In this article for The New York Times, Peggy Orenstein addresses one of the many tricky topics surrounding breast cancer: to remove or not remove the “unaffected” breast?
It’s a tricky topic because the research and prevailing medical consensus are in direct opposition to gut instinct. Research says a bilateral mastectomy in patients with cancer in just one breast has little impact on survivability. Doctors say the odds of surviving low-grade noninvasive breast cancer is the same whether we undergo a lumpectomy or a mastectomy. But our guts often say “lop em both off.”
That’s what my gut told me to do, even after extensive research and number-crunching. My gut instinct leaped immediately to a slash-and-burn tactic. My darling breast surgeon required me to wait at least 3 days before making my decision on the lumpectomy vs mastectomy debate; I complied but my decision was made in the first 10 minutes of grasping my diagnosis. My gut told me to opt for the bilateral mastectomy.
I suppose this puts me in the category of women opting for a CPM, or contralateral prophylactic mastectomy. The experts whom Orenstein spoke to about the CPM debate refer to the increase in women undergoing CPM as “epidemic” and “alarming” and believe it is driven by women not fully understanding the math. Girls have always been bad at math, right? That’s the message I got, growing up in the 1970s in suburban America.
A 2013 study done by Boston’s famed Dana-Farber clinic revealed that women younger than 40 with no increased genetic risk who had cancer in one breast believed that “within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.”
Upon my diagnosis, I understood the math. It wasn’t easy and it was confusing. It took time and effort, but it was not beyond me (having a math guru in the house helped tremendously, but the point still stands). I understood that my chances of successfully removing the cancer in my “affected” breast was the same whether it was done via lumpectomy or mastectomy. I understood that my chances of developing the same cancer in the other breast were slim to none, because, as Orenstein says,”cancer doesn’t just leap from breast to breast.” I understood that low-grade noninvasive lazy cancers don’t typically become deadly; it takes a cancer that metastasizes to do that.
I also understood that a bilateral mastectomy is not an easy surgery. Not by a long shot. As Orenstein so colorfully describes it, “breasts don’t just screw off, like jar lids.” Undergoing a mastectomy involves not only losing the breast itself but also (typically) the nipple and areola, as well as the lining of the chest muscles. Factor in the JP drains that are snaked into the traumatized chest, just to add insult to injury. I couldn’t lift my arms for days after my mastectomy and needed help with the simplest things, such as brushing my teeth and applying chapstick. I needed a new, temporary wardrobe of tops that buttoned or zipped up, because lifting my arms over my head to put on or take off a shirt was a no-go for my battered upper body. I needed help — lots of help — which doesn’t jive with my stubborn and independent countenance.
I knew that choosing the harder road of a bilateral mastectomy over the easier, less-invasive lumpectomy did not increase my odds of surviving breast cancer. At least according to the studies. I knew that a mastectomy is much riskier than a lumpectomy. I knew that recovery would be much harder and more time-consuming. Nonetheless, my gut told me to take that more difficult road. My gut was right.
Orenstein spoke to Steven J. Katz, a University of Michigan professor of medicine and health management. He studies medical decision-making, and has found that people tend to react from the gut when confronted with a diagnosis because we are wired to make “fast-flow decisions” that make us want to flee. Understandable to anyone who has been on the other side of the doctor delivering bad news. Upon diagnosis, Orenstein recalls feeling “as if a humongous cockroach had been dropped onto my chest. I could barely contain the urge to bat frantically at my breast screaming, ‘Get it off! Get it off!'” Her version involved a giant cockroach; my version involved a scorched earth.
Dr. Katz says that doctors need to understand how our gut reaction affects our post-diagnosis decision. He speaks of “the power of anticipated regret: how people imagine they’d feel if their illness returned and they had not done ‘everything’ to fight it when they’d had the chance. Patients will go to extremes to restore peace of mind, even undergoing surgery that, paradoxically, won’t change the medical basis for their fear.”
It is a paradox: our intellectual self versus our gut.
Orenstein points out that “it seems almost primal to offer up a healthy breast to fate, as a symbol of our willingness to give all we have to and for our families. It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one ‘just in case’ or for the sake of symmetry.”
