Lately, much has been written about the rush-to-mastectomy decisions adopted by women with DCIS diagnoses. DCIS (ductal carcinoma in situ) is the diagnosis given when abnormal cells reside in the milk ducts. It is precancerous and noninvasive. It is not life-threatening, although it can lead to an increased risk of developing an invasive cancer. While it is unquestionably scary to receive such a diagnosis, some in the medical community are questioning whether a slash-and-burn reaction to DCIS is appropriate. The current standard of care for DCIS is surgery and radiation. A natural reaction for a woman with DCIS is to undergo the most far-reaching form of treatment available. I won’t argue with that, because no one has the right to judge another person’s reaction to or decisions toward a cancer diagnosis. Anyone who tries to should be punched in the brain. Repeatedly.
That said, data don’t lie, and the case being made for a less-aggressive approach to DCIS is gaining ground. Dr Laura Esserman, a breast surgeon at the University of California, San Francisco, is setting the pace. In a recent New York Times article, Esserman says her goal is “to move the field and do right by our patients.”
Instead of immediately ordering biopsies for women with unsettling findings on their mammograms, Dr Esserman recommends active surveillance. She favors the “wait and see” approach, speaking out about the myriad ways in which a woman is adversely affected by slash-and-burn treatment for cancers that rarely progress beyond DCIS.
Dr Esserman is bringing to light the fact that mammograms — while valuable — find the slow-growing, non-metastasizing cancers that lead to panic more than they find the most lethal forms of breast cancer. She is lobbying for big changes in the early-detection world and has asked the National Cancer Institute to consider dropping the word “carcinoma” from the DCIS label. Instead, Esserman would like for DCIS to be renamed “indolent lesions of epithelial origin.” IDLE would replace DCIS as the way to describe a stage 0 diagnosis. IDLE is catchy and much friendlier than DCIS, if you ask me.
This woman is turning the breast-cancer world on its head, and I like it. In an era of less face-time with doctors, Dr Esserman spends as much time as needed with each patient, often texting or calling them at home. A big part of her “wait and see” approach to DCIS is asking the patients soul-searching questions and utilizing specific testing to gather further evidence before recommending surgery. She’s pushing for more innovation in clinical trials and for fine-tuning the process of screening for breast cancer. In cases for which she does recommend surgery, Dr Esserman counsels and frets like a family member, and even sings to her patients as they undergo anesthesia. Personally, I’d much prefer a serenade to a prayer before I go under the knife. I can imagine her patients, smiling and relaxed, as they enter the last blissful sleep they will enjoy for a while to come.
I love Dr Esserman. I don’t know her, but I love her. I love that she’s crashing through long-standing views and taking the road less traveled. I believe she will enact great change in the landscape of breast cancer. I wonder how I would have reacted to my own breast cancer diagnosis if mine had lacked an invasive tumor. If my cancer was simply DCIS, would I have chosen a different path? I don’t know, but I do know how scary my diagnosis was. I know that the scorched-earth treatment plan was right for me. I had watched my mom die from cancer at age 67. My kids were still in grade school when “the C word” was applied to me. I wanted to be as aggressive as possible, so my choice was to go balls-out against cancer. And it’s a good thing I did, because my “non-affected” breast turned out to be riddled with cancer. Nothing showed up, though, on any of the screenings. Nothing. When Dr Esserman mentioned that mammograms don’t find the more lethal forms of breast cancer, I nodded my head knowingly and actively talked myself off the roof rather than allowing myself to think “what if?” What if I had chosen a single lumpectomy or single mastectomy, and that smattering of cancer cells and Paget disease in my “unaffected” breast had continued to evade detection? Would I be sitting here, typing this post? Would I be glancing up from my computer to see this guy outside my window? What if?
Just came across this story about a jackass in Austin who couldn’t be bothered to report to his probation officer as part of his plea-bargain for a burglary, so he claimed he has breast cancer and was undergoing treatment. He even provided a fake letter from an oncology office to that effect.
He accepted more than $1,500 from a benefit staged on his behalf.
This guy must have thought he was pretty special; while 1 in 8 women in the United States will be diagnosed with breast cancer, it’s more like 1 in 1,000 for men. This year alone, more than a quarter of a million women will be diagnosed with invasive breast cancer, and another 57,000 will get the news that they have DCIS breast cancer. For men, 2,140 new cases of invasive breast cancer are expected, according to breastcancer.org.
Yep, he’s special all right.
