By now, most of you have heard the news that Martina Navratilatova was diagnosed with breast disease.
I avoid all sports like the plague that they are. Anybody who enjoys spending time in front of a TV eating chicken wings while they watch people play with balls is a mystery to me. (Hi honey!) Therefore, I know nothing about this woman, except that she played tennis and possibly made money doing it. If my Jeopardy question was "Who is Martina Navratilova?" I'd have answered "What is a tennis player?" but if they asked me if she'd ever won a tournament or made a perfect score of Love, I'd have had to switch categories to "Beers from Around the World."
So, when I got a google alert with her diagnosis, I almost ignored it - after all, she's no Maura Tierney - except that the blurb in the article actually said that she was being treated for pre-cancer.
The exact quote was, "DCIS is the most common type of non-invasive breast cancer and is sometimes referred to as Stage 0 or precancer."
Now, you cancer-free folk don't know this, but calling DCIS "pre-cancer" is sort of a controversy in Breast Cancer World, and I'm likely to get hate mail for even mentioning it. People are very protective of the dangerousness of their disease and believe "we are all in this together."
Except that we are not.
You can't compare the experiences of a woman with DCIS with the experience of a woman with Stage IV breast cancer. I've heard people try, and I understand that the fear seems the same to them, but it's unreasonable, irrational fear. You don't die of DCIS.
What makes cancer dangerous - what makes cancer CANCER - is that it is invasive. Which DCIS isn't. Invasive means the cancer cells aren't trapped in one spot, but have spread to other cells within the area where they arose, dancing and mating, and their uncontrolled free spirit have given them the ability to spread throughout the body.
Which uptight, confined, rigid DCIS cannot.
Cancer, by definition, can kill you. DCIS? Not so much.
DCIS (Ductal Carcinoma in Situ) cells don't behave like invasive cancer; they don't have the capability of spreading and growing in distant body parts. They are abnormal cells that line the ducts of the breast, but they will never spread. It isn't life-threatening and has a nearly 100% cure rate. Proposals have even been made to change the name to remove the word "carcinoma" from this diagnosis. However, the media has not picked up on this at all, preferring to jump on the pink ribbon bandwagon and promote cancer fear. So seeing it mentioned as pre-cancer in this USA Today article startled me.
Way to drop the ball on the fear-mongering, USA Today.
Now, before you stop reading and pick up your poison pen to write me hate mail saying I'm insensitive to the suffering of women with DCIS, let me say this:
I think it's the hardest breast disease to deal with.
Aside from Stage IV, which goes without saying.
You see, the unfortunate thing is sometimes DCIS changes character and becomes invasive. And, nobody knows why, how, when, or if. A woman might live her entire life with DCIS in her breast and never know it. She might get DCIS that disappears and never realize she had it. But sometimes a switch turns on and it becomes invasive cancer that can kill. Nobody knows when/why/how or to whom this happens.
So, it has to be treated as if it was early stage invasive cancer.
Along with my 3.4 centimeter largest invasive tumor (out of 3 total), I also had 4 centimeters of DCIS. Did my invasive cancers arise from my DCIS? Maybe. Likely. Nobody knows.
No question: a woman with DCIS has to make an agonizing decision. While she will escape chemo, she may have to take tamoxofen, she may have to have a lumpectomy, she may have radiation - and she may even have to have a mastectomy - knowing she doesn't have cancer, and knowing she never might. Worse, unlike the women with the BRCA genetic mutation who have a 60% chance of getting cancer, she doesn't even know her odds of it turning invasive. It might be zero or 100. There just isn't the data to tell yet.
And yet, she has to take that leap and cut her breast off.
At least with me, I had no choice. It was clear cut. Mastectomy and chemo, or eventually die.
That's not the case with DCIS, and that is why, I believe, so many women don't want to take the word "carcinoma" out of a DCIS diagnosis, and why it is so controversial in Cancer World. It's why many doctors don't want to change their wording either. You need that word to make the decision okay.
As mammography screening gets better, more and more woman are being diagnosed with the disease. What is not known is if there are more women than ever before with it, or if it just went unnoticed and women lived full lives with it, like many men do with prostate cancer.
Much more studying needs to be done on this.
So, Martina, who technically never had cancer, and who never had a disease that could kill her - who only had an increased risk of getting invasive cancer - she is going to become the new poster woman for breast cancer.
I'd much rather she use her platform and status to highlight the difference between DCIS and invasive cancer - not to denigrate DCIS, but to help solve the problem. I'd like her to educate people by explaining she didn't have a dangerous invasive cancer but still had no choice but to have disfiguring cancer treatment. I'd like her to use whatever fund-raising skills and name recognition she may have to promote research that will find out which and why some DCIS cells will become invasive and some won't, so women don't have to go through barbaric treatment unnecessarily.
Someday, I'd like the Jeopardy category involving her to be "The tennis player who helped prevent the most mastectomies?"
"Who is, Martina Navratilova?"
In case you are interested here are a few links about DCIS from legitimate sources:
Cancer.gov description of DCIS
University of San Francisco
Dr. Susan Love
Abstract from the National Cancer Institute on Medscape
Pain and Frustration
1 week ago