While it may be hard to imagine, there’s no way to predict how one will react to a cancer diagnosis. All the studies and statistics are worthless in the face of the worst-possible scenario, which is facing cancer. I was 40 years old, with 2 kids under the age of 10, when I faced that scenario. Of course I thought of them and the possibility of leaving them motherless and rudderless. Having lost my own sweet mama brought that into even clearer focus. Perhaps my decision to undergo a CPM was based more on emotion than on rational thought. No doubt my gut was driving that bus.
But guess what? My gut is a careful and prescient driver. In steering me toward the more-radical surgery option, my gut saved me. Maybe saved my life, but definitely saved me from undergoing a second mastectomy, one that would most definitely not have been of the CPM variety.
My “unaffected” breast had cancer, too. And Paget disease to boot. Nothing had showed up on any of the myriad tests or scans I’d had before my mastectomy. It was the surgical pathology on the “unaffected” breast that finally revealed those cancers. How long would those cancers have grown, unannounced and unaccounted for, had I not followed my instinct and listened to my gut? I don’t like to think about that.
I’ve learned — the hard way, of course — that I’m one of those medical weirdos whose body does not conform to standard protocols. I’m the kook who gets the weird stuff; to wit, Paget disease accounts for a mere 1 to 4 percent all breast cancers, according to the National Cancer Institute. Ditto the post-mastectomy infection I contracted. Who gets a microbacterium fortitum?? So few people that my infectious disease team — yes, I had a team of ID docs — still wonders where the hell that originated.
We medical weirdos don’t fit into studies or facts or figures. We are the ones who keep their doctors up at night, scratching their heads and wondering what?? what?? what is going on here?? We are the ones for whom the “if it can go wrong, it will” axiom applies. We are the ones who make other people reassess the shittyness of their situation (you’re welcome, by the way).
Misguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”
Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.
Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.
However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.
I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.
It’s never enough.
While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.
Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.
My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.
The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.
All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?
It’s never enough.
At my one-week post-op visit today, I got a copy of the report and learned a whole bunch of new words: adnexa, fimbriated, myometrial, serosa. Those will come in handy next time I play Scrabble.
My endometrium was described as “tan and lush;” my uterus “tan-pink, smooth, and unremarkable.” I guess when it comes to compliments, the radiologist giveth, and the radiologist taketh away.
That’s ok. Whether tan and lush or unremarkable, those trouble-causing parts & pieces are gone. Good riddance. Cheers to good news and to those three little words: No malignancy identified.
I’m a terrible patient.
A very impatient patient.
I’ve written about this topic a time or two. Just the other day, I reported on my status after the summary removal of my last remaining girl parts.
Now, a few days further into the healing process, I feel good but not great. Truth be told, I’d much prefer to see and feel a lot more progress. The days are long when I’m forced to sit and heal. I’d like to say I’m a better patient than I used to be; crikey, I certainly should be given all the practice I’ve had during the last several years. But I’m not. At least not noticeably better.
In “Wisdom from the DL” I labored under the mistaken impression that I was getting better at being a patient:
I’ve been on the DL — disabled list — an awful lot since cancer came to town, and I don’t like it. I don’t like it, but I think I’ve gotten better at it. I’ll never be good at being a spectator in my own life, and I’ll never be one who enjoys the journey in my haste to get to the destination,but I have learned the value of time & place and that sometimes you have to be instead of do. I’ve learned to chant “It’s temporary” a thousand and one times to remind myself that while this is my life, it won’t always be like this.
In “Recovery mode” I was perhaps more realistic and came clean on being a terrible patient:
Recovery is tough, and it’s not one of my favorite things. It’s nowhere to be found on the list of my favorite things. I’m a terrible patient — impatient, restless, and intolerant of my dependent state. However, I’m quite the pro at the recovery process now, after multiple surgeries, and don’t fight it as much as I did in the beginning. I’m not going to win patient of the year award in this lifetime, but I’m not gnashing my teeth over the process this time around. Baby steps.
Here I am again, on the DL and in recovery mode. And I still hate it. I still suck at it. I’m still a very impatient patient.
Amidst a previous recovery–for which surgery, I don’t even recall–I explored some words of wisdom on the topic of patience. A few of my faves:
From Shakespeare’s Othello: “How poor are they that have not patience! What wound did ever heal but by degrees?” By excruciatingly slow degrees, that is.
Alexandre Dumas chimed in: “All human wisdom is summed up in two words — wait and hope.” I’m pretty sucky at both of these.
And from Leo Tolstoy: “The two most powerful warriors are patience and time.” Well, that confirms it: I’m hosed.
