The Surgery Which Must Not Be Named
August 7th, 2011
The date is now set for the first of my reconstructive surgeries. As has been my custom, I sent out a dispatch to my support people to inform them of the date and some of the needs my family and I will have.
But you know what I forgot to include?
What the surgery was for.
I got some concerned notes from friends, wondering if I had experienced a recurrence or morbidity from earlier surgeries. Was I BRCA positive? Was this an oophorectomy or hysterectomy?
As regular readers of my blog know, I usually lay things on the table medically. I am not typically coy about what goes on.
This omission was interesting. Why had I suddenly become so uncharacteristically shy?
Blogger friend Stacey has written about how awkward it is to discuss reconstruction –– sometimes even with your doctors.
Luckily, I have felt very comfortable with my docs.
Family, friends, and colleagues… well that’s a different matter.
Part of it, I think, is that people are not as presumptuous about the “correctness” of other phases of cancer treatment. When you tell folks you have to have chemo, the skeptics may, at most, ask if you had a second opinion. But once you assure them of your diagnosis, they only offer sympathy.
Breast reconstruction becomes infused with opinion. Political opinion. Medical opinion. Cosmetic opinion.
While not everybody states their views outright, they find ways to insinuate them into conversations.
I am familiar with this dynamic. It reminds me most of the kind of indirect (and sometimes quite direct) judgments I felt in conversations about childbirth and breastfeeding.
For this reason, I am going to provide here my personal answers to the FIQ’s in conversations about my choice to pursue reconstruction.
What are FIQ’s?
I just made them up.
Frequently Insinuated Questions.
So here goes.
Why don’t you just embrace your new body?
Yes, this is the body that let me live. But it is also a body of trial and grief. It is a body that reminds me of what I have endured every time I dress and undress, every time I wear a swim suit, every time I hug. My happiest post-treatment moments are ones that do not foreground my cancer experience. I would like to have more of that pleasant amnesia around my body itself.
I have been told by more than one person about women who embrace their mastectomied bodies by tattooing their scars. Cool on them. When people stare at you, you have given them something to look at, have changed the meaning of the stare into, “What an awesome tattoo.” I think that’s great.
But it doesn’t work for me. Aside from not being a tattoo person, I am not a candidate for tattoos, between the extensive radiation and the lymph node dissection which leaves me prone to infection. I sometimes get the feeling that I disappoint people by not being a badass tattooed survivor.
Why would you want to endure more surgeries?
I have my reasons. Of all three events in the Triathlon from Hell — chemo, surgery, and radiation — I tolerated surgery the best. It seemed to be the one place where my prior fitness paid off.
I don’t want to endure more surgeries. But cancer often forces you to choose between crappy options.
The best preparation I have had for this aspect of cancer treatment is a game I played with my brothers growing up. We would pose gruesome hypothetical scenarios and ask each other to justify our choices, like, “Would you rather freeze to death or be burnt alive?”
Other women may not experience it this way, but for me, choosing between my mastectomy scarred body and more surgery is one of those would you rather scenarios with no right answer. Choose your pain: the accretion of small psychic insults for the rest of your life, or intense, short term suffering for a physical approximation of what you have lost. On the balance, my personal answer, after much self reflection, is that I would rather endure 9 months of surgery.
I do not judge other women for making different decisions. I wish I did not feel judged by others for my choice.
Why didn’t you just get reconstruction when you had your mastectomies?
If I had insisted, I could have. My radiation oncologist told me clearly that it would risk compromising the treatment and it would make for a lesser cosmetic outcome. My priority during treatment was to save my life. I figured I would deal with the cosmetic aspects at a later point, once I knew that is what I wanted to do.
The surgeons at my hospital recommended waiting 12-18 months for my tissue to heal after radiation. Delayed reconstruction has been psychologically hard, but the morbidity rates are lower than reconstruction on radiated skin. In some ways, it has given me an opportunity to live with a mastectomy body and have a clear sense of my own feelings about that. I will not have to wonder how it felt.