I sure hope the karma wheel catches up with him.
He’s so young and so cute ya just want to squeeze him. And he’s a hugger, too, so squeezing him is definitely an option. Me, I’m not much of a hugger, as my book club buddy Laura will tell ya. She manages to get more hugs out of me than anyone. I’m not very touchy-feely by nature, but I’m working on it.
I got a couple of hugs from Dr D yesterday, and since I won’t see him again until January, he said Merry Christmas and Happy New Year, too. That makes me panic a little, thinking the holiday madness is upon us and I don’t have enough time to engage in the consumerism that has become de rigueur. I also don’t tend to think that far ahead. I’m more of a small-picture kind of girl who’s learned not to look too far down the road, because there might be something wicked lurking, like a 15mm invasive ductal carcinoma and its nasty friends, DCIS and Paget’s Disease.
Dr D is very big-picture, though, and he’s not at all worried about something wicked lurking down the road. That’s one of the many reasons I like him — every time I see him, he tells me he doesn’t think my cancer is going to come back. That’s music to my ears and a balm for my worried soul. When I told him that I think about recurrence every single day, he tut-tutted and told me to think about something happy instead. Duly noted.
We had a long talk about my love affair with alcohol, as we do at every visit. He knows I’m a fan of the sauce and while he would like to see me cut back because of alcohol being a risk factor for breast cancer, he also advises his patients to live their lives, and he’s realistic about the studies being inconclusive about just how big of a factor alcohol is anyway. I pointed out the tragic and really-not-fair example of Linda McCartney, wife of the famed Beatle, who died from breast cancer even though she was a hard-core vegan, ate 100 percent organic, had no family history of the disease, and never drank. You can’t live much cleaner than that, and the bastard still got her. I’m not vegan, but I am hard-core vegetarian, I eat a lot of organic, I actually like fruits & veg, and had no family history of the bastard disease, so I’m going to enjoy raising a glass here and there. Not every day, like I would like, but that’s my choice. There’s nothing I like more than having a glass of wine while I cook dinner every night. I don’t do that anymore. But I’ll still say cheers to the freaky weekend. And if a certain someone shows up with an unexpected bottle of bubbly because it’s Tuesday, then I say life is for living and pop that cork.
Once we discussed and debated the effect of alcohol on BC patients, we (thankfully) moved on to other topics. He has a very nice bedside manner that involves him spending a good deal of time looking right in his patients’ eyes and asking how the feel. How they are coping. How they are emotionally. He knows that fighting the vicious beast that is cancer is way more than a physical battle, and he spends the time necessary to check on the non-physical battlefield. Smart man. In this process, however, he might have bitten off more than he wanted to chew by asking me if I’m happy with my reconstruction. Cue the $100,000 question.
Do I think my surgeons did a good job with my newly reconstructed chest? Yes. A fantastic job. Does it look 1,000 times better than it did pre-reconstruction? Way. But am I happy? Not so much.
See, we had a conversation very similar to the one last week. And I pointed out to Dr D, as I have to other docs, that I am one of the uncommon BC patients who was happy with her body before cancer ignited a stinking bag of dog-doo on my front porch. Sure there were some things that I wanted to tweak, after having babies, nursing babies, and turning 40, but overall I was happy before. That makes it kinda hard to then be happy with the after side of multiple surgeries and their far-reaching side-effects. I predicted that long after my “journey” is complete and I go back to my pre-cancer life, I will always see the scars instead of the progress. Not to be a Negative Nellie, mind you, but because I am very realistic. I know that the 17-inch scar on my belly will fade. In fact, it already has, and it started out looking way better than a lot of what I’ve seen in doing my research. I know that the “flaps” of skin used to create my breasts will settle into the landscape of my battle-scarred chest. I suspect that some day I will be more “me” and less “it” when it comes to thinking about how cancer has changed my body. But I’m not there yet, and Dr D listened and counseled me.
He gave me a very good piece of advice. So good that Amy jumped up and wrote it down on a piece of paper towel in the exam room. He said, “Focus your attention on the things you have achieved, because you have achieved a lot, but you still have a ways to go.”
He’s right, of course.
I just don’t tend to think that way. I’m way too busy thinking in the here & now (do I have enough bread to pack the kids’ lunches? Did I move the clothes from the washer to the dryer? It’s Mary’s birthday tomorrow; where’s the card I bought for her 4 months ago?). I need to stop a sec and shift from the here & now and the never-ending “to do” list and think for a moment about how far I’ve come and what I’ve achieved. My “journey” has been far from ordinary, routine. As my nurse-friend Laura says, “Everything that could go wrong did, and you were as far from a textbook case as could be.” True dat.
