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The Case for Doing Nothing

30 Oct

I never buy Time magazine.  But while at the airport looking for something to read, the provocative cover caught my eye.  On it was a nude woman, hand over her breast, with the big caption, “What if I decide to just do nothing?”  The subtitle?  “Breast Cancer’s New Frontier.”  Author, Siobhan O’Connor.

I had to read it.

I was thrilled to read that some doctors – surgeons, even – are beginning to realize that many women diagnosed with early stage breast cancer are being pressured to aggressively treat their condition when maybe sometimes a wait-and-see-approach would make more sense.

Currently, 20-25% of all breast cancer diagnoses are DCIS (an acronym for ductal carcinoma in situ.)  DCIS means that all cancer cells found are contained within the milk ducts.  A recent study revealed that the mortality rate for women with DCIS is 3% regardless of how she is treated!  And this survival rate is similar to that of the general population!

In other words, many women are being “massively overtreated.”

I was horrified to read that one woman when informed she had DCIS was then told there was an opening the following week for a mastectomy.  Pressuring someone – directly or indirectly – to remove a breast when she has Stage 0 cancer is unconscionable, in my book.  Fortunately this woman got a second opinion and asked the big question, “What if I decide to just do nothing?”  And, to her credit, this second surgeon admitted, “Well, some people are electing to do just that.”

When I was diagnosed with DCIS in 2011, like all people who hear the word “cancer” directed at them, I was in shock.  I couldn’t even begin to think of intelligent questions to ask.  I couldn’t wrap my head around any of it.  Fortunately, I had several cancer survivor girlfriends to call upon for advice and support.

Julia gave me the best advice, hands down.  She said, “Most cancers are very slow growing.  It’s okay to take the time to make your decisions.  And once you do, you’ll feel better.  This time (right after the diagnosis) is the scariest part.”

Once I heard that, I took a metaphoric breath and dove into research.  I decided I wasn’t going to jump the gun and blindly do whatever I was told. And then I, too, got a second opinion.  The first breast specialist had blithely said to me, “Here’s what we’re going to do.”  Excuse me?  Don’t I get a say here?  This is my body; these are my breasts!

And so, like the woman featured in the article, I also made a decision to do much less than the normal protocol.  Desiree Basila declined surgery, radiation and chemo but decided to take the drug, tamoxifen, which blocks the estrogen which often accelerates the growth of tumors.  Then she would get regular mammograms and MRIs.  I, on the other hand, chose to get a lumpectomy but decided to forgo the tamoxifen and the radiation, both of which were strongly suggested.  In fact, I refused to make an appointment with the radiologist because I knew he would pressure me to submit to radiation therapy.  (I also changed my diet and lifestyle.)

Dr. Eric Winer, director of breast oncology at Dana-Farber Cancer Institute, expresses the conundrum of today’s thinking oncologists: “Our two greatest challenges are figuring out better treatments for the 40,000 women who die of breast cancer every year, and at  same time, figure out who, on the other end of the spectrum, is getting exposed to needless toxicity.” (sic)

Absolutely.  You don’t have to be a surgeon to know that radiation causes cancer or that almost all drugs have challenging side effects.  The benefits must outweigh the risks.  “First do no harm” (or words to that effect) is part of the Hippocratic Oath that all medical doctors take.

At long last, there appears to be a gradual willingness on the part of many oncologists to admit that sometimes the treatments being offered are not necessarily necessary and therefore they don’t always warrant the risk.

Author Siobhan O’Connor also makes the extremely valid point  that the word “cancer” is almost, without fail, a very scary word to hear.  But that same word is used to describe a low-grade DCIS that may never be life-threatening as well as a rapacious Stage IV cancer.  This often results in excessive fear that sometimes promotes what could be considered overly drastic treatments.

I love the ending sentence of this article when Basila encourages us to think of quality of life when making decisions regarding breast cancer treatment options.  She says, “I think we really hurt ourselves by trying to just not be dead.”

I believe it is the responsibility of clinicians to be careful how diagnoses are presented so that patients do not unduly panic.  We can also hope that oncologists won’t push certain treatments simply so they can theoretically avoid the possibility of malpractice suits by not treating aggressively.

If you are a woman with DCIS, I encourage you to get as well-informed as possible.  Let’s not blindly put our faith in our doctors and mutely do whatever they suggest.  Let’s do as much research as we can and ask as many questions as necessary.  Let’s find the clinicians who respect our questions and consider all the options.  Then make the decision that’s right for you.  Go full-on with both guns blazing, if that’s your choice.  Just don’t assume it’s the only choice.

 

Blessings and good health to each one of you.