Tag Archives: ductal carcinoma in situ

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.

Breast Cancer Is Not Just About You

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In honor of last night’s Twitter #bcsm chat, which focused on how cancer affects caregivers/family members, I’m rerunning a post I originally ran last year. If you’re on Twitter and haven’t checked out this chat, I encourage you to do so. It’s on Monday nights at 9 p.m. Eastern time.-Jackie)

Deciding what to do when you’re diagnosed with breast cancer is one of the loneliest decisions you’ll ever make. Your doctors will give you  their best counsel, but it’s ultimately up to you.

Although you’re the star of this horror show, if you have a family, breast cancer affects all of you. Both my husband Bruce and I felt hounded by pink ribbons in the early days of my diagnosis. We decided to escape by watching the John Adams miniseries on HBO and wouldn’t you know it, his daughter had breast cancer. It was fine until they got to the 18th century mastectomy minus anesthetic. Bruce yelled at me to leave the room. When I came back, I said, How was it?” and he said, “I don’t know, my eyes were closed.”  

Bruce was more scared for me than I was for myself, although he didn’t share his fears with me until I became calmer and stronger. At one point he asked me if I would consider the double mastectomy as prevention, and asked me to think about it. I waited for about 30 seconds and said, “I’ve thought about it. No.” He told me he didn’t want me to die and I told him I wasn’t going to die and preferred dealing with one breast at a time. But first and foremost, he told me he would stand by my decision, and he’s been true to his word. I couldn’t have asked for a better partner to accompany me on the cancer roller coaster. 

Bruce was amazing in too many ways to recount here, but I’d like to share what a great source of humor he was throughout this adventure. (Yes, cancer does lend itself to humorous moments and I would urge you to take advantage of them when you can. Sometimes that’s the only power you have over a situation that sucks.)

When we were waiting for our first consultation with the doctor who would become my oncologist, I said, “Well, at least nothing can surprise me now.” (We had been assuming for two months that I would undergo radiation and had just had a different oncologist recommend a mastectomy.) Bruce leaned over, lowered his voice and said, “I’m sorry–we’re going to have to cut off your head.”

One of my favorite stories about family decision making was in the October 2009 Omaha World-Herald Healthwise supplement. (I can’t link to it for you because it’s not archived online.) The woman’s family voted on a white board posted in the kitchen with headings “Save the Boob” and “Lose the Boob.” (In case you’re curious, they voted to lose the boob.) That’s a family I wouldn’t mind being a part of.

Your turn–how did your family members handle it? How did they prop you up or make you laugh?

Finding Your Stillness

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When you’re first diagnosed with breast cancer,  your mind starts spinning like a caffeinated hamster on a wheel. When I was trying to decide between a mastectomy and radiation for my ductal carcinoma in situ, there were times I wished I could unscrew my head, shake out its roiling contents, and screw it back on.

If I could give only one piece of advice to people trying to figure out what to do, it would be this: Find a way to your stillness so you can make the decision that’s right for you. Not me or 20 other people–you. And just like deciding on a course of treatment, only you know the best path to that still place.

For me, music really helped calm that constant internal buzzing. For you, the answer may lie in meditation or prayer. Other than weddings and funerals, I haven’t set foot in a church for more than 30 years, but I did occasionally pray that I would make the right decision. I also prayed for calm.

Doing things with friends also helped keep the noise at bay, although I would caution you against too much busyness. I cancelled a family vacation while trying to figure out a course of action, because it just felt right in my gut. I needed that time for reflection.

My goal was to reach a place where I wouldn’t be second-guessing myself later, and I never have going on three years out. Whatever it takes for you to reach that place, just do it. It’s not fun to be alone with the contents of your head, but you will need to find that place of stillness. It’s the only way your inner voice, or intuition or whatever you call it, can make itself heard.

A corollary to the internal commotion is feeling like you have to make a decision right now. Trust me, you don’t. With DCIS or early-stage cancer, you’re not putting your life at risk by giving yourself time to think.

Thanks to a mastectomy I’m essentially cured, although I have a standing date with my oncologist every six months and I’m taking daily Tamoxifen to prevent cancer from showing up in my other breast. But the noise in my head and time pressure are back, for reasons completely unrelated to my health. More on that next time.

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.

Breast Cancer Decision Points

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One of the many things I didn’t know about breast cancer before I got a front-row seat was just how many choices it entails. I didn’t realize that so much of the experience wouldn’t have clear-cut, yes/no answers.