Then this from Ben Franklin: “He that can have patience can have what he wants.” Franklin. What a smart ass.
What I want is a time machine. Set to “fast forward” so I can speed through this infernal healing process. Or perhaps a home lobotomy kit, so I can fashion myself a new personality. One marked by patience.
Yesterday was my first full day home after my hysterectomy, or The Great Clean-Out, as I like to refer to it. At the risk of jinxing myself, I’ll say I feel pretty good. Real good, considering what went down Monday morning.
In typical fashion, I watched a YouTube video of my surgery after the Clean-Out was complete. It’s fascinating and gross all at the same time. The way the tiny instruments saw away the ligaments connecting the reproductive organs to the body . . . super cool. It reminded me of “the claw” game at an arcade, but instead of procuring the goodies, “the claw” discards the junk I don’t want anymore. This instrument, about the size of a drinking straw, can chop through body parts and allow them to be removed through a small hole in the belly. Genius. And way better for the patient than conventional, open surgery. Way better, especially, for girls who have lived through a nosocomial infection.
I’ve got four incisions on my belly: three were for the surgical instruments and one for the camera. I had just woken up yesterday when I snapped this selfie, so the lines traversing my belly are from sleep.
I felt well enough yesterday to take my dog for a short walk, which we both enjoyed, and I expect we will take another lap today. I sat outside for a while and communed with nature. It was hot, but the sun felt good and the chirping birds and buzzing insects reminded me that life goes on.
My goal yesterday was to avoid taking any narcotics. Check. My goal today is to bathe.
We’re entering into the danger zone of my recovery, in which I feel better and am bored. That’s when I start getting crazy ideas, like “Oh, I’ll just wipe down the kitchen counters.” No. Just no. Step away from the sponge. I’m a terrible patient and am terribly impatient. Yes, I know: there are books to be read, movies to be watched, TV shows to be caught up on, but the days are long and my butt gets numb from so much sitting. So much doing nothing. I really stink at doing nothing.
Perhaps it’s time for some champagne.
Yesterday I bid farewell to my uterus, cervix, ovaries and Fallopian tubes. They are gone, baby gone. Well, actually they’re in lab somewhere in the Medical Center, undergoing testing. Hopefully no evil this way comes.
The surgery was easier than I expected (although anything will be, compared to what I’ve endured in the past). As usual, the care was exceptional at The Methodist Hospital. Its slogan is “Leading Medicine,” and those folks practice what they preach.
I was on the labor & delivery floor, which was nice and quiet and had the added bonus of allowing me to peep at the newborns in the nursery as my IV pole and I walked laps around the floor.
One tiny complication (you didn’t really think I’d get through surgery without one, did you?!). Last night my blood pressure dropped and stayed low — 80s over 50s — all night. I must admit, I felt kinda puny. Watching those numbers hover so low as they checked me every two hours was a bit worrisome, but after two bags of IV fluid and a few more laps around the floor, it was back to normal this morning. I was back home barely 24 hours after checking in for surgery.
I’m feeling a bit smug, I must say, after the nurse told me another patient had the exact same surgery as I and she’s nowhere near ready to go home. She didn’t even want to get out of bed, while I was slipping on my flip-flops and packing up my bag to get outta there. To each his own.
I told my family that if team Greece won its game against Costa Rica in the World Cup last week, I would make pastachio. While the Greek boys lost the game, once the word “pastachio” entered my teenage boy’s brain, the deal was sealed.
If you’ve never been lucky enough to eat this dish, you need to get yourself to a Greek restaurant or find yourself a nice YaYa to invite you over, pronto. It’s been called the Greek lasagna, but most Greeks scoff at that comparison; as if lasagna compares.
Here’s the blueprint: long, tubular pasta layered with a meat sauce simmered in tomato sauce and spices, topped with not one but two bechamel sauces — one thin and one thick — and not one but two layers of ground Romano cheese. Bake it until it comes together to form a version of heaven on Earth.
My sweet mama was not Greek, but she was clever, and she ingratiated herself into the hearts of the Greek ladies I grew up with and learned how to cook like they did. Greek ladies can be rather exacting when it comes to their cooking, and most would not welcome a “white” woman into the fold. My mom, however, was famous for breaking through such barriers. She learned to cook with the best of them.
She was also famous for transcribing her recipes in a kooky way. The most widely repeated example is her recipe for chicken crepes (yes, homemade crepes) that contain no chicken. Good luck pulling that one off, amateurs.
