Tag Archives: stage 0 breast cancer

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.

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?

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.

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.

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.