Friday, October 23, 2009

(Don't) Say (Just) Anything

Inspired by this post by young survivor Marika Holmgren over at the HuffPo, In Honor of Breast Cancer Awareness Month, Top Ten Things Young Survivors (Probably) Don't Want to Hear, I put together this list. Enjoy.

Top Ten Things Young Previvors (Probably) Don't Want to Hear

10) But you're so young!
Well, I'm staring down the big 3-1 next week, so I don't really think I'm all that young any more (but not yet middle-aged... didn't Britney Spears write a song about that?), but all that is beside the point. Young women do get breast cancer, and young women with the breast cancer gene, especially, get breast cancer. In fact, recent studies suggest that women with BRCA mutations are getting sick an average of six years earlier than the previous generation. So we're never to young to get breast cancer.

9) Well, if you get breast cancer, at least it's curable.
This impression that breast cancer is somehow the "good cancer" to get befuddles me. Have we really sanitized the disease so much with all the pink ribbons and smiling bald ladies in ads that breast cancer has just become a woman's right of passage? Breast cancer changes lives. And breast cancer ends lives. I'm not sure why we've forgotten (willfully ignored?) this inconvenient truth. And unless I missed the headlines, there still is no cure for cancer. What's more, women with BRCA mutations who have had breast cancer have a 40% chance of recurrence and an elevated risk of developing second primary cancers. In other words, breast cancer isn't like chicken pox, folks. You don't get it once and are immune to it forever.

8) You're removing healthy body parts that may never develop cancer. That's crazy.
To you, maybe. But to me, it's the opposite of crazy. It's totally sane and rational. I have a nearly 90% chance of getting a disease I know I can prevent if I have this surgery. What's crazier, getting it when you didn't have to or not getting it because you had surgery? I'm going to go with what's behind door number two, Monty.

7) So wait. If I was told I had the brain cancer gene, I'd have to remove my brain?
Are you sure you haven't already? No. You would not remove your brain. Because you need it to live. I am removing my breasts because I can live (both figuratively and literally) without them. No, I won't be able to breastfeed, which is evolutionarily their only function. But my future children will survive and thrive on formula. Lots of people weren't breastfed. And they turned out fine. My kids will be, too.

6) That's not what I would do.
You are free to think that, but I don't want to hear it. Truthfully, you-imaginary-person-who-doesn't-have-the-BRCA-mutation, I don't really care what you would do. Because you don't know what it feels like to be me. So zip it.

5) What if you have the surgery and then die of something else?
Well, that's the point right? Not to die of breast cancer? I don't know how long I've got, but I'd like to spend my time here without breast cancer.

4) Look on the bright side, you're getting a free boob job!
Reconstruction does not equal a boob job, folks. Enough said.

3) I always hated my boobs. You're lucky to be getting rid of them.

I know lots of women out there have vexed relationships with their bodies, and there are parts of mine (armpit fat area, I'm looking at you) that I hate. But my boobs are not one of them. I really like my boobs. They were totally unexpected additions to my life. I lived until age 21 without ever needing to actually wear a bra. And then suddenly, I needed one. A lot. And part of me is still that desperately flat-chested, square torso-ed boy-shaped girl. So when I see these womanly mounds on my body, I do a silent little touch-down celebration. Because I wanted them for so long and they finally arrived and they are beautiful. So, no, I'm not lucky to be getting rid of them. I'm lucky for the time I had with them.

2) You should do [insert healthy lifestyle choice]. I hear that helps prevent breast cancer.
Well, if we knew how to prevent it, no one would get it, right? I hate to be so pessimistic, but, especially in women with BRCA mutations, all of this healthy-lifestyle-doing-yoga-drinking-green-tea-taking-vitamins seems like titling at windmills to me. But, I'll play along. So, to prevent cancer I need to be healthy. But I already am. Vegetarian? Check. Runner? Check. Yogi? Check. Non-smoker? Check. I'm doing all I can here, folks. I'm staring down a 9 in 10 chance of getting breast cancer. I wonder really what difference it makes if I forgo that Diet Coke or glass of white wine.

1) Don't do anything drastic yet. There will be a cure soon.
I sincerely hope you are right. And I sincerely hope that in five, ten, twenty years, prophylactic mastectomies for high-risk women will seem as draconian as blood letting. But I'm not going to stand around idly and wait for miraculous medical advances. I'm doing the best with the technology and understanding we currently have.

Top Ten Things Young Previvors (Probably) Want to Hear

10) Is there anything I can do? Do you need a ride anywhere? Wanna grab a drink?
9) I'll be there for you.
8) Good for you for doing what's right for you.
7) I don't want you to get breast cancer, either.
6) I don't know what it must feel like to be going through what you are going through, but I know it sucks.
5) Talk to me. I'm here to listen.
4) When you are recovering from surgery, I'll come over and watch DVDs with you, wash your hair, and bring you vegan junk food.
3) You are brave.
2) You are strong.
1) You will still be beautiful.


