Reconstruction is not a boob job and other scary stories

31 Oct

October has been a bit of a crazy month for me. I had my second reconstruction surgery at the end of September – followed by a couple of post-op complications – so for weeks, I’ve just been trying to bootstrap my way off the couch and back to normal life. But since it’s Breast Cancer Awareness Month – aka Pinktober – I’ve also been busily cranking out essays and stories about the crab monster and the various ways it messes with our lives.  

Two of those essays went live today.  The first, for TODAY.com, is about how Reconstruction After Breast Cancer Isn’t a Boob Job. Anybody who’s been down the long road to recon knows this (and how), but there are still many people who think reconstruction is something that’s done as simple day surgery in a plastic surgeon’s office. Breast cancer? No problem! Here are your new magical boobs!

For all of those people who think building new breasts is as easy as baking a cake and all my BC sisters who’ve been through hell and back just to regain what cancer stole from them, a few thoughts on the subject:

It’s been nearly a month since my last surgery and the new girls are still a little scary looking. Righty’s recovering from a post-op infection that had me in the hospital on IV antibiotics for two days. Lefty’s missing most of her nipple, a casualty of my first surgery back in May.

They’re bruised and bandaged and look a bit like they’ve been in a bar fight. But they’re mine, thanks to the wonders of breast reconstruction surgery. Or as it’s popularly known, my “free breast cancer boob job.”

I’m being sarcastic, of course. Only a fool would confuse breast reconstruction with a boob job, but sadly, there seem to be a lot of fools out there.

I should know; I used to be one of them, until a radiologist uttered those three little words that have made such a difference to so many peoples’ lives: You have cancer.

After that, everything changed, including my understanding of what women have to go through to get their girls back. And trust me, it’s not easy and it’s not quick.

Unless you’re lucky. Or Angelina Jolie.

And here’s a link to the full essay.

The second piece, written for the Fred Hutchinson Cancer Research Center’s website, doesn’t specifically focus on breast cancer. In fact, many of these tips could apply to anyone diagnosed with a debilitating disease. It’s on 8 Things You Shouldn’t – And Should – Say To a Cancer Patient.

As always, I’d love to hear about your experiences, either with reconstruction or cancer comments that have left you speechless. Sorry for the short post but as I said, this month is crazy.  And it’s not over yet – today’s Halloween! Take care and thanks for the read, my friends.

27 Responses to “Reconstruction is not a boob job and other scary stories”

  1. Jan October 31, 2013 at 4:21 pm #

    Yes… a long slog, but (eventually) it passes. I too opted for a double-whammy in 06/07 (one needed, the other profelactic) and am going in December for more re-reconstruction. In this case, for a fat-transfer method at the Miami Breast Clinic byt Dr. Khouri to remove the implants. Some of the problems mentioned such as ripples and folds, and others not…. not they get very cold in the winter… kind of like wearing two icepacks!

    If you want to do a story on nipples…. please got to http://www.whitetigertattoo.com and scroll to the bottom for the pink ribbon. She does THE most amzaing nipple tattoos. No surgery. Looks real(really). And no need to have a permanent nipple-bud stikng out. Which sounds nice to start, but I’m told is a pain to have to wear a bra all the time.

    Best of continued good health and healing to you.

    • singleshot1 October 31, 2013 at 5:03 pm #

      Thanks for the nice note, Jan, and for sharing info re the micro fat grafting and nipple tattoos. I’ve interviewed Dr. Khouri before (and many of his patients) and am actually doing the whole Brava/fat transfer thing up here in Seattle. It’s definitely a slog, but at the end of it, I’m hoping to have natural looking/feeling breasts without any more invasive surgery and/or implants that are not only cold in winter but require swapping every few years. But you never know what the future will bring, right? Breast laid plans and all that. ; ) Take care and good luck with your forthcoming surgery!

  2. George B. October 31, 2013 at 4:25 pm #

    You go girl.
    My wife had breast cancer 15 years ago, and had breast construction just a few years ago. It was a hard decision for her too. I told her whatever she decided I would encourage either way. It is about being complete. I told my wife that you are as beautiful as you believe you are. God does not make any junk. Beauty is how you perceive it….
    P.S. Respectfully speaking, you are attractive, probably in more ways than one.
    Kudos,
    The G. Man

    • singleshot1 October 31, 2013 at 5:07 pm #

      Thanks for the nice note, George, and for sharing your wife’s story. It’s always heartening to hear about someone who’s made it 15 years past an initial diagnosis. And good for her for going forward with her reconstruction. It’s definitely about being complete for me, too (as well as spitting in cancer’s eye). I’m very thankful recon was still an option for me even with the radiation. It’s not for many women.

