Breast Cancer 3.0: An Amazing Community

I read something recently that has stayed with me. In her excellent blog Journeying Beyond Breast Cancer, Marie Ennis O’Connor discussed the loneliness of survivors. You may not be able to find a support group locally, or you may not care to join one. Then what?

That got me thinking about how much reaching out to each other online can help. I touched on this to some extent in a post last year called Breast Cancer 2.0, but at the time I was just getting my sea legs online and my frame of reference was  pretty limited to my own blog. I knew of survivor blogs and online communities but hadn’t checked any of them out.

Now that I have, I’m in complete awe of the communal spirit that’s alive and well online, not only in blogs but in Facebook and Twitter as well. Twitter is the one that really surprised me. More than anything, it puts the conversation in social media. ChemoBabe explains it far better than I can in “Over Our Heads.”

As you venture further online, read first, get comfortable and then please feel free to wade in. You may be shy at first; I remember when I was (which seems hard to believe now). But you’ll be amazed at how many people have been through something similar, whether it’s loneliness, fear or noticing just how absurd the cancer experience can be, and how willing they are to lend their support. It can help you more than you know to offer your support online as well.

More of my representative but very uncomprehensive list of favorites follows. Watch for a follow-up post on some of my favorite doctor blogs.

Pink Link. An online community for women with breast cancer and caregivers. Its founder Vicki Tashman saw a resource gap and decided to fill it.

Awesome Cancer Survivor. Alicia Staley came up with the very funny What’s Your Cancer Age calculator, a twisted take on the popular Real Age calculators.

The Breast Cancer Culture Chronicles. Anna Rachnel is scary smart and wicked funny. Check out how she dissects Komen’s finances in her two-part Komen by the Numbers. Someone needs to turn her loose on healthcare reform costs. She recently started a new blog, Can-Do Women.

Bringing Up Goliath. Stacey calls her musings about breast cancer and motherhood mundane. They are anything but, as evidenced by Get It Where You Can.

Debbie’s Life-is-Bigger-Than-Cancer Blog. Her post Blessed Instead of Depressed is a heartfelt look at chasing the demons of depression. 

Uneasy Pink. Another sharp observer of the culture, aptly blended with the personal. Katie’s intelligence is matched only by her taste in poetry. Read Almost Yesterday’s Opposite and you’ll see.

Women With Cancer. Jody Schoger is a wise writer and tireless researcher. Her Dearest Thyroid: I Was Wrong , an unflinching look at thyroid cancer, has been passed around by doctors and “civilians” alike.

I’m barely scratching the surface, but there’s an amazing community of supportive, intelligent, funny women out there, and you’re welcome to join. You don’t have to go through it alone.

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If You Knew Then

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?

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

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

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.