Tag Archives: DCIS

Reverting to Form

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I’m a fraud. Well, not in the sense of identity theft or anything like that. But for the past several months I’ve been worried that something’s wrong with me and I haven’t shared it with this wonderful online community I’ve found. Some of my online buddies have shared their fears of an upcoming oncology visit or blood test, and I’ve thought of reaching out the same way, but I can’t bring myself to do it.

I didn’t reach out to many people offline either. My wonderful surgeon asked how I was when I popped in to invite him to a wine event fundraiser three months ago. And if there’s one thing I’ve learned, it’s when a doctor asks how you’re doing, it isn’t just small talk. He or she really wants to know. But online and off, I kept my fears largely to myself.

What happened was my platelets were heading in the wrong direction in September and December, and as much as my oncologist and family doctor told me not to worry, I couldn’t completely banish it from my head. I have often said that telling us how we should feel about our diagnosis is like telling us we should be six feet tall or have brown eyes. The same thing can apply to worrying. Some of us are just wired that way, although there are things we can do to ease it.

I did my best to stay offline and not let my cyberchondriac tendencies get the best of me, but I didn’t like it one bit that my oncologist bumped me up from my regular six-month checkup to four months. I didn’t like it that I wasn’t acing my blood work, and I hated it that there was nothing I could do about it.

Somewhere in the middle of all this stewing, I realized I was handling this the same way I handled my DCIS diagnosis four years ago. I told very few people while my head was churning and I was trying to figure out what to do.

I wasn’t on social media then, but now I realize it probably wouldn’t have made a difference. As open as I like to think I am, I’m still private in a lot of ways. I still have trouble admitting when I’m scared. I’m more comfortable talking about certain things when they’re in the rear-view mirror. I say supportive things to others dealing with their particular brand of medical misery, and I mean them, but I have one hell of a time taking my own advice.

I’m not sure what point I’m even trying to make with this, other than to let you know that the way we act online isn’t so different from the way we act offline. And don’t be surprised if you also find yourself reverting to form when faced with another challenge, or as in my case, a what-if scenario.

There’s nothing wrong with me, by the way. My platelets are back to normal. I’m back to checkups every six months. I’ll have to find something else to worry about for now.

Do Patient Empowerment & Squeamishness Mix?

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This post originally ran a year ago. I dusted it off because I was looking up medical terms online last night and encountered some photos that brought the old squeamishness back. -Jackie

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

3 Words to Banish: Coulda, Woulda, Shoulda

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2011 was full of news on the breast cancer front. One item that resonated with me was discussion of a new gene test that could pinpoint which women would be most likely to benefit from radiation for their ductal carcinoma in situ (DCIS), meaning they could also pinpoint who would benefit from a wait and see approach. By definition, DCIS is confined to the milk ducts. The question is will it mind its own business and stay there, or will it escape and start to spread?

DCIS is so new on the scene that it’s not well understood yet, and doctors would rather see their patients be safe than sorry when it comes to treatment. I went the safe route when I opted for a mastectomy over radiation (trust me, it wasn’t an easy choice, at least for me). So the obvious question is, what if I could have been spared either one? What if mine had been slower moving?

I’ll spare you the details of my decision-making process (they’re in my book, ahem) but I didn’t believe my DCIS was going to stay put, then or now. I realize there’s such a thing as cognitive dissonance (what most of us call sour grapes) but I don’t think that’s the case.

And besides, that’s not the point. Whether my belief system can handle this new information or not, we’re going to see a lot of this with breast cancer or any cancer. We also learned recently that perhaps they don’t need to remove so many lymph nodes to get a good feel for whether cancer has spread. I’m sure women with lymphedema are less than delighted by that news. Such is life. Such is medical progress. Imagine how we’d all feel if we had been operated on before they discovered anesthesia.

The point I’m trying to make is that cancer is no place for “Coulda, woulda, shoulda.” We do the best we can with the information we have at the time. Crystal balls are not retroactive.

Thinking about this also got me thinking about the “three words” concept for the start of the new year. A lot of people, including me, blogged about three words to focus on instead of making resolutions. I’d like to suggest that we also consider three words to banish from our thinking in 2012 and these three are at the top of my list. Not just for how I handled my cancer, but how I live my life.

Cancer can make you wonder what you want to do with this life you’re so lucky to have. Getting older does the same thing. 40 is called the old age of youth and 50 the youth of old age. I crossed over into the youth of old age just over six years ago. I do not intend to get to the end of my life thinking “Coulda, woulda, shoulda.” And I hope you don’t either.