Are breasts really that important to you?
Growing up, I had a friend who was born with noticeable asymmetry in her face. Nobody questioned her and her family’s decision to get plastic surgery for her when she got old enough. Faces are part of how you present yourself to the world, how people see you and interact with you.
Later, my friend Josh had part of his arm removed to treat sarcoma. He wore a prosthetic initially, but found it cumbersome and finally decided to let everybody deal with their discomfort around his missing body part. He used humor to help put people at ease, like about the particular danger he would pose if he texted while driving.
So where do breasts fall on the spectrum of body parts? Do non-conforming breasts socially require surgical correction, the way that we all understood my friend’s facial surgery?
I imagine breasts fall somewhere in the middle, and different women answer that question differently.
Here is where I land. I don’t like choosing my clothing around my surgery. I don’t like the extensive strategizing I end up doing when it comes time to change in the locker room. I don’t like the sinking feeling I get every time I undress, no matter where I am. I don’t like the feeling of cuddling my children with prostheses.
I have spoken with enough women who have made different choices to get a sense of the trade-offs. I have no illusion of “becoming whole again.”
But I have listened to other’s stories, and I have spoken with my doctors about the medical realities.
I know of a woman in her 40s who enjoyed swapping out different sized prostheses –– or wore none at all –– to suit her fashion choices and activities. I know a 90 year old woman who had a radical mastectomy in the 1970s who told me she never felt comfortable with her modified body. I know a small-chested BRCA positive woman who got prophylactic mastectomies without reconstruction and felt surprised at how much she missed having breasts.
There is no one answer here. But I would appreciate trust from people I know that this is the right choice for me.
This entry was posted on Sunday, August 7th, 2011 at 1:10 pm and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Lani,
I am so grateful that you are willing to be honest and open.
I want to say, for the record, that I hope I have never given you the impression that I think there is a single answer. I know with all my booby rants it might seem that way, but my intention is to fully support everyone’s right to make the decision that’s best with her. No booby orthodoxy here.
xoxo,
Katie
katie, i have never heard your booby rants in this way. i hear the nuance in your writing. i appreciate your note, my cancer twinned friend. xo
You said it better than I’ve ever heard. I am your cheerleader. Good for you!! As to your upcoming surgeries…will you share what kind of procedure you’ve opted for? DIEP, Tram flap, TE ‘s??? Wishing, hoping and praying for fast and easy healing..
thank you, holly…
i have been told by three doctors that i am only a candidate for lat flap. sigh.
i appreciate your support and good wishes.
Hi CB!
Loved this post! I too was not a candidate for any other option than the lat flap. Oddly, I got a LOT of grief over my decision to do the lat flap from women at a breast cancer support group. I believe they meant well, I know they did, but, I found it a little upsetting.
I had consulted with many surgeons, I did research, I am not stupid (at least I don’t think I am). So, since it was not the kind of support I needed at the time I simply stopped going. I knew for me it was the best decision. There simply is not a one-size-fits-all approach to reconstructive surgery (whether to have it, when to have or type) any more than there is a one-size-fits-all bra.
You will do great. I had a lat flap on both sides, I have one more minor surgery to finish things off (out-patient – so truly very minor). I don’t have regrets. And, thanks to inspiration from you and some of my other runner colleagues I am signed up for a 1/2 marathon for my next cancerversary . . . we’ll see how I do.
I will be sending lots and lots of positive vibes your way. Your fitness is going to help you so much, you will do great!
Lisa
wow. some support group!
good luck on the run. you will rock it, girl! xo
Do what you need to do and the hell with everyone else!!!
well then i might just go and paint my toes a crackling teal color! xo
I love your invention of the term “FIQ”! Good luck with your surgeries.
thanks shelli!
