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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.

 

Deciding to Change Doctors

14 Jul

June 23, 2011 

After discovering I had “suspicious” mammograms and ultrasounds, I was referred by my primary doctor to a breast specialist. I was decidedly ambivalent about him.  He was certainly charming enough.  I liked him, was even a bit attracted to him.  But I found myself frustrated with his communication skills.  For instance, two different times I went to his office assuming I was getting my biopsies done.  Apparently, this was not on the agenda either time.

In retrospect, I guess I was terribly naïve.  But I’m a hospital novice!  (I am one of those blessed few who has never been admitted to a hospital.)  And I’m certainly a novice when it comes to breast concerns.   This is all new to me.  I wish someone somewhere along the line had explained the course of action a bit better.  All I knew was the mammograms and ultrasound showed two different concerning situations and I assumed biopsies would be the next course of action.  So why was I having repeated consultations with this supposed specialist?  Twice!  It felt wholly unnecessary.  I wasn’t really sure why I was seeing him.  What was he supposed to be doing?  It was all rather strange and confusing.

When I returned for my second appointment – having once again psyched myself up for at least one biopsy – I found out that we were again in consultation mode only.   Frustrating to say the least!  But what was worse was that he told me what he planned to do.  His plan of action was:  1) Do what is called a stereotactic biopsy* on the right breast, where “a cluster of micro-calcifications” had been found.  And 2) schedule me for the OR so that they can remove the nodule found in my left breast and then do a cannulization of the involved milk duct(s).*

It took me a few days to realize that I was pissed at him.   And even more time to figure out why I was angry and what I was going to do about it.

March 10, 2016

Now, almost five years later, I realize that these were reasonable  courses of action.  But I hated the way he presented this to me as if it was a done deal.  If he had said, “I propose we do” thus and so, I might have been more receptive.  But when he said, “This is what we’re going to do,” I got offended.  I’m an intelligent woman and I wanted to be more involved in the whole decision-making process.  And I wanted to understand more fully what was going on and whether or not there were other options.

I don’t think he fully understood that THIS WAS MY BODY we were talking about. This was all an extremely BIG DEAL!  I just wanted to feel more involved and respected.

June 23, 2011

It took me several days, plus breakfast with a friend, plus a therapy session with another friend, plus a day away “on retreat” before I got clear that I wasn’t ready to rush into these procedures and I certainly wasn’t ready to rush into them with him.

Okay, let me back up a bit to that first week of discovering that something was amiss.

I had been remarkably calm during the first visit with my primary doctor and for a large part of the following week.  But when I went for the first consultation with the breast doctor (what I foolishly thought would be a biopsy), I was suddenly freaked out.  I realized I had put all my emotions aside and focused on everything BUT the fact that I could have breast disease, could lose a breast, could need chemotherapy, etc., etc.  And all the sudden I realized, YIKES!  Perhaps I should have sat with this a bit longer.

I called a girlfriend who is a breast cancer survivor.  It was only 7:15 or so in the morning, but as she is a mother with a school-age child, I took the chance of calling.  She was perfect.  She said basically, “Most cancers are quite slow-growing, therefore there is no rush to decide anything.  It is appropriate to sit with your options and consider what is best for you.  A few days are not going to hurt you.”

This was extremely reassuring to me.  Everything had happened so fast.  From the first call to the doctor, I’d had an appointment with my primary, mammograms, an ultrasound, and two brief meetings with radiologist in five days.  And my guess is it would have been even faster except that the Memorial Day weekend fell between those appointments.

Fortunately, I had just begun (finally) to share my experience, my concerns and fears with a few friends.  On Monday, a friend highly recommended this woman who specialized in breast care.  She was noted for her willingness and ability to talk out all the options and concerns of women facing breast disease.  A couple friends recommended her very highly.  She was rather well-known.

It wasn’t until I got clear that I wanted to, at the very least, get a second opinion, that I looked her up online.  To my surprise and delight, she was a doctor!  In fact, she was a surgeon with an excellent reputation.  And here I had thought she was a counselor!  Not only that, but she was open to women pursuing any avenues which might lead to greater healing.  And she was a master Reiki practitioner as well as a doctor!  This was my kind of doctor!

The more I thought about it, the more I realized I wanted to work with Dr. DuPree and her colleagues.  This is the way healthcare should be provided.  It should be caring.  It should be clear.  It should be professional.  It should feel like a team.

I want these people on my team!!!