“Into the Abyss: Stage Zero DCIS” 2

Hello bOOb Bloggettes!

I’m going to re-post one more important blog that I wrote before many of you joined us. DCIS is a very pervasive condition and largely over-diagnosed and over-treated so I think it’s important women know about it. Happy New Year and I’ll write anew in January:

Today we’ll launch into the rarely talked about but oh-so important topic of DCIS or Ductal Carcinoma in Situ — as this “cancer” represents about 20-25% of all breast cancers. (Read on to see why I wrote “cancer” with quotation marks.)

Now, I don’t know about you, but before I started this project I’d never heard of DCIS.

First, let’s define DCIS: This pre-cancer starts in the ducts in the breasts and can become “invasive DCIS.” But the DCIS nomenclature in itself is a bit misleading because the phrase “in situ” is latin meaning “in place” — so how could it become invasive and still be called DCIS?

DCIS “Stage Zero” (they literally ran out of cancer Staging numbers so they had to work backwards for this one!) is actually not a “cancer” per se; it’s a “precancerous” condition because it has not become invasive cancer. If it ever does become invasive, it is no longer Stage Zero and would then be deemed a later Stage cancer, e.g., Stage 1, etc.

Further, I found this interesting tidbit during my research: The medical community is actually debating whether to change the name DCIS by taking out the word “carcinoma” because that word is scaring the bejesus out of women. Many of them are in turn running to the nearest breast cancer surgeon to have a prophylactic mastectomy in case it does become invasive later — and this is totally understandable!

But the big question they’re also discussing in the literature is this: Is treatment of DCIS really necessary?

I know after living through my husband’s lung cancer (he passed away 12 years ago) that when someone hears the word “cancer,” or “the C word” as I call it, most tend to freeze up — again, totally understandable! Some follow the White Coat into invasive treatments without asking hardly any questions (that was my husband), while others find the strength to put off treatment a bit until they do their own research and mull over treatment options for a while (I’m in awe of these people and know several who are beating the odds using this approach — but that’s another blog for another time).

Know this about DCIS: It’s only found on the mammogram X-ray film. And before mammography’s use as a screening tool, it only represented 3% of breast cancers. And now? It’s jumped to 20-25%. DCIS has these phenomena associated with it called micro-calcifications that can be an indication of cancer. In fact, some other tumors have calcium deposits associated with them that are also detected on a mammogram. But when a radiologist sees micro-calcifications, they suspect DCIS.

Unfortunately what happens next is what I explained earlier: Most times, the woman is rushed into the decision of whether to get a mastectomy and/or radiation. (Chemo is generally not given to Stage Zero DCIS, but I would personally question the need for radiation following a mastectomy or lumpectomy, if I was a patient with Stage Zero DCIS, as radiation in itself is carcinogenic).

Now, please remember, Stage Zero DCIS is a precancer and not an invasive cancer. In fact, as mentioned earlier, there’s A LOT of discussion in the literature about whether to treat these women or not (or at least stop scaring them into immediate treatment) versus taking the “watch and wait” approach.

To that last point, here’s one interesting snippet I came across on the American Cancer Society’s website: Men who get Stage Zero testicular cancer are indeed told to “watch and wait.” Now why is it that men are told to hold onto their Stage Zero huevos yet women are rushed into treatment for Stage Zero of their breast???

The National Cancer Institute summarizes it pathetically this way: “Because doctors cannot easily distinguish cancers and cases of DCIS that need to be treated from those that do not, they are all treated.”  In other words, they’ve taken the approach of “better safe than sorry” — and I think it should be the woman’s prerogative to be treated, if she wants. But medicine should be clear about the risks of treatment, such as: 1 in 400 women die within 30 days following a mastectomy, largely due to infections. That’s a scary statistic, in my view, and one most likely not conveyed to the patient prior to surgery.

Also, one interesting study I came across in the literature found that around 12% of female cadavers were discovered to have undiagnosed DCIS following an autopsy — and none of these women had ever had a mammogram so their DCIS went undetected, undiagnosed, and untreated! They had simply died with this precancerous condition in their breast(s) and went happily on with their lives.

So this is what the debate is largely about: The over-diagnosis and thus over-treatment of women with the pre-cancerous condition of Stage Zero DCIS. And remember, it represents 1 out of 4 or 5 breast “cancers.”

When I interviewed the Chief Medial Officer (who was an oncologist) of the American Cancer Society, he admitted that when medicine does screening for certain cancers there is over-diagnosis (and treatment). And it’s not only mammography screenings that are leading to over-diagnosis/treatment, but also other areas in medicine that I personally thought were about 100% accurate about 100% of the time, like…pathology.

But no.

I have come to learn in speaking with doctors and also through literature searches that when a pathologist reads a biopsy, his diagnostic opinion is subjective. In other words, it’s up to his/her interpretation of what he sees on the slide holding the tissue in question — and I know several instances personally of friends and others that were misdiagnosed via pathology. One woman had a “partial mastectomy.” Another woman was diagnosed with breast cancer and almost rushed into treatment. Luckily she took a breather, found my film on the internet (in which two doctors say “get a second opinion,” including ACS), and was found NOT to have cancer after going to another doctor.

How scary is that????

One doctor I interviewed said he worked closely with radiologists and breast surgeons, and following a lot of mastectomies he witnessed — when a pathologist reviewed the “cancerous” breast material again — he couldn’t believe how many women had been misdiagnosed both by the mammogram machine and also via faulty pathology findings. But alas, the women’s breasts had already sadly been amputated.

There’s also another less common beast called Lobular Carcinoma in Situ (LCIS) that starts in the lobules, or milk glands, of the breasts. These women have the same problem with being over-diagnosed and sometimes frightened into needless treatment upon hearing the word “carcinoma” so we will look more closely at LCIS in an upcoming blog.

To be sure, DCIS is a tricky one to deal with. l just wanted women to be aware of what was going on and what was being debated, as DSIC is quite common. Hopefully, you can now  talk with your doctors loaded with some facts if ever diagnosed with this bugger.

Blog at you soon, thanks for reading and helping to spread the word! (Please see the “share” links below).

Megan

Megan Smith, M.S.
Director, bOObs: The War on Women’s Breasts

waymarkproductions.com