The next time somebody asks you if breasts are so important, you should voluntarily saran wrap theirs to complete flatness, and when they complain say “Are breasts really that important to you? You should embrace this new body.” That should solve that problem.
were it that simple… a lot of folks who have weighed in have been men!
maybe i could …
no, i won’t go there!
Interesting! I never questioned for even a minute my decision to start reconstruction when I had my double mastectomy (one side prophylactic). Part of my decision to have a mastectomy on the “other” side was for aesthetic reasons; having implants placed on both sides would achieve much better symmetry. I eventually found out that there were dysplastic cells on the “healthy” side so I am glad I opted for the surgery.
I had the common surgical track of tissue expanders/implants/nipple construction. There are pluses and minuses to all of the reconstruction procedures but not doing ANYTHING was never in the cards for me. It IS personal. I think that others pick up on the confidence you have about what you are doing. Yours shows, and your choice about whether to have reconstruction is one way to take charge in a situation when so much choice is taken FROM you.
It’s a big surgery and I wish you a smooth surgery and recovery. Those you encounter who don’t have knowledge about breast cancer may not understand all of the limitations that having radiated skin can pose on reconstruction. I hope that your surgery will give you the best possible results under the circumstances.
i think people understand more when you have immediate reconstruction: you are losing and replacing at the same time. i think it’s harder for people to understand when there is a delay.
thanks for your kind note, lisa.
Ditto Carey! You should be very proud of this post CB. I imagine this kind of raw honesty is going to help countless other women with their decision process. You are a wonderous soul. Rach xxxx
aw, my rach. thanks! <3
Love the FIQ’s!!! The point is that we have options, and we have a right to exercise the ones that are right for us. Great post, Lani. Informed consent is one thing, but I’ve seen too much ‘lobbying’ on all sides of this one. It sounds like you’re in good surgical hands & that’s what matters here ultimately. Hope everything goes smoothly. And yes, I have to say that you make and excellent point about recovery — if I had been given the full 411 from the get-go & been able to stop at surgery, I’d have been much better off. It was the “other stuff” that has caused me endless problems. And by the way, I think you’ve always been pretty badass.
we could probably make a list of general cancer FIQs: what did you do to bring this on to yourself would probably lead the list.
thanks for the nice comment, amazon! xo
For what’s its worth, I think you are doing the right thing. Medicine has progressed, why not embrace what it can do for you.
right. it’s the suffering and putting my family and friends and colleagues through another year of this… it weighs in. but yes on the balance, this is what is right for me.
I’m happy you have reached a decision as to what is right for you. I know what you mean about all the opinions out there on this topic. As with many things, some people are pretty rigid and judgmental, but who cares? As one who started reconstruction over a year ago, I just want to say it’s a long process no matter which path you take, so be patient. Good luck and thanks for sharing about such a personal topic. Thanks for including a link to my post on “wholeness” too!! I appreciate it!
*deep breath*
right, nancy. i noticed that between appointments with the surgeon, i had collapsed the timeline in my mind to make it more palatable. i realize that 9 months is sort of a best case, fast healing scenario.
thanks for the reminder, and thanks for all your contributions to this conversation! xo
had my first mastectomy in 09, second last March (separate, unrelated BC). 48 yrs. old. Honestly, I miss my big boobs, more than anyone will know. I make light of it, but i have daily cleavage envy. I feel like an outcast in many ways even though i have a wonderfully supportive family. I think I’m going to opt out of re-const. in spite of it all. just don’t know if I have it physically in me to deal with it. Your post hit home though, oh god how it hit home. Thanks for writing, it makes me feel less alone. good luck with your surgery doll <3
exactly. i can completely understand that. i feel like not only have i worn out my body through treatment, but i sense some compassion fatigue among the folks who support me. like, “really? you are having more stuff done?” when we go through these things, we put everyone around us through them as well. i respect your decision and give you a gentle hug for the daily grief. xo
CB: You have a wonderful way with words and cutting to the heart of the matter. From the “FIQs” to the ‘Would you Rather’s” I love your smart and honest essays. All the best to you in this next phase. – Gayle
thanks, gayle. i’m sure you’ll hear more before this process is through!