  1. Great post. Your boobs are in fact awesome, I and my flat chest must admit, and I'm sure your new ones will be great too. But your beauty is transcendboobular, of course, and you'll be a hot mama even when we're all sitting in a nursing home with afghans over our laps, having flashbacks and complaining about the government. You ARE strong and you ARE brave and you ARE doing what's right for you, and I hope you haven't really been hearing all those idiotic things, at least not too much. Shame on anyone who would say crap like that.

    Love you.

  2. Thanks, Sooz! Love you right back. XOXO

  3. Excellent post!!! You put words to all of my feelings. Can I send it to people? (w/ your copyright for sure) - or put it on facebook and I'll "share".
    Julie G

  4. Julie -- Go ahead and share it/Facebook it/tweet it/skywrite it. I'm honored you want to pass it on :)

  5. Steph - Bravo! Bravo! This may have been my favorite post of yours yet. As a fellow mutant, I relate to everything you said & I absolutely love it and found myself nodding my head in agreement as I went through your list!
    Great job!!

  6. p.s. I'm sharing this on my facebook page as well - I really couldn't have said it better myself (though I sure do try!) :)


  7. Steph!

    I will share it on FB also, it is great.
    I am glad you found all those blogs!


  8. Fantastic! I love this. I'm going to share this on FB too. I can't tell you how many people got "into" my business when all I really wanted was someone to come alongside me and let me cry or just hug me...saying nothing at all even...
    Sister - BRCA 1

  9. Another fellow mutant here and I loved it too! I want everyone I know to read it so I don't have to keep answeting all the questions they ask! Well done - I couldn't have said it better myself!

  10. how about 11)do you need a catsitter? :)

  11. You certainly summed it up beautifully. Luckily my friends' comments all came from the second list - I'm guessing that anyone who would have commented from the first was kind enough to keep their thoughts to themselves! And, your post applies to older previvors, too! Good luck with your surgery.

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  13. Excellent!! In the face of the crap that goes with BRCA positivity - you have to just say it how it is. We make choices and we have to justify them.

    Like I always say to people...if the captain of the plane you were flying in announced that there was a problem and it now had an 85% chance of crashing..what would YOU do? Really...imagine it. Grabbing a shute yet??

  14. I've had a lot of those comments we don't want to hear too. One said just be glad you're still alive and forget it!!

  15. Awesome! I will as mentioned publish it on the next Canadaian Network News.

    As I head towards my own surgery this validates to me the feelings I have had

  16. Steph,

    I love this! You manage to say just what I'd like to say but can never seem to do quite as eloquently. Mind if I link to this post from my blog?

  17. Steph,
    Great articulation to us ignorant family members that didn't know about the BRCA gene mutation. I guess this was a funny way of Sis-in-Law letting me know how dumb it sounded when I asked why she would prophylactically remove her breasts and other female body parts? She quickly gave me a DVD and on it was the PBS documentary about the BRCA gene mutation and it set me straight! Now, I tell every man and women I meet about her plight and the severity of the BRCA gene. I am amazed how many people do not know about the BRAC gene mutation. With growing information out there and now a TV commercial on BRCA, I hope it will help to educated us dummies on this serious issue. Good Luck and God Speed..... SA's NRA Nut!

  18. Beautifully argued.

    As someone who has had breast cancer a year ago(albeit I am a bit older than you), and watched family members die of it too, and is also going through the process of BRCA gene testing, I understand all the arguments for preventative surgery. In January I am going one step further and am having a total hysterectomy, and oophrectomy too to keep myself safe from secondaries, or new primaries in those places.

    My biggest fear is discussing the issues with my beautiful 20 year old daughter should my BRCA tests prove positive.

    Just wanted to say I admired your spirit, and the great way you have put the issue out there for all to see; too often its hidden behind closed doors, and people either seem ambivelent or apathetic about how seriously cancer effects lives, and that there is yet no cure.

    Being in remission, isnt the same as cured, it just means they cant see any cancer cells at that point in time. Its like a great axe swinging over your head.

    Well done - You Go Girl!


  19. Hi Steph - I just found out I am positive for a BRCA 2 mutation, and I came across your site while looking on the FORCE message boards. I just wanted to say that your list here sums up my feelings better than anything else I have found! I have read a bunch of your posts and will keep reading... you are a wonderful writer and reading your words helps me to know that I am not alone in all this. Thank you so much for your bravery!

  20. Hi - just got my BRCA2+ results on Friday, found your blog via the FORCE boards Friday night. Haven't had a chance to read much yet, but oh, how this post speaks to me! I'm laughing, nodding, crying. I will be reading a lot, and definitely linking back to this as I share with family and friends!

  21. This is the best thing I've read in ages and I realize it's an older post, but I HAD to comment and say THANK YOU! I've been told almost all of the "not to say" things IN THE PAST WEEK since receiving my results. I want to send this to everyone I know (and as a bonus, it made me laugh! Which is awesome!).