IDLEs

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.”

Jim Wilson, The New York Times

Jim Wilson, The New York Times

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? IMG_4795What if?

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Tamoxifen and kids

Did y’all hear about this? A Trenton, New Jersey CVS pharmacy accidentally dispensed tamoxifenn instead of pediatric fluoride pills.

abcnews.com

Yikes.

I love CVS for the generous donations they made to Extreme Home Makeover, the feel-good show that used to be on TV. I searched to find a source to tell me how much CVS donated via the show over the years, but my patience wore off before I could find an answer. Suffice to say it’s a lot.

When I read about the drug mix-up, I cringed. The estimate is that as many as 50 kids received Tamoxifen instead of their chewable fluoride pills between December 2010 and February of this year. CVS hopes that any one of those 50 kids who tried to chew a tamoxifen pill instead of the usual fluoride pill would notice that something was different. Daniel Hussar, who teaches at the Philadelphia College of Pharmacy, was quoted as saying that because tamoxifen is meant to be swallowed, no effort is made to make it taste good, as is the case with chewable fluoride. He says a child who tried to chew tamoxifen would likely “want to spit it out or tell his parents it tastes bad.”

If they didn’t notice the taste, I wonder if they noticed the side effects. I pity the parent who has to deal with a moody, hot-flashing kid.

Because tamoxifen’s job is to block estrogen and prevent breast-cancer recurrences, it can monkey with one’s hormones. I’ve written about this very topic. More than once. I feel pretty qualified to complain about the side effects of tamoxifen, even though I know it’s an integral player in the recurrence-prevention game. I know well that this drug is my best shot for keeping that infernal cancer beast from showing its ugly mug around here again. The National Cancer Institute says explains it, “As adjuvant therapy (treatment given after the primary treatment to increase the chances of a cure), tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. As treatment for metastatic breast cancer, the drug slows or stops the growth of cancer cells that are present in the body.” Great right? Yes. Definitely. But, as we all know, there is no free lunch, and tamoxifen comes with some heavy side effects.

At the risk of sounding like one of those annoying commercials that lists every side effect under the sun, here goes:  increased chance of blood clots, increased risk of strokes, development of uterine cancer, and cataracts. But wait, there’s more: menopause-like symptoms such as mood swings, hot flashes, joint pain, and leg cramps. Not listed is the accelerated aging characterized by dry skin, loss of collagen, brown spots (aka “age spots”), and thinning hair. Because losing my rack isn’t enough, I also got thrown into chemically-induced menopause and became a brittle old woman decades before my time.

Not that I’m complaining.

Instead, I’m looking on the bright side: when I pop the little white pill every morning, I know exactly what I’m getting. No surprises. No mistaking a chewable fluoride pill for a powerful anti-cancer weapon.

 


2 friends

Two of my friends got the dreaded call from their OB-GYNs after their routine mammogram. The call that makes you sweat. The call that makes you wish you’d refused to pick up the phone. The call that makes you wonder how the person on the other end of the line can be so calm when you’re freaking out. The call that sets in place a chain of events that have the power to change your life forever.

How ironic that out of all the women in the world, and out of all the women I know personally, and out of all the women I consider friends, two of them got the call. On the same day.

It stinks.

It’s not fair.

I don’t like it.

But that’s the reality of breast cancer.

It’s indiscriminate. It cares nothing for age — both of my friends are under 40. It cares nothing for financial status. It cares nothing for how well or how poorly one treats one’s body. It strikes old and young, wealthy and struggling, health nuts and McDonald’s junkies. That’s the reality. There’s very little rhyme or reason to it. It’s a crapshoot.

I’ve said it before and will continue saying it: I’m so sick of cancer.

The reality of any kind of cancer is shitty. I can’t think of a better word for it. Any cancer is shitty. I speak of the shittiness of breast cancer because that’s the one I know, but I certainly don’t think it’s the only cancer that is shitty. Just a disclaimer and an affirmation that all cancer is shitty. And proof that I really like using the word shitty. And shittiness.

There is of course a good chance that both of my friends will escape breast cancer’s grasp. I’m hopeful that the follow-up ultrasound/MRI/biopsy shows nothing. Calcifications, fibroids, dense tissue, cysts. There are lots of things it could be, and the rate of false negatives is something to hang on to in these situations. The National Cancer Institute puts that false-negative rate at 10 percent. I’m hopeful. “False-positive mammogram results can lead to anxiety and other forms of psychological distress in affected women. The additional testing required to rule out cancer can also be costly and time consuming and can cause physical discomfort,” according to the NCI website. Really? Ya think?

That’s ok. Both of my friends can take the costly, time-consuming, and uncomfortable aspects of the additional testing. It’s the anxiety-causing aspects that are hell. The thoughts that run through one’s mind between receiving the dreaded phone call and getting the additional testing can make one crazy. Then there’s the infernal waiting period between the additional testing and receiving results. It’s a wonder we’re not all stark-raving maniacs popping sedatives every hour on the hour.

This is the reality of breast cancer.

Even when it hasn’t struck, when it’s a mere possibility instead of a certainty. Even when it hasn’t infiltrated your life for real, it has the power to mess you up.  Way before actual diagnosis, the reality of breast cancer is harsh and unrelenting. And guess what? Even after “getting through it” in terms of receiving the dreaded phone call, having the additional testing done, hearing the actual diagnosis, making the decisions necessary, and undergoing surgery and/or treatment, it’s harsh and unrelenting. Coming to grips with one’s new body. Dealing with the mountains of paperwork and bills. Keeping abreast (haha) of the latest research. Deciding what lifestyle changes to make or not make. Navigating the psychological fracas. Coming face-to-face with mortality. Moving through the treacherous stages of emotional distress. Facing the ever-present prospect of recurrence.

This is the reality of breast cancer.

One of my two friends fell victim to crappy insurance. She had some symptoms that caught her attention months ago but waited to get it checked out until the new, better insurance took effect. Even in the suburban bubble, where affluence reigns, insurance hassles prevail.

Which leads me to remind everyone to please take a few seconds out of your day to vote for The Rose in The Pink Well Challenge that I mentioned yesterday. The Rose helps women who don’t live in an affluent bubble get access to the breast health care that can make a real difference in their lives. If you’ve ever spent one second thinking how lucky you are to have whatever version of insurance you have, this is your chance to give back. If you have no insurance and you’ve spent more than one second worrying about that, this is your chance to help others in the same boat. If you have great insurance and have never had a health worry, I don’t want to talk to you right now but you can still help. 🙂

It’s easy to help, but time is running out. Click on The Pink Well Challenge link above or right here, click “VOTE NOW,” enter your email address, check your email for the access-granting link (do it now, not later because I don’t want you to forget), click the link, scroll down to charity #137, enter “10” in the box on the far right, and submit. Tell your friends and nag your family members.

And keep your fingers crossed for my two friends.