Right on, Lani. I can very much relate to your words regarding the judgement of other people when I mention reconstruction. I am opting to be in a clinical trial of fat grafting using the Brava. If I’m not happy I can get implants later. I was called “granola” and “Seattle” by one plastic surgeon because I did not choose to have implants right away, and laughed at by a friend who was uncomfortable with any reconstruction. It’s my private area, so who do they think they are?
wow, adrienne. just wow. those are pretty direct insults…!
you will have to keep us posted on how the Brava surgery goes. it seems like a great option. xox
You’re right – it IS hard to discuss reconstruction. It’s been almost seven years since my bilateral and four since my IGAP and just this week I stammered and blushed when talking surgery with a friend who is about to have his hip replaced. He knew nothing of my BC, so, i jad to explain what parts needed reconstructing. And after his eyes dipped to my chest (sigh), I had to blah, blah, blah about post-treatment life – y’know thw “i’m fine now” stuff. Hate that…
But good for you for doing your thing reconstruction-wise. It’s your body and you have to live with it. No point in doing that with parts you are uncomfy with. Glad you are doing what works for YOU.
thanks for helping me anticipate that this particular awkwardness will not go away any time soon!
Hey Babe,
All the best with your surgery.
Reconstruction wasn’t recommended for me so I remain unilateral.
I found the site http://www.breastfree.org helpful. As you hear from a wide variety of people with breast cancer, thought I would mention this resource.
Rock on
KOB
you remind us, katherine, that even having the choice is something. thanks for adding this resource to this post!
p.s. i hate breast cancer too, katherine. thanks for shouting it to the world.
Hi Lani,
I guess I don’t know what kind of reconstruction you are having? Is it tissue expanders, or a flap recon?
Anyway, I got some of those questions too, and was appalled. Why did people expect a vibrant young woman like me to live boobless when there is surgery that will help? No offense to those who choose to live breast-free, but that was not me and frankly, it was nobody’s business.
Anyway, no advice for you since I don’t know which surgery you are having, but I’m wishing you the best of luck! My recon isn’t perfect and they never can be, but I’m very happy I got it.
i am having the lat flap surgery + expanders. i talked with three surgeons and it’s the only kind i am eligible for.
it is so strange what people feel at liberty to weigh in on sometimes. i am comforted to learn that this is part of something more widespread, and that i don’t just live in a particularly callous part of the universe!
thanks for the note, ann.
Such a sensitive and insightful post CB – it is hard to talk abut this kind of surgery, and it is odd that we have to feel the need to defend our choices. (I discussed this when I found myself answering similar questions (http://feistybluegeckofightsback.wordpress.com/2011/04/12/discrimination-and-deconstruction/)and find that my own choice, still over a year after finishing the heavy treatment, is not to reconstruct.
I totally echo your final words of the post “There is no one answer here. But I would appreciate trust from people I know that this is the right choice for me”. That is the crux – only you know what is right for you. I will be thinking of you as you go through this next phase and trust that it will go smoothly and you will recovery speedily.
Big hugs
P xx
thank you, philippa. i completely understand and respect your choice. thank you for sharing your perspective too. i think it affirms how differently women can experience the same thing.
A follow-up thought: I think there are regional differences in how women repond to reconstruction. A women who lives where I do who opted NOT to have reconstruction (whether immediate or delayed) would likely be questioned (interrogated?) far more than a women who decided not to have any reconstruction at all. That is, there are parts of the conuntry where the question is more “which surgery are you having?” moreso than “are you having reconstruction?” The sociological analysis of differences is fascinating to me as well. Age, geographic location, etc. are factors which may affect the process.
i think you are right, lisa. adrienne was called “seattle” for delaying her reconstruction (see above).
i grew up in southern california but have lived in berkeley, seattle, and now nashville. i believe that the norms would be very different in all of these places. i imagine there would be some overlap in attitudes about reconstruction and attitudes about breastfeeding and childbirth.
reconstruction shouldn’t be compulsory, nor should women feel bad for doing it.
thanks for the insight.
