically over 60 when they are diagnosed.  Let's face it, when you are in your late 60s or your 70s or older, "long term" takes on a whole different meaning than when you are in your 20s or 30s or 40s. 

And none of this takes into account the negative effects of cancer treatment on a person's general health.  For starters, cancer treatment can lead to new cancers.  We are all aware that radiation can cause cancer.  Cancer treatment often includes radiation.  There's a double-edged sword.   Better yet, there's the chance that treatment will cause heart, liver, or kidney damage.  The Tykerb I take now is black box labeled for liver damage, "sometimes fatal."  Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage.  My radiation treatments also got a part of my heart.  Isn't that swell?  Oh, yes, my lung, too, was radiated.  Heart, liver, and lungs!  Oh, my!

There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don't think most people are aware of this.  That to "survive" does not mean to "get better" and that life isn't always pink and rosy are not parts of awareness.

Yet, we are aware that there's a "cure" out there.  In fact, when it comes to breast cancer and pink, "awareness" seems to be synonymous with "cure."  However, one would think that if an organization were really, truly concerned about a "cure" their money and focus would go to what...awareness/education? or research?  prevention or parties? I'd like my money to go to research and prevention.  Check out these charts to see where it really goes.

Just so you are aware.


suzee said...

Thanks. I was aware of some of that, but not all.

It sucks. I'm sorry this is happening to you, sorry that it's happening to anyone. Keep telling us about it, please.

Dennis Pyritz, RN said...

Dawn, Great Post! I am republishing it today at Being Cancer Network. I have included two links to your site so you may see more traffic. Keeep up the great work!
Take care, Dennis