Tag Archives: DCIS

Yes, Virginia, You Need A 2nd Opinion

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(This is a “dispatch from the past” that originally ran last year. -Jackie Fox) When you’re diagnosed with cancer, certain things have become accepted practice. One is that you take someone to appointments with you because you’ll be too jacked up to process what the doctor says. Another is that you get a second opinion.

While I can vouch for both, I want to focus on the second opinion. I won’t go into all the reasons why it’s a good idea; you can find those through any number of resources. I want to explain why it made sense for me.

I assumed I’d get a second opinion when it was time to talk to an oncologist about treatment. But once I did, getting a second opinion felt urgent, because I didn’t like the recommendation or the way it was delivered.

I should back up the truck and explain that I was diagnosed with ductal carcinoma in situ, a very early stage cancer that is not invasive, although it can become invasive if not treated. It’s often successfully treated with a combination of breast-conserving surgery and radiation. I assumed I would be on this path until two surgeries didn’t get the desired results. Oncologist No. 1, after taking a family history, said, “I know you don’t want to hear this but I think you need a mastectomy.” I’ll spare you the details but the conversation went downhill from there. I felt like I had been sucker-punched.

On to the second opinion, who became my oncologist. The difference was night and day. The first doctor spent 20 minutes and was direct to the point of being blunt. The second one spent an hour and 20 minutes and said I had options, which was exactly what I needed to hear. He ended up making the same recommendation as the first doctor, but told me he would support me if I opted for radiation and surveillance. I chose the mastectomy and have no regrets.

An important thing to remember about second opinions is that even though their recommendations may be the same, you may find one doctor’s style suits you much better than another’s. You will spend a lot of time with him or her and you need to be comfortable. So get that second opinion and don’t worry about hurting anyone’s feelings. It’s your body, your life, and your choice.

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.

Telling Someone You Have Cancer

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When I was diagnosed with DCIS/stage 0 breast cancer, my initial reaction was “WTF!?” with a bit of “Well, here we go” resignation mixed in. It was shocking but not surprising, if that makes any sense.

The next thing that hit me was that I would have to tell my relatives and close friends what was going on. I spent a big chunk of that first weekend on the phone with my husband Bruce’s and my siblings. It wasn’t fun to make those calls, but it wasn’t horrible because my cancer was caught early.

Telling the people closest to you is a no-brainer. Where it gets interesting is when it comes to people you don’t know as well. It’s not quite elevator conversation.

“What’s new with you?”

“Oh, just a little bout with breast cancer. But hey, how about those Huskers?”

I told only a handful of people at work when I was first diagnosed. I told more people after the mastectomy. By that time, I was writing essays about my experience for the Omaha World-Herald and was “outing” myself to some extent anyway, but I was also more comfortable talking about it when the tough part was over.

I think part of is not wanting people to look at you differently or treat you like some kind of victim. The other part is that getting a cancer diagnosis isn’t going to change who you are. If you’re very open about your life, it’s doubtful you’ll suddenly become secretive. If you were private before your diagnosis, you still will be. I handled the news pretty much the way I handle everything. There are a few people I share the most personal things with, and the rest are “Fine, and you?”

You may encounter people I call the “All About Me’s.” It’s natural for our stories, including our cancer stories, to remind people of their own stories, but there’s something a bit different about this crowd. You’ll know, because they’ll manage to make you feel like a bit player in their movie; it’s all about their emotions and reactions. I’ve found with this group it’s best just to smile and say, “Thanks.”

The other thing I learned is that my cancer story didn’t just belong to me. If you have a partner, this is their story too and they need to be able to share it. I talked about how my diagnosis affected Bruce in an earlier post. He needed to be able to tell the colleagues he trusted, just like I did. And that was fine, except I’ve never had so many people hug me at his employer’s annual golf fund-raiser. Luckily they all calmed down by the Christmas party.

Just remember, this is your story. You have the right to share it with as few or as many people as you wish.

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.