Wonderful post. Isn’t it amazing how people have no shortage of opinions? You did a great job summing up FIQs (I love that term!) Another one I’ve noticed seems to revolve around horror stories about reconstruction gone wrong. It can and it does, but it can also go well. Mine did and I’m very happy with the results.
We’re all different. Our circumstances are all different. You made the choice that’s right for you. I applaud your choice and I wish you the best with your surgery. Thanks, as always, for sharing your journey.
thanks, jackie. <3
Hi Lani,
Awesome posting; I admire your candor and, like everyone, your FIQs were a hit with me. No one has the right to judge someone’s reconstruction-or-not-reconstruction choices. Each person is a unique individual with her own world view.
And one’s own opinion can keep changing, too. When I first was diagnosed, I wanted to keep my breasts so badly, I had a lumpectomy, which was the right thing for me at that time. A few years later, I had a scare, and decided that enough was enough.
I wanted a prophylactic double mastectomy with reconstruction on the spot — a DIEP flap because I could no longer bear to see the effects of cancer on my breasts and didn’t want to wake up from surgery to be without breasts.
It was my choice, and it was right for me.
Good luck with your surgeries. You are doing what is right for you. You are right: when it comes to cancer, there are some pretty unpleasant choices we all have to make.
glad the FIQ’s struck a chord. we could probably make a list of all the cancer FIQ’s….
Full speed ahead! LOVE the concept of FIQs. I’m getting the same about my decision not to reconstruct. Here’s to a world where we can each come to our own realizations about our needs and no one else presumes to know better. BTW, if you haven’t already found “Prepare for Surgery: Heal Faster” by Peggy Huddleston (a Harvard-trained psychotherapist), it demonstrably bettered the outcome of my mastectomy.
wow, thanks for the tip, chandra. i will check it out.
Lani, sorry so late in commenting, but first off, thank you for mentioning me. Reconstruction is never far from my mind, possibly because after two years, I’m not still not done, or should I say, unfinished. I never really had anyone question my decision, it was more about opting for bilateral mastectomy over lumpectomy. Everyone has an opinion about that and as you say about reconstruction, should respect mine without imposing theirs. Thanks for bringing up this important topic and talking about it so beautifully. It’s you body, your choice!
*fist bump*
Just found your blog—and this post resonates through and through. My cancer journey started 18 months ago, and after the trifecta of treatments, I’m wondering about living with my new post bi-lateral mast body. I just couldn’t dive into the reconstruction without having some sense of knowledge…of what “without” would feel like. Well, it sucks. I’m 35 and coping with my Peter Pan body, but still finding my sea legs. Thanks for your brutal and brave honesty-it’s helped my processing. I only wish you the best, heal fast and quick, and THANK YOU.
Welcome to the blog, Jane. I am sorry that you are having to deal with this awful decision, and I am very pleased to have helped you with your process.
I’m so sorry you have had to justify your actions to others around you. Wow. This is an extremely personal and individual decision, and I support you completely. So glad we live in a day when we can do these things medically (and can survive bc to boot!). God bless you, friend, and you are in my prayers for your upcoming surgery and recovery. Sending big hugs!
Good post…I think women should do as they see fit for themselves and shouldn’t need to justify a decision to others. For example, who are we to say a women is too old for recon or in our untouched bodies to say “why do you need breasts anyways?” Kudos to you for making a decision to make yourself happy. Recon can be a long road but is well worth it in the end if it makes you feel better about yourself. Also, it seems many of my patients that are the happiest with their decision are the women who had delayed recon. Best of luck with everything ChemoBabe!