      • George B. November 1, 2013 at 12:38 pm #

        I know what you are talking about when it comes to chemo and radiation. Shortly after my wife’s reconstruction I got colorectal cancer. Go figure.
        “Spit baby spit” your earned privilege. Keep the faith, and move on. Make your tomorrows better.
        GB

  3. Joan E Seda October 31, 2013 at 5:13 pm #

    Great job as usual!!!! You have such a gift with putting your experience into understandable words!!! Yes, people need to realize that ‘reconstruction’ isn’t about making the perfect boob!!!!!
    Love and kisses
    J

    PS Go Eat some Halloween candy!! :)

    • singleshot1 October 31, 2013 at 5:16 pm #

      Thanks for the note, Joan, and for all the support/info you’ve sent my way. What would I do without my BC sisters?

  4. Susan Vivona November 1, 2013 at 5:35 am #

    My daughter just sent me your wonderful editorial! Boob job, my eye… I am 14 months past the “swap” and after chemo, radiation, three surgical procedures I’m still not sure the recon was worth it. The implants (they’re not breasts) are uneven, ripply and still pretty uncomfortable.

    • singleshot1 November 1, 2013 at 9:47 am #

      Thanks for writing, Susan, and so sorry to hear that you, too, have gone through a whole lot of pain and anguish for a pair of implants that are uncomfortable and uneven. I don’t know if the discomfort gets better over time or if we just get used to it. Or if something like physical therapy might help (any BC sisters have any thoughts on this?). Whatever the case, best of luck and thanks for adding your voice to the mix.

  5. Judith Chandler November 3, 2013 at 6:45 pm #

    Hey Diane – just finished your two new essays – I love how kick-ass and direct you are! I hate essays from women who gush oH! cancer what a gift. ( A box of poison snakes is a gift the big C –NO!) Stay strong – and call me for anything – drinks, housecleaning, a ride to my place to see the dogs and ponies – whatever, stay strong and don’t let the dumb asses of the world get to you.. Love you lots!

    Judith

    • singleshot1 November 4, 2013 at 8:17 am #

      Love you, too, Judith! Thanks for the read and the lovely note. XOXOXO,

      -d

  6. Rocket Woman November 4, 2013 at 10:04 am #

    I just now found out about your blog, Diane, and have enjoyed reading your posts. I had my first mastectomy (right breast) when I was 30 and newly married. I was not required to have treatments, but I was so thin that I had to wait a year before I could have reconstruction. Those were not good days. At 44 I had my second mastectomy (left breast) with immediate reconstruction. I have always been disappointed with that one – ripples, difficult healing, discomfort. I’m glad you have a good sense of humor, especially since you’re still facing more surgeries. I opted not to have nipple reconstruction. I just wanted to go ahead and get the 6 months of chemo over with. I was very brave and positive for about 2 years, then I kind of collapsed. I had been pushing through, taking care of our young children, my husband, and working. My oncologist was wonderful – referred me to a shrink (lol) who helped me. I am now 61 and have, of course, gained weight – no estrogen supplements for me! My advice to all is to have your “new boobs” made quite a bit larger than they used to be if you can. I hate looking disproportionate. I hope that your discomfort decreases in time. After a couple of years, I no longer felt uncomfortable on my right side, but I’m always uncomfortable on my left. I avoid wearing a bra whenever I can. Can’t find one that doesn’t drive me crazy! I wish you all the best!!

  7. Renn November 4, 2013 at 11:05 am #

    SO much goodness in this post! Am retweeting. As one who came from the prolonged-recon camp, thank you, thank you, thank you for writing the honest truth.

  8. Susan Vivona November 4, 2013 at 2:23 pm #

    I too avoid wearing a bra but sometimes need a bit of coverage for the scar tissue. Gap makes a very soft Demi bralette made of micro fiber that is pretty comfortable. It’s available on line and comes on four colors. I hope this helps.

    • Rocket Woman November 4, 2013 at 3:40 pm #

      Thank you, I’ll check it out. Hopefully, it has padding!

      • singleshot1 November 4, 2013 at 3:56 pm #

        Thanks for the lovely note, Rocket Woman, and I’m sorry to hear about all the grief you’ve been through. Regarding bras … I’ve had a lot of luck with Coobie style bras, both the one-size-fits-all and the full size (lots of colors to choose from). There’s no underwire, so no rubbing against tender skin — or adhesions. And they have built in padding if you want it (and a pocket where you can supplement the padding if needed). I used to tuck my regular and “sport” prostheses in the pockets (along with the triangles of fabric). Now I’m just using the “triangles” and nothing else.

        Hope this helps. Thanks again for writing and all the best. Also, it’s so wonderful to hear from a 30-year breast cancer survivor!

  9. Rocket Woman November 4, 2013 at 6:13 pm #

    Thank you for the bra tips. I was so happy to have a venue to express myself that I didn’t think about the fact that I was being fairly negative. Even after all this time, it is still a daily downer to look in the mirror. Sorry! I know that I am very lucky to be a long time two time survivor.

  10. coffeemommy November 5, 2013 at 2:29 pm #

    Just about to start the recon journey…
    Since I’ve followed the Tweets, I know this has been a long difficult process for you. I’m watching, learning and grateful that you (and others!) are sharing your experiences.