You’re confronted by your first choice before you even know you have cancer. When my mammogram revealed suspicious specks, I was presented the choice of a stereotactic or surgical biopsy. I opted for the stereotactic biopsy on the spot, because it didn’t require outpatient surgery. If I had it to do over I would have chosen differently, but that’s a topic for another day. Your experience may be quite different; just be sure to ask about the pros and cons of each procedure.

Once breast cancer is confirmed, the choices start piling up. They vary depending on what type of cancer you have, your family history and your risk tolerance. You may find yourself on the borderline between radiation and chemotherapy, or between surgery and radiation like I was.

I had stage 0 ductal carcinoma in situ, which means the cancer was confined to the milk ducts and hadn’t become invasive (yet). The typical treatment course for DCIS is either breast-conserving surgery followed by radiation, or mastectomy.

I hoped to knock out the DCIS using breast-conserving surgery and radiation. But after two attempts didn’t get the clear surgical margins we hoped for, I decided to stop messing around and get the mastectomy. I opted for a single mastectomy although I know women who chose the bilateral. This is a highly personal choice and only you know what’s right for you.

Your next choices involve reconstructive surgery, with the first and biggest choice being whether you want it or not. I knew I wanted it, so I had to decide whether I wanted tissue transplant surgery or an implant to reconstruct the breast. I opted pretty quickly for an implant, which required choosing between saline and silicone implants. I preferred silicone but I know women who preferred saline, just as I know women who preferred tissue replacement.

The decision-making process doesn’t end there. You can leave the reconstructed breast as is, or you can have a nipple reconstructed and color tattooed in. I opted yes here as well but know women who decided not to take this last step.

And finally, since you may have lost symmetry, you may also choose to have the other breast worked on. I used to say mine resembled a bowling ball and bowling pin until I had the other one lifted so they’d match better. I had this done during the second-stage reconstruction on the mastectomized breast. I’m not sure what other countries do but in the United States, insurance has to pay for this additional cosmetic surgery if you’ve had breast cancer.

These choices can seem overwhelming so be sure to give yourself time to think. The key to making the right ones is to do what’s right for you and won’t keep you awake at night or second-guessing yourself down the road. I’ve never regretted any of my decisions and I wish the same for you.

The Secret Language of Breast Cancer

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In a recent New York Times post, the incomparable Dana Jennings called cancer a seminar. And there’s no question you become a student of cancer whether you want to or not. For him, prostate cancer brought out his inner scientist. You may be an indifferent student, hoping for the cancer equivalent of pass-fail, or you may dig deep and learn everything you can.

I was somewhere in the middle. As soon as my family doctor gave me the news he started tossing out 50-cent words like micropapillary and comedo. I scribbled furiously on the first thing I could take notes on (a bank brochure), guessing at the spelling. I went online to webmd.com and mayoclinic.com to do research and also used my diagnosis as an excuse to buy a stack of books.

I learned that comedo, micropapillary and cribriform are subtypes of ductal carcinoma in situ, the preinvasive cancer I was diagnosed with. I wanted to learn more about DCIS since I had never heard of it, but I didn’t want to know any surgical detail since I was a bit squeamish back then. (Five surgeries later, I’m over it. I even watched my nipple reconstruction, which only required local anesthetic.) As I went through mastectomy and reconstructive surgery, I learned more 50-cent words such as mastopexy (that’s “breast lift” to us civilians).  

Cancer subtypes and treatments aren’t the only new words that will enter your vocabulary.  You’ll also become well-versed in exotic-sounding drug names. I’m taking Tamoxifen to prevent cancer from showing up in my other breast. I’ve heard women discuss the merits of Gemzar and Taxotere, Arimidex and Herceptin.

For those not in the pink ribbon tribe, we might as well be speaking Martian. I was reminded of this after my book launch party last month. Two women with stage IV cancer, the telltale chemo buzz cut and incandescent smiles were tossing out cancer jargon like doctors at an AMA convention. A friend told my husband later she used to think she knew what her friend was going through. Listening to them, she realized she had no idea.

None of us planned to become fluent in cancer, nor do we intend to use language like a secret handshake. If you wonder what the heck your friend is talking about, I’m sure she won’t mind if you ask. It’s just that some experiences come equipped with specialized vocabularies, and cancer is no exception.