Tangled Up In Pink

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I’ve always loved fall, particularly October, even though in recent years it’s become tinged with sadness. My mom died on October 1, 2003, and my dad’s birthday was October 13; this year, he would have been 80. But those bittersweet feelings seem in perfect keeping with fall. The glory of the brilliant gold and red leaves lies in knowing they can’t last. 

But now, thanks to the pink retail holiday that breast cancer has become, at least in the United States, the black cat and orange pumpkin of Halloween, the crisp blue sky and gold leaves of a perfect fall day, have all been crowded out by pink.

The crowding isn’t just visual. When you blog about breast cancer, October is a land mine just waiting to be stepped on. Do you jump on the pink bandwagon and blog about breast cancer awareness and support, as if it’s the one time of year you can talk about it? Or you resist, lamenting the avalanche of pink products and specials and events that have hijacked the month?

I knew this had become an issue when another blogger asked me if I had any big plans for October blog posts. The fact we were even having a discussion about this made me realize just how much Pinktober has gotten under our collective skin. LIke the pink ribbon itself, it’s a loaded symbol.

The truth is, I don’t have that much to say about Pinktober other than I’m already tired of it and don’t like feeling (self-induced) pressure to write about it. Instead, I’m going to give you a recommended reading list of the best things I’ve read so far.

I mentioned that the pink onslaught seems to be most intense in the United States. Read this wonderful post, “Where There Is No Pink Pandemic,” by Philippa Ramsden at Feisty Blue Gecko, to see how differently breast cancer is viewed in the rest of the world.

One of the best posts I’ve read about what a loaded symbol the pink ribbon has become comes from Jody Schoger at the wonderful Women with Cancer. In her most recent post, Upending Pink, she explains why October has made her uneasy for a long time, and includes some great links to recent news coverage of all things pink. But what touched me even more was her previous post, Left Behind, in which she talked about how the politics of the pink ribbon intruded on something as private as a funeral. (I’ve had similar mixed feelings when accosted by a basket of pink ribbons at a funeral, as I’m sure many of us have.)

One of the best and most consistent critics of pink ribbon culture is Gayle Sulik, who wrote the book Pink Ribbon Blues. She will be blogging 30 Days of Breast Cancer Awareness and her first installment, the Inspirational vs. the Actual, looks great.

Rachel May at the Cancer Culture Chronicles sums up what’s wrong with the typical approach to awareness in Breast Cancer Awareness Jersey Shore Style! All outcomes are good, buying a pink pashmina passes for awareness, and there is nothing remotely related to her experience with metastatic cancer. Apparently, her particular “brand” of cancer is a tough sell. It’s a bit problematic figuring out which shade of lipstick works best with thrush.  

Debbie Woodbury at Where We Go Now used to like pink, and wants us to reclaim its power this October.

You’ll find plenty of thought-provoking reads in these and many other excellent blogs. And here’s wishing all of us a fast month. -Jackie Fox

What Lady Gaga Can Teach Breast Cancer Survivors

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Credit: Rick Diamond Getty Images

Today was a typical Sunday. Chores were over, time for Bruce and me to park our rear ends in front of the TV for some serious Sunday night channel surfing. We were flipping through our DVR list playing “Keep or Erase” and found the Lady Gaga HBO concert at Madison Square Garden. I was ready to vote “Erase” until he flipped it on. It took me all of 30 seconds to become hooked.

Some of the people I like best in this world are gaga for Gaga. They happen to be young and gay, but she crosses all gender and orientation lines. With a boyfriend who hails from Nebraska, Gaga sightings have been plentiful in Omaha. One of our better known oncologists tweeted the most recent one, when she filmed a video on a country road in sweltering 115 degree heat.

I confess to being curmudgeonly where Lady Gaga is concerned. The last time a friend tried explaining her appeal, I dismissed it with a classic walked-to-school-both-ways-uphill-in-the-snow remark. “Madonna was here first and did it better,” I said with the power of my completely uninformed conviction.

I started softening a bit when I saw how funny she was in a couple of “Saturday Night Live” sketches and noticed she can actually sing. But what got me hooked was seeing her talk to her “little monsters,” as she calls her fans, during that concert. Gay or straight, they’re monsters in the sense they feel like outcasts and misfits, the same way she did, the same way many of us who’ve been on the breast cancer journey do.

We’ve traded the confusing and sometimes cruel high school experience for the equally confusing and sometimes cruel healthcare experience. We feel like cogs in a machine, less ourselves somehow after being poked and prodded and cut, less lovable for having scars and pain. We feel too needy or not needy enough, too strident or not activist enough, or like we’re doing cancer “wrong.”