    • singleshot1 November 5, 2013 at 3:55 pm #

      Yes, it has been a long, difficult process. And I’m doing the “less invasive” micro fat grafting route. I have to remind myself (often) that I’m not going to have Frankenboobs (or a Frankenbody) forever. Just as the scars from the original double mastectomy healed, just as my radiation burns went away and my hair grew back, the puncture marks on my legs and stomach will fade. Ditto for the bruises on my new girls. The skin is already looking much better on Lefty (Righty’s still recovering from the infection). Keep me posted on what kind of recon you decide to do and how the process goes for you. I’m happy to share tips and I know many BC sisters will, as well. It helped me a LOT to think of my reconstruction as treatment. Just like chemo and radiation, it’ll take time, it’ll knock you on your ass for a bit, but it will be over at some point and you will recover. Much love and #FUcancer. -d

  11. Amanda November 7, 2013 at 11:30 am #

    Thank you so much for sharing your journey, it is wonderful to hear that I am not alone! Just going through the stages of NAC and tattooing now, but had to deal with capsular contracture and now I’m looking into a 2nd opinion.
    Eternally Grateful,
    Amanda
    http://www.canadianpaleochick.blogspot.com

    • singleshot1 November 7, 2013 at 12:37 pm #

      Thanks for the lovely note, Amanda, and best of luck with the nipple/areola tattooing and the capsular contracture. Don’t know where you are, but I’ve actually heard from a couple of nipple tattoo artists. One gal from New York – Cathi Locati – refers to herself as an “areola architect” and was written up in http://www.thehairpin.com. Maybe a good resource for you? Take care, stay strong and thanks again for your note.

      • Amanda December 3, 2013 at 9:03 am #

        Wow thank you!! See without each other we would not have any of this information, keep blogging and inspiring us girl!

  12. bethgainer November 9, 2013 at 5:44 pm #

    Yes, I’ve had the so-called “boob job” on both breasts and I’ve endured hell with all my treatments. It is not a walk in the park like so many people wish to believe. I’ve had people envy me for getting the “boob job and tummy tuck” at the same time. What a nice figure I have. Ironically, I often feel disfigured.

    • singleshot1 November 9, 2013 at 6:01 pm #

      Reconstruction is more like a walk in a park where you get mugged and beat up and end up in the hospital with a broken arm which promptly gets infected and never quite works right again. Sigh. So sorry you’ve endured the hellish treatments, the painful recon and the ignorant comments from the clueless masses. At least we have each other. And our health (except for that whole cancer thing). ; ) Take care, thanks for popping by and appreciate your input, my friend.

  13. bethgainer December 12, 2013 at 8:21 am #

    This is an excellent post that tells it like it is. Reconstruction is NOT a boob job. I wrote about my reconstruction experience in the following post. http://bethgainer.com/going-off-the-diep-end/

  14. lisandracole December 12, 2013 at 6:21 pm #

    I’m so happy I found this post! I’m 23 years old and had a double mastectomy with expenders put in on Monday. I never end enjoyed my b cups before they were taken from me. All my friends are excited that I’m going to have a “boob” job and have nice full perky boobs.This morning I woke up with nausea and one expander swollen. After rushing to the hospital, I was sent home on more pain meds and a limited diet. No one understands that this is NOT a boob job. I look down at my chest and see lumps and bruises and no nipples. I think thats what hurts the most. I will definitely be sharing this blog with them. Its hard to explain to 20 year olds that reconstruction is NOT a boob job.

    • singleshot1 December 12, 2013 at 7:58 pm #

      Thanks for the note, Lisandra, and I’m sorry to hear about the double mastectomy and the issues you’re having with the expander. Sounds horrible and the fact that your friends don’t get it just makes it worse. I remember how devastated I was when I lost my “girls” back in April 2011. I wanted immediate recon at the time but my surgeon advised against it, in case I needed further treatment. Which I did. (Losing hair was no picnic, either, but that grows back.) Finally, almost three years after diagnosis, I’m going through reconstruction. It is not an easy road and you and I are both sort of halfway down it. Yes, it’s shocking and upsetting to look down and see bruises and lumps and weird swelling. And yes, it’s horrible not to have sensation or nipples, either (I did nipple sparing but lost my left one during my first recon surgery this last May). BUT … you just have to keep moving forward. The bruises will fade. The infections will clear. The nipples will be reconstructed and tattooed. You won’t look the same. You won’t be “good as new.” But you’ll be here and whole again and there will be days that you’ll actually forget that you had cancer and went through this crap. Trust me, human beings are very resilient. Thanks again for writing and please feel free to share my post about how a breast cancer diagnosis does not mean you’ve won the boob lottery to those who are too young and naive to understand, bless their clueless little hearts. And big hugs to you as you continue down this lousy road. Keep me posted and all the best, sweetie. -Diane

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