Treatment for stage 0 breast cancer is definitely real

I had never heard of ductal carcinoma in situ before I was diagnosed with it. Nor did I have a clue that breast cancer could be classified as stage 0; I only thought it came in stages 1 through 4. And I’m far from alone; most people I talked to had never heard of it either, including a couple of experienced healthcare PR pros.

This point was brought home to me last weekend, when I did a book signing at “Bodies: The Exhibition” in Omaha. The most interesting moment was when an older, upper-middle-class couple came up to me. The man spoke; the woman stood mutely at his side as wives of that generation are likely to do.

“We were just wondering about your title,” he said. I explained that From Zero to Mastectomy was a play on from zero to 60, and before I could mention the subtitle’s reference to stage 0 cancer, he said, “Well, we were just wondering where that came from because there is no such thing as stage 0.” He looked at me and waited, with a look of absolute confidence on his face.

I looked over at his wife; no help was forthcoming there. She had the frozen smile of someone who’d been through this hundreds of times on who knows how many topics. So I just said, “I never heard of it either until I was diagnosed with it.” He didn’t respond; he just turned away and off they walked.

I don’t know what his deal was; retired professor? Doctor? Professional hair-splitter? I do know that DCIS is noninvasive because it’s confined to the milk ducts. Some call it precancerous. That’s the good news. The bad news is that it can become invasive if not treated, and treatment is the same as for invasive cancers. DCIS has varying degrees of aggressiveness, with some  types more likely to become invasive. You need to go over your specific circumstance with your doctor, weigh your risk tolerance, and make the decision that’s right for you.

As to whether it’s “real” cancer, my oncologist used that word one day, after I had become comfortable with him and with my decision to get a mastectomy. He told me I’d need to come back every six months for regular checkups, and said it would be every three months if I had “real” cancer.

He wasn’t being snarky, so I pounced and said, “It’s close enough! Someone sign me up for the fake mastectomy!” We laughed about it, and that’s become our running joke.

So maybe the old man was right. If you believe cancer by definition is invasive, then perhaps stage 0 is an oxymoron. But while the cancer may be “fake,” the treatment is very real. There’s an old saying, “Close only counts in horseshoes and hand grenades.” Perhaps we should add DCIS to that list.

Jackie Fox is the author of From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer, and blogs at Dispatch From Second Base.

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  • Elyn Jacobs

    Great post Jackie!!! It saddens me that someone might not consider DCIS as cancer or to dismiss it as nothing of importance. Ignorance is not always bliss….

  • Jackie Fox

    Thanks, Elyn. Yeah, I don’t get it either. I was a bit flummoxed by that guy at the book signing. I’ve heard from other women who had friends or family members wonder what the fuss is about. (File under what NOT to say to someone with DCIS! Hello!)

    My oncologist is a different story. He is very mindful there’s a person attached to the breast and spent an hour and 20 minutes with my husband and me the first time we met, to explain what was happening and what the treatment choices entailed. He totally gets it, he just went academic on me for a minute :) He and I did an educational event some months later and he told someone “I have to say early stage cancer or she’ll kill me!” He’s very funny.

  • Christie B

    Your post really gave me some insight into how a DCIS diagnosis is understood differently among patients and academics/providers. The pedant in me wonders why the same people who would round DCIS up to cancer would not consider a BRCA carrier diagnosis to also count as “cancer” when it carries an even higher risk of invasive (“true”) cancer and many carriers opt for mastectomy and/or medications such as tamoxifen. On the more practical side, how does this muddying of the language affect how folks with invasive and advanced cancers understand their diagnoses and prognoses?

  • Ann Gill

    Great post. I was diagnosed in 1985, age 25, with what I now know was DCIS. I don’t know whether that’s what it was called then; certainly no-one ever explained it to me. I did ask if it was actually cancer and was told, “there’s a 90% chance it will be looking at the nuclei”. For the next 24 years I never understood how I had a palpable lump if it was only ‘nearly’ cancer. I had a wide excision and radiotherapy, which in those days included the axilla… and I now have lymphodoema. Then in 2009, during routine screening, a new invasive cancer was found. Again, luckily it was early; low grade and stage 1, but a mastectomy was advised because I couldn’t have radiotherapy twice to the same side. These days, so much more information and support is available, plus the internet. I now know all about DCIS, and stages and grades of this awful disease. Shame it took a second dose for me to find out!!

  • Skeptical Scalpel

    While I appreciate your situation, I think it should be noted that the treatment of DCIS is controversial. Many authorities recommend breast conserving surgery with or without radiation therapy for many varieties of DCIS. UpToDate, an excellent source of information on nearly all medical topics, has a nice discussion on DCIS but it requires a subscription. The NCCN Guidelines for non-invasive breast cancer are free and available here

    • Jackie Fox

      Completely agree with you that treatment is controversial. I recall reading something in the New York Times positing that it’s overtreated. I still think you have to look at your individual circumstance and risk tolerance and discuss it with your doctor.Thanks for sharing the link to NCCN guidelines!

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