Horseshoes, Hand Grenades and DCIS

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.

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8 thoughts on “Horseshoes, Hand Grenades and DCIS

  1. “(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.)”

    Therein lies one of the problems. A mastectomy for an in-situ cancer does not guarantee that cancerous cells will not develop in remaining tissue.

    I’ve written “books” about my experience with a “Yes, malignant,” “No, nothing there,” experience with what ultimately turned out to be DCIS and LCIS. The problem is, I sent them to medical professionals and institutions who seem to be content with not taking the risk to advise against drastic surgery.

    I would never criticize a woman for the choice she makes, and I am not doing so now. But I am very concerned that, due to the publication of your book, even more women will opt for mastectomies, when, what is needed, is a screaming mass voice against the current lack of protocols; the abhorent lack of true medical team approaches, (despite claims to the contrary), including the lack of psychological services.

    I was “lucky.” I trusted my instincts, AND, I was not, and am not, monied. If I had listened to the first diagnosis: cancer – medullary type. On a FNA.I would have no breasts. Had I listened to the second diagnosis – a core biopsy, which yielded nothing, and gone on my merry way, I might well be dead.

    I had to fight tooth and nail for explanations about this rather huge discrepancy, with no support whatsoever. I had the strength at the time to do it, but all of it went into years of straightening out the mess created by slipshod diagnosis and craps-shoot protocols, including the handily-offered, “These are your choices, you make the decision.” Great. Do I have time or the intelligence to attend medical school.

    No one would believe that I could have had both diagnoses. I, too, was told that I did not have breast cancer, after being told that I did. In the end, I “chose” an excisional biopsy with no other treatment. That was 12 years ago. Whether I had had more treatment, or had opted for a mastectomy, I would, I hope, still carry the rage and bewilderment caused the the initial errors. That rage has been put to good use, (although I’d rather not have either it, nor the bewilderment), and I have been able to contribute to some small changes in diagnosis and treatment policy. I’m not suggesting I should be praised for that – it is just an example of what to do when you know the status quo can no longer exist.

    Of course, the fallout continued for years with any physician I encountered. I had to be “nuts” – either because I “wrongly” thought that I had had breast cancer, or because I had not had any additional treatment. Most often, I would plead, beg, and, sadly, cry for any assistance with dealing with the remaining pains, and painful cysts that I continue to have long after menopause. (I was diagnosed just before I turned 50, and began full-symptom menopause at age 52).

    And that brings up the problem with the lack of medical practitioners who know breasts. Not just breasts with cancer, but all breast conditions. I’ve said for years, that if we were seen as a profit-making commodity, like cows, we would have better care. I wish I could be examined by a veterinarian.

    I credit you for giving the name of the ‘exact’ form of breast cancer that you had. It is not helpful to say, “I had breast cancer.” Or speak of “breast cancer” as an all-inclusive disease. Thank you.
    PS To hell with all things “pink.”

  2. Wow. I’m sorry you’re still dealing with pain. I know people who have had painful cysts and I wish I had anything helpful to say. Thank you for commenting and being respectful of other women’s choices. I see so many comments out there that are more like attacks, and yours are not. I agree that a mastectomy is pretty drastic. I initially thought it was too drastic for DCIS, but after weighing the odds of getting invasive cancer (which I heard were 50/50) I decided I didn’t feel like playing them. I know some women go even farther and get a preventative mastectomy on the other breast. For me, no way, but like you, I respect their choice.

    I’m with you on the pink thing. I don’t like pink ribbons any more now than I did before. I will own up to having a hoodie that has a (SMALL) pink ribbon and says “Fight like a girl.” I think we’re getting a bit carried away on the merchandising. But if Komen can help find a cure, I’m all for it.

    • Please research what it is that Komen now does, and does not, do. One thing they did do, if this is an indication of their focus, is sue a small local gathering of people who were having a fundraising event, because they used Komen’s registered trademark – they did not know — and, I’ll use only the first letters here — f t c. And, in my experience, they are merely mega-corporate, having received millions for a cure, and there has not been one step forward in over 25 years, not even for diagnosis, as is plain when so many more women are opting again for mastectomies and ‘preventive’ mastectomies. I’m not saying that rests with Komen, but it bears thought in terms of evaluating supporting them.

      Avon, prior to its association with Komen, offered direct assistance to women who needed it.

      One of the most astounding aspects of all the “awareness” is how little women have been taught – how little information is presented.

      PS Although the first case of breast cancer I encountered was that of a male, I wish that the word “women” predominated the language of breast cancer, rather than “people.”

      Thank you. Best to you.
      A book I found long after I started fighting pink profiteering, is Samantha King’s “Pink Ribbons Inc.” An enlightening read. And there’s a new book on the same subject — I don’t have the title.

      What got me through the swamp was, Susun Weed’s book, “Breast Cancer? Breast Health!” (That is sUn). One always takes what one needs at the time, and it continues to be my most valued reference. Whether or not one embraces some parts of her work, the decision-making process she encourages is empowering. The book is as much about breast, and overall women’s health.

      I was also assisted by a Breast and Cervical Cancer Program in specific city, in the specific state where I had my evaluations in ways that other cities, counties, states, do not interpret the law, nor provide such direct assistance. This, too, is called by so many names, it makes it very difficult to access, and, to this day, it is not made clear that this is not a poverty program, nor is it as limited in scope as it is interpreted to be.

      • Clarification: It was not the surgery that caused pain. There are painful cysts, which, of course, become a source of fear. I noted breast pain, as an illustration of the need for breast specialists who can qualify what the pain is and not just write it off. I don’t know — prescribe cabbage leaf applications — anything, but “get a biopsy.” However, the long needle track from a bx five years ago on the other breast, has given chronic pain.

        Goodbye.

  3. Jackie I was just thinking about you this morning and lo and behold we were leaving comments at Dr. Rob’s site at the same time!! Great minds!!

    First, ditto what Judy says.

    Second, you describe that man as possible professor, doctor, but how about plain old ass! As long as the human body is involved, all bets are off. There are exceptions to everything and the only absolute is there are no absolutes. Anyone with any medical training should know that. He is lucky you are as civil and gracious as you are.

    BTW, I have started a new blog, a darker one, one that focuses just on living with MS (or any chronic disease). Stop by when you have a chance, http://msrenegade.blogspot.com.

    Be well! 🙂

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