Facing the factsPosted: October 9, 2011 Filed under: breast cancer | Tags: cancer recurrence, fear of cancer recurrence, National Breast Cancer Coalition, Oncotype DX, postaday2011 12 Comments
I get a daily email with a breast cancer truth every day. Daily. Every day. Like when someone says 8 a.m. in the morning — daily every day. Today’s truth was about the rate of mortality being higher for African American women. I’m not African American, but I read the details anyway, because anything having to do with breast cancer has to do with me.
The emails come from the National Breast Cancer Coalition, and there are some interesting facts. Well, interesting to someone whose life has been affected by breast cancer. I’m unfortunately in that camp. Boo. I don’t want to be in that camp, but I can’t unring that bell. No one asked me what I want, sadly. Once you’re diagnosed, no matter how much you fight it or try to ignore it or don’t want it, you’re in that camp. So ya gotta deal with it, and one of the ways I’ve dealt with it is to immerse myself in fact, figures, and information. Not saying that’s the right way for everyone, because I know some people like to stick their head in the sand. I’m not judging the ostriches, just saying that they do in fact exist.
Because I’m not an ostrich, and I feel the more info I have the better armed I am, I like all the facts, figures, and information. Even the scary parts. I tell my doctors all the time, just give me the info, including the ugly stuff. I can handle the hard truths, I just need to know that I’m dealing with. I do much better having the information. Like the statistic that says 65 percent of those diagnosed with breast cancer will have a recurrence. It’s scary, but I like knowing it. I need to know it. For me, the unknown is much scarier. The permutations my wild imagination comes up with are way scarier than the actual facts.
I fully expect a recurrence.
Not because I’m looking for the Grim Reaper or because I’m negative — neither of which is true — but because I’m realistic. Being diagnosed at age 40 with what was for me my second cancer (melanoma was the first), I fully expect to have to face this beast again.
With both the melanoma and the breast cancer, I got off easy, relatively speaking. The post-mastectomy infection gave me a run for my money, but the cancers were easy to treat; the surgeries were awful but temporary. Man, that infection was a bitch. Who’d have thought it would be worse than the cancer and subsequent treatment? But it was.
But back to recurrence.
I fully expect it.
In fact, I recently mentioned that among a small group of my besties and was met with utter silence. Not one person piped up to say, “Nah — you’re crazy. You beat it and you’re done. Nothing to worry about.”
Chirp, chirp, chirp went the crickets in the abysmal silence of no one sticking up in disagreement with recurrence.
I’m no fool. I know that having one cancer puts a person at a much higher risk of contracting another type of cancer (exhibit A: melanoma >> breast cancer). I expect that it’s coming. At some point, at some time, it’s coming. I can do the math and know that I will spend more years fighting cancer than I’ve been alive. That’s one of the many things that just plain sucks about being diagnosed young. Or young-ish, in my case. Yes, there are tons of people who are much younger than I was at the time of diagnosis. Hell, some of them are even kids. Little bitty kids, fighting a big, nasty disease. Plenty of people are young, not young-ish, at the time of diagnosis. And they will spend even more years than I fighting the disease.
I had a fancy test shortly after my diagnosis, to identify the characteristics and risk factors of my cancer. The Oncotype gave very specific and very personalized information about my cancer. The test looks at a group of genes (21 genes total: 16 cancer genes and 5 control genes) to see what their activity level is. This test provides additional information — beyond the usual standard measurements such as tumor size, grade, and whether lymph nodes are involved — to give each woman a score that correlates to how likely it is that her cancer will return. The idea is to help make decisions on cancer treatment (chemo? no chemo? if so, what type and for how long?). Very useful information. Expensive (nearly $5,000) but useful.
My risk factor for recurrence of this same cancer, according to the Oncotype, was low. Really low. Single-digits low. But that’s little consolation to me. It’s nice to see that low number on the report, but I’m no fool. I know how haywire cancer cells can be, and how one cancer cell is all it takes to wreak havoc in one’s body.