Two really great things came out of my appointment with Dr D, besides the pep talk and his blessing to have a drink. The first is the end of the Lupron shots. Hooray! I endured a year of that blasted drug, and am thrilled to say adios to it. The needle was huge, the drug was of the ilk that burns like fire upon entering the body, and the side-effects were hideous: hot flashes often enough to power a small city. Sweating more than Leon Lett after his infamous fumble against the Dolphins. Mood swings that make people run and hide from me. Joint pain that sometimes catches my breath. Decreased bone density that I can’t feel but fret about anyway. Bye-bye nastiness. Of course the flip side to being done with Lupron injections for hormone suppression means that I have to get serious about the oophorectomy. Gotta get those ovaries removed for good. As much as hate the idea of yet another surgery and yet another recovery, I am of the “slash & burn” mentality when it comes to cancer. Get ’em out so they can’t cause any trouble.
Item #2 in the “this is really great department” was the very last port flush. Hooray! I’ve had my port for almost 18 months, and it has served me well. It’s made my life easier and saved my already-floppy veins from being blown out once and for all. It’s allowed me to endure so many needle sticks that a 20-gauger no longer makes my palms sweat. But I won’t miss it. I will happily bid adieu to the titanium disk sewn into my jugular. I will not miss the monthly flushes with saline and Heparin. I will keep it, though, as a souvenir. As a reminder of all that I’ve achieved. Of all that I’ve endured. Of all the crap that was flung at me but how little of it stuck.
The body is a miracle, the way it heals. A factory of survival and self-repair. As soon as flesh is cut, cells spontaneously begin to divide and knit themselves into a protective scar. A million new organic bonds bridge the broken space, with no judgment passed on the method of injury.
Wow. That’s pretty prose. I wish I had written it.
I’d love to claim it as my own, but that would be wrong, and Lord knows I need the great karma wheel to turn my way. I can’t afford to tempt the gods of fate, as they seem to like toying with me.
Carol Cassella wrote that prose. If you’re a fiction fan and don’t know her work, I encourage you to get her books sooner rather than later. Whether you run to the bookstore or download onto your e-reader, get on it. You won’t be sorry. She’s an anesthesiologist-turned-author whose first book, Oxygen, is one of my all-time favorites. Her second book, Healer, wasn’t quite as good but I gobbled it up in hopes that it would be. I liked her right off the bat, because she’s a Texas native and a Duke graduate. A girl after my own heart. She’s also the mother of two sets of twins (!) and how she got anything done, much less wrote 2 bestsellers, is a mystery to me.
I read Healer this summer, while I was trying to heal. I was struck by the passage above, and loved how dramatically it introduces the book. From the very first sentence, I was hooked. While I certainly didn’t set out to turn this blog into a space for book reviews, sometimes things happen that way, and I’m an equal-opportunity blogger, so there we are.
As a physician, Cassella understands the intricacies and magic of the human body. As an author, she’s able to capture that and express it so that someone like me, an impatient patient, can read it and say, yeah, that’s right–the body is a miracle!
I needed that reminder. I was so focused on wanting my healing to occur faster, I didn’t realize that the fact that it was happening at all was amazing.
Equally amazing is the education this experience (e.g., the “cancer journey”) has provided. I’ve learned a bunch of lessons I never wanted to learn, such as how utterly unfair life can be. I’ve acquired skills I never thought I could and hope to never have to use again. Anything involving packing a wound or administering IV drugs at home falls into that category.
I’ve certainly learned a new vocabulary. Not just the new definition of “normal,” either. Things like nosocomial (originating in a hospital, as in a nosocomial infection). Like debridement (removal of foreign material or dead tissue from a wound in order to promote healing). Like aromatase inhibitors (drugs like Tamoxifen that lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen). Like oophorectomy (surgical removal of the ovaries).
I’ve learned how to get a good night’s sleep in a noisy hospital. I’ve learned the difference between DCIS (ductal carcinoma in situ) and invasive breast cancer, and that they’re both plenty scary. I’ve learned that an injection can leave a bruise for close to 3 months. I’ve learned that the practice of medicine is both a science and an art. And I’ve completely forgotten what it feels like to wear a bra.