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 opinion.  Fortunately this woman got a second opinion and had the courage to ask a new 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.

My friend, 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.”  She told me that this time, immediately following the diagnosis, was the scariest part.  She assured me that once I made some decisions, I’d feel better.

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.  The first breast specialist I was sent to blithely told 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!

He made it easy for me to decide to get a second opinion.

And so, like the woman featured in the article, I also made a decision to do much less than the normal protocol.  One patient, 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.  She decided she would then 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.)

There are many options and choices.  There is no one-size-fits-all when it comes to treating cancer.

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.  Unfortunately that same word is used to describe both 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.”

If you are a woman with DCIS, I encourage you to get as well-informed as possible.  Do as much research as you can and ask as many questions as necessary.  Find the clinicians who respect you and your questions and who consider all the options.  Then after you’ve given yourself sufficient time, make the decision that’s right for you.  Lead with your brain, then go with your gut.

Blessings and good health to each one of you.


7 Responses to “The Case for Doing Nothing”

  1. Susie Joyce February 27, 2016 at 10:14 pm #

    I just read your blog. It is fabulous. I had DCIS exactly 2 years ago. Lumpectomy and radiation. No Tamoxofin. 1st year mammogram clear, but not this year. Suspicious calcifications where the lumpectomy was performed. They want to biopsy. I find it really, really strange that it would come back so quickly after my treatment protocol. Statistically, it shouldn’t. I have gone for a second opinion at a top hospital in Chicago with a known DCIS surgeon, however, from my mammogram results, she is also recommending biopsy, and is almost certain the DCIS has returned. So, she is talking mastectomy as if it’s a done deal. I am going to have the biopsy done, but I am hoping to God that it’s negative. These doctors do truly pressure you, but I feel like if I don’t get the mastectomy, then what if I’m the one who gets the invasive cancer. So much worry over a “non cancer.” It’s so frustrating not to have any clarity:((

    • cindygreb March 10, 2016 at 1:46 am #

      Dear Susie,
      I can so relate to your frustration and angst about this situation. I, too, had a calcification near the site of my surgery. (Which turned out to be negative, after another painful biopsy.) I want you to know that my radiologist seemed to imply (if I’m not mistaken) that having calcifications following radiation therapy was not that unusual. I wonder if there’s a way you can check with another radiologist as opposed to another surgeon, who, no doubt, is more likely to recommend biopsies in the hope of further surgeries. (Not that I’m cynical or anything.)
      I truly wish you could find an oncologist who does not default to aggressive action but at least considers the possibility of other viable options. Before you make any decisions, I would strongly encourage you to take a small retreat and try to obtain some clarity within your own body and spirit. ONLY YOU know what feels best for you to do. Trust your gut. Listen to your brain, and trust your gut. Whatever you decide, I support you 100%. May all worry be for naught. May you be happy and healthy and whole. Big blessings to you, Susie! (PS I’m also sending you an email….)

    • cindygreb March 10, 2016 at 3:34 am #

      Susie, here is another response to your post. (Thank you, btw!)

      Hello sister DCIS survivor! I hope you don’t mind if I offer additional encouragement and suggestions regarding your recent reply to The Case for Doing Nothing blog post. I decided to share some more thoughts with you in this slightly more private venue.

      So, some devil’s advocate thoughts: IF (capital letters “IF”) you do discover you have DCIS again, there are certainly appropriate protocols that do NOT necessarily include a mastectomy, which is certainly an aggressive approach for cancer cells still contained within the walls of the milk ducts! DCIS, even if a return DCIS, is not, by definition, invasive; it is contained. I understand that return DCIS could be concerning, but please, please, do not let them pressure you into losing your breast if that is not something you want to do or feel comfortable doing. There are other options to try first, if you choose. For instance, taking tamoxifen or some other appropriate drug could potentially be one course of action, especially since that wasn’t tried last time.

      If you just “feel safer” removing a breast, then obviously, listen to your gut. I support you 100% no matter what you choose. But please do not let them guilt you or heavy-hand you into doing something you don’t want. It is essential that you feel comfortable with your course of action, and only you can decide what you feel comfortable with.

      I hope you allow yourself some time to come to decisions that feel comfortable to you.

      May you be healthy and happy and whole.

      • Liz May 22, 2016 at 12:07 am #

        Me too! My breast surgeon has been very honest with me, I think. Having bloody nipple discharge, he did a nipple excision expecting to find a papilloma but I had a tiny dcis (2.5 mm gone removed with clean margins during the excision). He was firm that I didn’t need a mastectomy despite my muttering about it. The surgeon said I might not need radition but did send me to talk to a radiation oncologist. The rad told me all the reasons why i should have it. With a ow Oncotype score and surgeon’s okay, I skipped radiation but do take an anastrozole. I would have refused tamoxifen. I had months months since the excision. In one the comments above, someone wrote about the effect of the biopsy and my surgeon said exactly that – that the biopsy creates its own debris which shows up on mammos or mri’s. His most recent comment is that i’ll be fine if they can just stop sticking needles in me! (meaning now it’s that seeing debris that is causing more biopsies). I’ve done a lot of research which has helped me a lot, but nothing can replace having specialists who I trust and who respect me.

      • cindygreb May 25, 2016 at 8:11 pm #

        Sounds wonderful, Liz. So great that you have a physician you can trust! He sounds great! May you continue to heal and prosper and thrive. Blessings to you.

  2. Amy Kilbridge December 30, 2017 at 12:53 pm #

    Thank you Cindy, for your blog. I was diagnosed with atypical lobular hyperplasia after a biopsy, and with DCIS after a lumpectomy. I received very little information about what those terms mean, let alone other options besides the lumpectomy.
    The next time I get a mammogram, I’ll be prepared to ask questions now that I have read about your experiences and those of your followers.
    I so appreciate you sharing your story here.

    • cindygreb January 22, 2019 at 8:53 pm #

      Dear Amy,
      Thank you for taking the time to make a comment. Please forgive me for not seeing it sooner!
      I truly hope that your journey has unfolded in a good way and that your clinicians were helpful and responsive to your questions.
      May you be healthy and well!
      Most sincerely,

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