This is where Lady Gaga’s message comes in. Be yourself, she told her monsters. Someone believes in you. Her message to her fans, herself–in a touching scene she talks about how she still feels like a high-school loser–and to us, is simple. You’re perfect the way you are, and you matter. The special ends with her singing a stunning a cappella version of “Born This Way,” the song that’s become an anthem to misfits everywhere. She sings, “There’s nothing wrong with loving who you are . . . I’m on the right track, baby, I was born to be brave.” You were, Stefani, and we salute you. Paws up!

My Other Life

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A few weeks ago Marie Ennis-O’Connor, who blogs at the terrific Journeying Beyond Breast Cancer, invited the breast cancer blogging community to write about our Other Life; to share who we are when we aren’t talking about cancer. She got wonderful responses from Stacey at Bringing Up Goliath and Jody at Women With Cancer, among others. It’s been so much fun to learn more about these great bloggers and great women.

When I started thinking about my other life the thing that surfaced most quickly was poetry. My life is like anyone’s: work, family, friends, volunteering, recreational activities like watching college sports, concerts, travel. But the thing that’s strictly mine and the thing I want to get better at is poetry. When I write for myself, the shape it takes is a poem.

I’ve been writing poems since I was a little kid. I wrote poems through grade school and high school. Then, after taking a couple of poetry writing classes in college and getting a handful of things published, it stopped. I was too caught up in day-to-day life, and my only after-hours writing was freelance articles about technology or public relations. I really thought that part of my life was over, and I missed it but I didn’t try to do anything about it.

Poetry stayed away from my life for close to 20 years, until I was diagnosed with DCIS. Since this is a stage 0 breast cancer, I wasn’t in a fight for my life but it still served as a wake-up call. You could say cancer turned into a weird but welcome muse. Poetry started speaking to me again, and better still, I started writing again. Like before, I’ve had a handful of things published. I have a few different areas I want to dig into, including the effects of digital communications. I’ve written a few poems focused on that, including the sonnet below.

I wrote it last year and had no particular plans for it until I saw a call for entries for the annual Anne Dittrick sonnet writing contest this spring, sponsored by Nebraska Shakespeare. It ended up getting  honorable mention out of 100 entries, so it was printed in the program for this year’s Shakespeare on the Green performances in Omaha. (I believe the “starving artist” stereotype originated with poetry because you’re usually paid in copies. I’ve been paid with money only once, when three of my poems were accepted by Rolling Stone and I got a whopping 10 bucks apiece. Believe it or not, they used to publish poetry back in the ’80s. They only published one of them before they stopped including poetry, which is too bad. Poetry needs as many mainstream venues as it can get.)

21st Century Sonnet

How Shakespeare ever managed, I don’t know.
Although the language mattered so much more
it had to give him confidence to sow
such sublime music, freeing words to soar.
And what of now, you wonder. Well to ask
when texts and tweets and IMs all hold sway.
Can any of us comprehend the task
of holding short attention spans at bay?
I cannot help but think of what we’ve lost
when words are something to fast forward through.
U R the 1? Okay, but at what cost
these shorthand thoughts, what love we never knew?
The music in the bones of words has gone;
without it, can the food of love play on?

If You Knew Then

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Most of us can find one or two things we might have chosen to do differently in our life journey, and breast cancer (or any cancer) is no different. There’s so much to learn, so many decisions to make, so many emotions swirling around in your head.

I can think of two things I would have done differently when I was diagnosed with DCIS, and I’m lucky they’re both pretty minor. The first one falls into the stress reduction category. I had never had a massage until my husband booked a couple’s massage  three weeks after my second-stage reconstruction surgery. I could not believe how relaxing it was and my first thought was, “If only I had done this while I was trying to figure out what to do.”

You know the feeling. You’re faced with treatment choices that range from poor to sad and your head is spinning like a caffeinated hamster on a wheel. I can’t tell you how many times I wished I could climb out of my mind. I think a massage or two would have helped calm the noise in my head. I’ve read since then that there’s evidence massages help reduce stress in people going through chemo.

My other “do over” has to do with biopsies. If I knew then what I know now, I would have skipped the stereotactic biopsy that identified my DCIS and had the surgical biopsy instead. 

Like everything else associated with cancer, this is a highly personal choice and takes a bit more thought than deciding on a massage. I decided after a 60-second chat with the radiologist who found the bad cells on my mammogram. I should have done some homework and talked to my doctor.