Her pastichio recipe isn’t missing any key ingredients (as far as I know), but it is light on descriptions and specific instructions. As in: “Prepare the thin sauce by melting the butter and adding the flour when it’s time.” Ok, over what kind of heat? Medium? High? And what exactly does “when it’s time” mean? And how does one know when the “thin” sauce is thickened enough to add the egg? It is a “thin” sauce, after all.
My mom taught me how to make pastichio, and while it’s a foolproof way to win friends and influence people, it’s also a lot of work. A lot. Really a lot. I don’t take on pastichio on a whim. But seeing Team Greece in the World Cup inspired me (and my #1 son pestered me). But mainly I was inspired. It had nothing to do with thisOr thisOr thisOr thisAnd it certainly had nothing to do with thisRight.
Back to the recipe.
For the food that my son, my pride & joy, asked me to make.
To start, I make the meat sauce. I brown grass-fed, antibiotic-free ground beef with a large chopped onion and 3 minced garlic cloves until the meat is cooked through and the onion is tender. Then I add tomato paste, oregano, basil, salt, pepper, and a pinch of ground cinnamon, along with 2 cups of water. Some pastichio purists do not add the cinnamon but prefer to sprinkle the very top of the dish with ground nutmeg. I do it the way my sweet mama taught me, though, and she used cinnamon. Let that simmer until the flavors are melded and the liquid is absorbed.
Next boil the pasta. Then make the sauces. The “thin” sauce, as my sweet mama called it, is butter, flour, milk and an egg. I will always remember watching her make the roux and her telling me that you know when the roux is done by the way it smells: nutty and browned. Whatever that smells like, I thought, but now I know. I just know. After the roux is sufficiently nutty & brown smelling, in goes the milk and you whisk like your life depends on it. No lumps! No scorching! Don’t even think about turning away or mixing yourself a cocktail. Whisk! Whisk!
Once the “thin” sauce has thickened (again, you’ll just know when it’s thick enough, even though it’s a thin sauce, she used to say), temper the egg and again whisk, whisk, whisk, then whisk some more. No curdling! No clumping!
When the “thin” sauce is done and the pasta has cooked, start assembling: cooked pasta in a buttered casserole dish, then top with the “thin” sauce. Top that with copious amounts of Romano cheese. When in doubt, add more cheese.
Then get back to the stove to make the “thick” sauce. Same ingredients as the “thin” sauce but different proportions. Ditto the Olympic whisking. I always wonder why every Greek lady I ever met had bat-wing arms, even with all that whisking. You’d think they’d have Michelle Obama arms, but they probably ate the finished product and didn’t pump iron. I’m in pretty good shape and pump iron regularly, yet this Olympic whisking wears me out. I seriously need a cocktail (maybe two) when it’s done.
So, once the “thick” sauce is done and you’ve had a cocktail (or two), it’s time to add the meat sauce to the pasta/”thin” sauce/cheese layer. Spread it on thick and pat it down lovingly. There is a lot of love in Greek food.
I was so tired from all the whisking, I forgot to take a photo of the meat layer lovingly patted into place, so imagine it in your mind. While you do that, I’m mixing another cocktail.
Meat sauce lovingly in place means it’s time for the “thick” sauce. But before you put it on top of the meat sauce, whisk in more cheese. Yes, more cheese. And yes, more whisking. Which means yes, more cocktails.
So, “thick” sauce is made even thicker with more cheese and is glopped on top of the meat layer.
(I’m pretty sure my sweet mama never glopped a single thing in her kitchen, but that’s how it goes down in mine.)
Once the “thick” sauce is in place, sprinkle the top with more cheese. Then add a little more. You can never have too much.
And here’s where I get in big trouble. Here’s where I risk having my Greek heritage revoked.
There. I confessed. The secret is out.
If you’ve seen the movie “My Big Fat Greek Wedding,” you know what I mean. My Greek relatives shake their head and cluck their tongues at my meatless ways.
It’s ok. Really. It is. I may not eat meat, but I make good cocktails.
Once the pastichio is assembled (whether meaty or meat-free), there’s one more step, and this is one I cannot abide. Another reason for having my heritage revoked I’m sure, but I just can’t do it. The final step is to spread melted butter over the top of the “thick” sauce and the last layer of cheese. Can’t do it. Even though I burned at least 3,000 calories just from the whisking, I can’t do it.