Breast Cancer: The Unlikely Muse

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If you’re lucky, cancer can help you reconnect with friends and family. If you’re really lucky, old loves like art and music may reappear in your life as well. When I was diagnosed with ductal carcinoma in situ, if you had asked me what I expected to happen, the last thing I would have said is, “I’m going to start writing poetry again.”

I’ve loved poetry ever since I can remember, and started writing it in grade school. I took a couple of poetry writing courses in college and kept reading and writing after that, getting a handful of them published. One of my proudest moments was having a poem published in a little journal that also included poems by William Kloefkorn (Nebraska’s poet laureate) and Ted Kooser (a two-time national poet laureate from Nebraska.) I even had a poem published in Rolling Stone magazine (which believe it or not, used to include poetry.)

Then it left me and I have no idea why. I stopped writing poems and barely read them. I missed it but I didn’t try to change it. I really thought that part of my life was over.

When I was diagnosed with DCIS some 20 years later, poems started speaking to me again. I remember reading a poem by Franz Wright in The New Yorker the day my oncologist recommended a mastectomy. That night, several tornadoes touched down around Omaha.

The first stanza read:
“What a day. I had some trouble
following the plot line; however,
the special effects were incredible.”

This couldn’t have spoken to me more directly if it were texted. My poetry radar was humming again. Several months later, my husband Bruce and I were vacationing in Cabo and stumbled into a CD launch party at an Italian restaurant. I was beyond floored when the singer started reciting a famous Beat poem, “Truth.” I had loved this poem in high school but hadn’t thought of it in a good 30 years. Turns out her dad wrote it. I found myself reciting the lines with her. G.K. Chesterton called coincidences “spiritual puns” and this sure felt like one. It was around this time that I started writing again.

Since then, I’ve written dozens of poems and had a handful of them published. And I’m so grateful to have this part of myself back. I don’t know how to attribute it to anything but breast cancer. No matter how early it’s caught, it’s still a wake-up call. You start wondering what you want to do with this life you’re so lucky to have.

It’s funny, people ask me about fear of reoccurrence. I’m not worried about my breast cancer coming back. I’m worried about the muse leaving me again. That’s my fear of reoccurrence.

Note: Here’s a poem I wrote about my friend Pam, and included in my book From Zero to Mastectomy. Pam has the face of a beauty queen and the heart of a lion.

Can You Drink After Breast Cancer?

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The alcohol-breast cancer connection was in the news this week. According to a report in the August 23 issue of the Journal of the National Cancer Institute, regular alcohol consumption increases the risk of hormone-receptor positive breast cancer, but apparently does not increase the risk of invasive ductal carcinoma in situ (DCIS). The authors said it was the first major study to look at the potential connection by cancer subtype. The women they looked at ranged from complete teetotalers to women who drink from 1 to more than 14 drinks a week.

When I read about this, I wasn’t sure whether to pat myself on the back or spank myself, since I had estrogen-receptor positive DCIS and I fall into the drinking category. I fall somewhere between role model and dire warning. I got carried away from time to time when I was younger, just as I used to worship the sun. The nice thing about getting older is you just naturally slow down. Hangovers and sweating in the sun have both lost their appeal for me. I’m nowhere near the 14 drink per week tally.

I will tell you that as soon as I was diagnosed I wondered if my youthful misbehavior brought anything to the party, but I decided pretty quickly not to beat myself up. I know women who have never touched a drop of alcohol in their lives and got breast cancer. I know other women who should have had full chest and liver replacements by now and (so far) are cancer-free. I really believe there’s some genetic luck of the draw at play.

I also believe the alcohol question is similar to choosing a course of treatment. We have to weigh the risks and benefits and make the choice that’s best for us as individuals. I like wine with dinner and I never met a glass of champagne I didn’t like. My choice is to continue enjoying that in moderation (although as the saying goes “Moderation in all things, including moderation.”)

The morning after my mastectomy, I asked my surgeon if it would be okay to have a glass of champagne on our 33rd wedding anniversary the following day. He’s one of the more relaxed human beings on the planet, and he said, “Sure, have two if you want.” My nurses were scandalized by that. (For the record, I did have two glasses. Hey, doctor’s orders!)