I think it’s safe to say that most people who have stared down cancer think about recurrence. I remember wondering how in the sam hell I would ever get through what was the worst thing in my life, and once I was through it, thinking how nice it would be to consider myself done, but no, there’s the thought of recurrence. I think about it every day. Even after everything I’ve been through.
Every single day.
The current pinkwashing that permeates every October gives the impression that once you fight your cancer battle, you’re done. It’s a glamorous, sexy disease, wrapped in blush highlights and tied in with lots of fun products, all wrapped up in a cute pink ribbon. Sure, you may lose your breasts and your hair, and you will most likely gain lots of weight from the hormone therapy necessary to fight this bastard. You may lose any shot at positive self-esteem and a happy body image, and your life will never be the same. You may well make yourself crazy with the wardrobe challenges involved in dressing around a mastectomy and reconstruction, and you may well be bankrupted from the surgeries and treatments (even with good insurance), but once you’ve slayed that beast, you’re done.
If only. You are beating the beast with what you are doing every day. It’s not about the recurrence it’s about what you do with the time in between. You beat the beast every day you take joy from life instead of accepting sorrow from disease.
Oh, my friend, I wish I could talk away the stats, but instead I’ll just say that I’m glad you’re being practical. Knowing what you’re up against is much smarter than turning a blind eye and pretending that nothing is wrong. You’re so wise, brave, and so, so f***ing strong for facing the facts the way you are. Keep going, girl.
Done? With breast cancer? Right…. So glad to find someone who thinks like I do: Odds are it’s going to come back. Everyone around me says the same thing your friends and family say to you. “You have no reason to think this.” “Its been cut out of your body, and you’ve had chemo.” I’d like to be Pollyanna like they are, but they haven’t read the statistics like you and I have. I’d raise a glass and toast to no recurrence, but since alcohol’s liked to recurrence… Somehow milk and water’s not the same.
This post made me cry. I wondered if I should have fed into my husband’s mother’s pink-badge-of-courage? She definitely had it. Got it from friends and TV. I feared for the worst. Knowing what I know now, would it have hurt anything to go along? Not sure how I feel, but I suppose that if it helped them prepare, I was helpful. Otherwise, I was just a nay-saying ninny. I guess we all must force ourselves to look at the positive and try to become the smaller of the statistics, even if by sheer willpower. I think every effort counts. By the way, statistics suck BIGTIME.
I love this post. You just stared something in the eye I have been too afraid to look at head on. And you guided me through it with pluck and resolve and wisdom and level headedness. My favorite of your posts ever girl. well done, very very well done. The last part too, oh my. bingo.
Well said, Nancy. It’s better to face the facts than to be in denial. I had a recurrence of my breast cancer eight years ago and am still here to tell the tale. I still ponder whether I will get another recurrence, but since I’ve been through one I feel like I can face it again. Whether I can or not is another story, for sure. I’ll know if and when I get there. Keep on keeping on.
I agree with you. “The truth shall set you free” trumps “ignorance is bliss.”
I feel ya! Worry about cancer coming back after having it at 37 scares me each and every day. I lost my mom when I was 12 and she was 38. I was dx at 37. My Dad just died this year from cancer. I hate cancer. I am so tired of worrying about it coming back. I asked to take the Onco test and I was told “i didn’t need to have it because I would be on the high end” because of my family history, my age and the fact that I am HER2+++. No need to do the test??? That doesn’t give one a warm fuzzy. Even though I wasn’t sure about it I applied for the retreat at Lakeway. Any chance you are going?
You are a brave woman.
[…] a deadly disease? Where’s the pink iTunes gift card to buy some relaxing music when the fear of recurrence grips […]
[…] I think about recurrence all the time. As in, at least once every day. Not in a wringing my hands kind of way, but in a “this is my reality” kind of way. I’ve done my homework and I’m very realistic. I would be surprised to skate outta this life without cancer yet again crashing my party. […]
[…] cancer survivor won’t feel comfortable assuming, ever. As I’ve written about here and here, “cured” isn’t something I consider. To me, “cured” connotes a […]