Your Friend,
Heather Flanagan
Founder, http://www.mybreastcanceranswers.com
Dear CB,
Marvelous post!
Good luck with the surgeries, have the most beautiful not-important-boobs there are
we deserve feeling feminine and sexy and not breast-aware or deficient, at the back of our minds, at every minute…
I really felt, reconstruction helped me move to a more distant faze in my “life after cancer”.
Be glammed babe, you rock !
Oh Lani,
I just had a chance to read this post now. FIQ’s? Brilliant. How and why is it — what kind of new intrusion are we dealing with that others feel compelled to comment/advise/badger/question another’s decision about reconstruction? It’s a very interesting issue.
You’ve been thoughtful about each step and so have your doctors. I lived w/the post mastectomy body too, for about a year, while I healed from the onslaught of chemo, radiation and multiple surgeries. Reconstruction is the last lap. You’ll be ready and I think darling, that you will be MAH-ve-LOUS.
Hugs,
Jody
Yes those FIQ’s . I opted not to have reconstruction and to many it seemed like a personal affront to them. The comments seemed to stem to either don’t you want to look like a real woman anymore? or You already had surgery twice what’s a little more? It’s no big deal? To who me or them? I also decided not to have radiation after a great deal of consideration, weighing the options I said No Thanks. Being fair I knew what radiation was going to leave me with. For some reason people have the mistaken perception they have the right to be intrusive ask stupid questions. A little like the person talking to a blind man shouting at the top of their voice. The fellow says in a calm voice. I’m blind not deaf……
Love Alli……XX
Most people were shocked when I stated (from diagnosis) that I would not seek reconstruction. Everyone assumed because I was 36 years old that reconstruction was a forgone conclusion.
I have cerebral palsy. The idea of having ANY surgery that isn’t required of me completely freaks me out. BUT I’ve been having surgeries since I was 4 years old.
Ultimately, every woman must decide for herself. A friend allowed me to see her reconstruction (completed) and I was struck by the beauty of it. No, my mastectomy scar doesn’t make me happy, but it’s the choice that was right for me.
Lani, you don’t owe anyone any kind of explanation. I say that you should do what you feel is best. If you are happy, BRAVA!!
I am so sorry you have felt judged or interrogated about reconstruction. I underwent bilateral mastectomies in July 08 and started reconstruction in Feb 09. I was glad I waited too. It gave me the time to see what life would be without my cumbersome DD or F or something like that. As beautiful and as they were, they were difficult to dress, painful all the time and caused me many, many biopsies, aspirations and surgery before getting my diagnosis. For me, the process was not painful at all, mostly because I was still numb from the orig surgery. But to be honest, they are still a bit tight( implants under the muscle), don’t fit into an actual bra size, can’t wear underwire, there are indents and scars right into the cleavage area and I have some extra tissue under my armpits that is hard to squeeze into a bra. (I wouldn’t allow any bigger size than what I have now, because the old ones were too big ; )) That’s the reason for the indents I guess. My reconstructed nipples and areolas are pretty, but I miss MY nipples which has been the most difficult part for me.
In the end, it is what it is and I am grateful they could do what they did for me. Dressing is still difficult because I have large shoulders, B/C breasts and a post chemo/arimidex/no estrogen, 49 year old, menopausal, ungodly fat stomach that I cannot get rid of, nor hide.
6 of one, 1/2 dozen of the other.
I think people are seriously just curious, trying to think of questions to ask, or trying to say you are ok the way you are. This whole breast cancer, reconstructive process is so complicated, that unless you have gone through it, understanding it is just impossible.
I hope your process is also pain free and you are happy with the outcome. It’s amazing what they can do these days!
Forgot to add: I never had any shyness about my reconstruction. I showed them to anyone that would look. I sort of felt that they weren’t really mine, so I didn’t feel attached to them. I was also impressed by the process and thought everyone should see it ; )