I guess what I”m trying to say is that I’m trying to strike a balance between my vices and enjoying life. I exercise more, and more often, than I ever have. I don’t text (or drink) and drive. I don’t eat or drink to excess but I think good food and drink are two of life’s great joys and I plan to enjoy them both for as long as I live. Now if you’ll excuse me, I’m going to go have a mimosa.

Let’s Do The Time Warp Again

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Whether you’re newly diagnosed with DCIS or a more advanced form of breast cancer, you’ll notice it has a big time impact. One of the things that surprised me was just how much breast cancer chews up your schedule. I had something like 38 appointments in 20 weeks, and this did not include radiation, which was not in my treatment plan.

In case you’re wondering what all those appointments were for, I had two attempts at breast-conserving surgery, followed by a mastectomy with immediate first-stage reconstruction (This was followed a couple of months later by second-stage reconstruction and augmentation/lift of the other breast, followed by nipple reconstruction. They are not included in my appointment tally.)

Each surgery required consultations and follow-ups with my surgeon and/or plastic surgeon, and my family doctor and oncologist both wanted to track my progress. I believe all these visits were necessary; I just want to give you a sense of how much time the process can take.

The bigger thing you should be aware of is the pressure you may feel to do something right now once you’ve been diagnosed. Do not give in to that pressure. DCIS is very early stage, technically stage 0, so you are not putting yourself at risk by giving yourself time to think.

You’ll need it, because like so many things you don’t realize until you get there, your choice in breast cancer treatment is not written in stone. I had to decide between mastectomy and radiation. I also had to decide whether I wanted immediate reconstruction, and whether I wanted reconstruction on the other breast. The reconstructive choices were no brainers. Deciding between mastectomy and radiation, not so much.

While I was trying to decide, my mind was spinning so much I felt like a hamster on a wheel. I had to give myself permission to take the day off from thinking about it a couple of times, and it wasn’t easy. Distractions like movies gave me something to focus on aside from the contents of my head.

I should add that my time pressure was self-induced. My doctors were very good about giving me time, although my oncologist said I should take some time but not too much. I think he wanted to make sure I didn’t stall myself into total paralysis. I realize this may not be the case for everyone. If anyone, whether a doctor or family member, tries to pressure you into making a decision before you’re ready, don’t do it.

It’s your body and ultimately, your decision. Give yourself time to make the one that’s best for you.

New Study Offers Glimpse Into Future of DCIS Treatment

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Thanks to researchers at the University of California-San Francisco, we have a brand new set of acronyms to add to the breast cancer lexicon. The one you may already be familiar with is BRCA. BRCA 1 and 2 are genes that, when mutated, are linked to hereditary breast and ovarian cancer.

Researchers at UC-SF identified three biomarkers specifically related to ductal carcinoma in situ, or DCIS, a very early stage breast cancer that is confined to the milk ducts. The new biomarkers are called p16, COX-2 and Ki67. (I’d love to know how they come up with these names.) When all three were positive, a woman’s risk of developing invasive cancer within eight years was 28 percent. When all three were negative, the risk was 4 percent. You can read the article at The Journal of the National Cancer Institute. There’s also a more user-friendly article at the New York Times Well blog.

The study is not comprehensive. It included only 1,162 women, the women were treated with lumpectomy only–lumpectomy plus radiation, or mastectomy, are the typical treatments–and it only studied their risk for developing invasive cancer and not recurrent DCIS. Still, it’s a great start.

I’m one of the thousands of women diagnosed with DCIS each year. I chose mastectomy after two attempts at breast-conserving surgery failed to get the desired clear surgical margins. I could have opted for radiation but I wanted a sure bet–DCIS is virtually curable with mastectomy.

Radiation can also be a very good choice but it will depend on your individual circumstance. In my case, I had an awful lot of DCIS. Because of that and some other red flags, one oncologist I talked to estimated my risk of developing invasive cancer within five years at 50 percent.