I’ve heard from women who wish they had opted for radiation instead of mastectomy, or wish they had known more about their reconstructive choices. Sometimes, like my biopsy situation, asking more questions in advance might have helped. (Which can be easier said than done, because we don’t know what we don’t know.) Other times, even our doctors couldn’t have predicted the outcome, such as post-surgery pain that’s chronic instead of temporary. 

The only comfort I can offer  is that we shouldn’t beat ourselves up. Instead, we can share our experiences. In doing so, we may help each other decide on a path. If we’re past deciding, at the very least we’ll know we’re not alone.

When you think of your own cancer journey, what would you have done differently?

Do Patient Empowerment & Squeamishness Mix?

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Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

Zero Is Not Nothing: Don’t Apologize for DCIS

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If there’s one thing women are really good at, it’s apologizing. I think some of it is simply expressing empathy, as in ”I’m sorry you’re having a bad day at work.”

But ever since I was diagnosed with DCIS/stage 0 breast cancer I’ve heard other survivors apologize for or qualify their emotions and opinions, and I’ve done it too. I think it’s high time we stopped doing that.

I first encountered this when I wrote an essay for the Omaha World-Herald about an unpleasant breast biopsy. I heard from close to a dozen women who had the same procedure and didn’t like it any more than I did. Nearly all of them sounded apologetic or qualified their complaints, as though it’s their fault the procedure sucked. One woman said she’s usually not such a wimp. The point is, she wasn’t a wimp here either. Things hurt or they don’t, and if they do that doesn’t mean we’re somehow weak.

The other thing I’ve wrestled with is whether having such an early stage cancer meant I could call myself a survivor. I’ve talked to other women with DCIS who felt the same way. I touched on this last year in When Do You Become A Breast Cancer Survivor?

The short answer is yes, we’ve earned the right, for a couple of reasons. First, while DCIS isn’t invasive, it can become invasive if left to its own devices. Second, the treatments you go through are the same as they are for invasive cancers. Some women go through surgery followed by six weeks of radiation. (While that timeline is being reduced thanks to improved technologies, it’s still the norm.) Some, like me, get mastectomies. These are not trivial treatments.

I should note that none of the women I’ve met with more advanced breast cancer have made me feel like I had “Cancer Light.” I’ve never been made to feel anything less than part of a sisterhood.

As early stage survivors, we need to follow their example. If you heard a friend had breast cancer, you wouldn’t think her experience didn’t count if it was caught early instead of at a later stage. Do yourself the same favor. Your experience counts, and you’ve earned the right to call yourself a survivor. No ifs, ands or buts.

Why Your New Year’s Resolutions Should Include A Mammogram

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Improving their health is at or near the top of most people’s lists of New Year’s resolutions. We vow to exercise more, eat or drink less, or all of the above.

One of the best things we can do for ourselves as women is to get a mammogram. In spite of the recent confusion about when we should start doing this, mammograms are the only way we’re going to catch breast cancer at its earliest stage.

I’m a case in point. I was diagnosed with ductal carcinoma in situ, DCIS, which is classified as stage 0. Because DCIS is confined to the milk ducts, it was too early to produce a lump I would have been able to feel, and it was caught through a mammogram.

When I started researching DCIS, I read somewhere that 80 percent of all cases are discovered through mammograms. My first oncology consult told me it’s more like 90 percent.

DCIS is a good news-bad news diagnosis. The good news is it hasn’t become invasive yet. The bad news is that it can. Given my specific circumstances, my first oncology consult estimated my risk of getting invasive cancer at 50 percent.

Because I was able to treat the cancer at such an early stage, I was virtually guaranteed a cure through a mastectomy. I’m cancer-free, although I’m taking Tamoxifen to prevent it from showing up in the other breast. I’m very thankful that my breast cancer was caught before it became invasive and required chemotherapy.

Getting a mastectomy for DCIS is a highly personal decision that you need to discuss with your doctor. I know women who have opted for breast-conserving surgery followed by radiation. I know others who chose the bilateral mastectomy as a precaution. I’ve talked about this a lot so bear with me if you’ve heard it before, but you need to make the choice that’s best for you.

While I called out mammograms, other screenings are equally important. I know the importance of colonoscopies first hand, having lost my mom to colon cancer. My first colonoscopy discovered polyps that could have turned cancerous. Because of that and my family history, I’m on a five-year colonoscopy schedule (so far, anyway). If you sail through your first one and don’t have a family history, you can get by with once a decade.

So as you think of your health resolutions for the new year, talk to your doctor about health screenings that make sense for you.

Here’s wishing you a healthy and happy 2011.