DCIS is sneaky. Doctors call it “multi-focal”–it could take up residence at one end of a milk duct, or at both ends, and in the middle too. When they biopsied my breast tissue after the mastectomy, some DCIS cells were still lurking in the tissue.

I have absolutely no regrets about the choice I made. But it’s nice to know that in the future, women will be able to make even more informed choices. Just as BRCA lets women make choices based on their genetic predisposition to breast cancer, p16, COX-2 and Ki67 will allow them to make choices based on their individual biomarkers. And that’s good news.

The Only Thing We Have to Fear

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Last week I had one of those light-bulb moments that seem to come out of nowhere. It may have been more of a “discovering the blindingly obvious” moment but I’ll let you be the judge of that.

I’ve been soliciting review comments for a book I wrote about my experience with stage 0 DCIS. I contacted a blogger whose tastes in books is far-ranging and I thought she might be open to reading mine. She agreed to read an advance copy but told me she had to give it some thought because the topic scares her.

That’s when I realized that I’ve sort of gone native when it comes to breast cancer. And by that I mean I’ve gotten so used to dealing with the before, during and after of it that I’ve forgotten that other women are not used to it and are afraid of it.

It reminded me of when I was a mental health worker in a former life. Most of the people I worked with were schizophrenic; some had bipolar disorder. I was so comfortable working with them I forgot that the rest of the world might not share my point of view. Once when my parents were visiting I kept inviting them to come have lunch at our day services center. I’ll admit I was a little slow to catch on. My mom kept politely saying no and I kept pestering her until she finally said, “I don’t think I’d be comfortable.” Oh.

Breast cancer is the same way. I know how scary it is to wait for that phone call, and to wonder how you’ll know if you’re making the right treatment decision. I also know that it’s like so many other things in life, where dreading it is worse than being in it. I’m not saying it’s a fun experience, although you will find moments of humor and love. All I’m saying is you’re tougher than you think. I learned I was.

They say courage isn’t the absence of fear, but the triumph over it. Fear just goes with the territory when it comes to breast cancer. But if your fear is strong enough that it keeps you from going in for a mammogram, please fight it. More of us than ever have good outcomes because our breast cancer is caught early. Let’s say your mammogram does find cancer. What if you had postponed it for several years? All you’ve done is given cancer a head start.

President Franklin Delano Roosevelt once said, “The only thing we have to fear is fear itself.” He was addressing the country during a banking crisis, but he could have been talking to us. You can live with fear. But you may not be able to live with late-stage breast cancer.

Do You Need a Double Mastectomy for Stage Zero Cancer?

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Talk about the devil’s choice. When they discover cancer in your breast, not only do you get to choose from among such not-fun items as surgery, radiation and chemotherapy, but you get to decide whether you want to remove the healthy breast as a precaution.

I’ve talked before about how much I like The New York Times ”Well” blog. On March 8, they posted an excellent story on this provocative topic, citing several recent studies. All of the research was interesting, but what held my attention was the jump in the number of women with Stage 0 cancer or precancer who chose the bilateral mastectomy. While the percentage is low (5.2 percent), it more than doubled in six years.

I was one of 219 people who commented, and our comments were as individual as snowflakes. Many women, like me, had stage 0 ductal carcinoma in situ, or DCIS. Each of us made her choice for her own reasons. In my case, I was really hanging my hat on breast-conserving surgery and radiation until two attempts at breast-conserving surgery didn’t clear out all the bad cells. (And darned if my breast tissue wasn’t still harboring some stubborn DCIS after the mastectomy. I have no doubt I made the right choice.)

Many of the women who commented chose the bilateral mastectomy and have no regrets. For them, the peace of mind was worth it. For me, the bilateral mastectomy was never a consideration, although as I mentioned in an earlier post my husband Bruce asked if I would think about it so I’d never have to go through this again. But the way I see it, I”m basically back at square one and I’m perfectly comfortable there. Others see it differently, and it’s up to each of us to decide what our individual risk tolerance and comfort level is. No one else can make that choice for you, and no one should pass judgment on your decision. If you’re facing that choice as you read this, you have my best regards.