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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.

 

Tips for the Newly Diagnosed

2 Sep

Tips for the Newly Diagnosed

September 1, 2012

I found out this morning that another friend was diagnosed with breast cancer.

It really does feel like a bit of an epidemic.  At least among those in my age range (40- 60 years old.)

Now I know that the idea I had a couple of days ago is right on target.  I need to summarize what I’ve learned in the last fifteen months so that someone who is newly diagnosed will have some tips on how to navigate the first month or two following a diagnosis.

So here you are, Lisa.  And anyone else out there who has just received “the news” that they have breast cancer.

 

  1. Give yourself the time and space to feel your feelings.  It is normal to “freak out” emotionally when you get this news.  You may look normal to the outsider, but on the inside, be assured there is some panic going on.  Even if you seem strangely calm, do not be deceived – you are likely in shock.  You may notice, for instance, that your normally assertive and intelligent self fails to ask for definitions of the many new terms being thrown at you by the radiologist who reviews your mammograms and/or your primary doctor and/or your breast doctor.  You may notice that when asked if you have any questions, your mind draws a blank.  It’s because you’re in shock, my dear.  Believe me, the questions are likely to come later – probably when you’re trying to sleep.  If you don’t give yourself time to feel your feelings and begin to process them, you may find yourself a bit vulnerable to accidents (hopefully minor) or unexpected outbursts.  Like the time I was getting ready to go for a consultation and I found myself bumping into furniture, stubbing my toes, and dropping things.  I was so nervous.  I finally realized that if I didn’t take the time to sit down and really breathe – or cry, I was probably going to really hurt myself!  If you allow time and space for emotional outbursts, you are less likely, as well, to freak out in an inappropriate situation like at work or with your children.  If you actually schedule time to be alone – at home, at a park, or (I know this sounds oxymoronic) with a dear friend, you can allow yourself to scream, to cry, to rant, or to curl up in a fetal position.  Just try not to hyperventilate.  Remember to breathe.
  2. Make sure you’re comfortable with your doctors, surgeons, radiologists.  There is a good chance you are going to be seeing them several times and it is imperative that you trust them and that they show you respect.  If you have a good working relationship with your clinicians, it makes the whole process ever so much easier.  The very last thing you need right now is someone who is overbearing, rude, abrupt, or untrustworthy.  If you have any doubts, get a second opinion from another doctor.  I changed to a second doctor/expert early on and I was so very glad I did.
  3. Take time to make the decisions regarding treatment that are right for you.  This was the most helpful advice I ever got.  My dear friend, Julia, reminded me that the vast majority of cancers grow slowly over a period of time.  If you need a week or two or three to sort through the many options, do it!  This is your body and you must feel comfortable with your course of treatment.  Do not let doctors or clinicians pressure you to do something unless or until you have decided that it is an appropriate course of action for you.  Take the time to do research.  Look online, read books, talk to other breast cancer patients and survivors.  My advice is: use your brain, but in the end, trust your gut feelings.
  4. Change your diet right now.  Chances are there is room for improvement.  If you eat meat and dairy, greatly reduce consumption of both or make sure you are using hormone-free products – preferably also organic and/or locally raised.  (Locally raised livestock are less likely to be filled with all the chemicals and toxins that agribusiness routinely uses in their food “production.”)  Double, triple, quadruple the number of vegetables and fruits you consume.  Most veggies and fruits are not only extremely nutritious and supportive of your immune system, but many actually fight cancer.  They fight free radicals, they slow tumor growth, they neutralize nitrosamines and toxins, they balance out hormones, and they even help make changes at the DNA level.  You can’t afford NOT to eat lots of produce.  (Again, please try to make it organic if at all possible, or from local farms and gardens.)  Consume lots of salads and soups and smoothies.  And throw in things like chopped kale, onions, carrots, and flaxseed into almost everything you consume.
  5. Make your environment as pure as possible.   Drink pure, filtered water whenever possible.  Use natural cleaning products and detergents.  Don’t use air fresheners, hair sprays, and certainly no weedkillers on your lawn or pesticides around your home.  Consider not using nail polish or hair gel or perms or harsh dyes.  And definitely don’t drink out of plastic drink containers that have been left in a hot, sunny car.  And definitely don’t microwave in plastic containers.  (In fact, try to avoid microwaving as there are some studies which show the nutrition is completely lost in the process.)
  6. Cut way back on alcohol consumption.  Quit smoking cigarettes.
  7. Exercise.  Maintain a healthy body weight.  Personally, I find walking good for my spirit as well as my body.
  8. Try to get as much sleep as you can and make your bedroom dark at night. (Except for moonlight.  Moonlight is very good for you.)
  9. Under your doctor’s guidance, make sure you are getting enough Vitamin D.  Those lacking sufficient Vitamin D are more prone to cancer.  Consider also the possibility of adding other medicinal herbs or supplements to your health regime.
  10. STOP DOING THOSE THINGS THAT STRESS YOU OUT!  If you hate your job, now might be an excellent time to leave it.  If the company of certain people makes you anxious, stop spending time with them.  If you are over-committed and overwhelmed, let go of as many commitments as possible.  This is major TAKE-CARE-OF-YOURSELF TIME!!!  Everyone and everything else must take a lower priority right now.  Even if you have children, you must place your needs at the top of the list right now.  After all, if you don’t do all that you can to get well, they could lose their mother.  YOU are the priority!  YOU!!!
  11. Enlist and/or accept the support you need right now.  If someone offers to take care of your kids, if they are a responsible person, by all means, say yes.  If someone offers to accompany you to an appointment or to drive you, if that would be comforting and helpful, say yes.  If someone offers to make you some healthy food, say yes!  Now is not the time to be a martyr and do it all yourself.  Allow yourself to be supported.
  12. If you are uninsured or do not have the funds to pay for your treatment, ask the doctor’s office to put you in touch with a social worker.  All hospitals have social workers and they can help you navigate the system and get the care you need.  In Pennsylvania, at least, if you have breast or ovarian cancer, my understanding is they will expedite your medical assistance application.
  13. Give yourself time to do the work on your emotional, psychological, and spiritual issues.  Oftentimes there is an unexplored or unresolved old issue or habit that can be part of the root of your illness.  For instance, many women are trained from a very young age to take care of everyone else first.  If this describes you, you may need to learn the lesson that you are important and worthy of care.  For others, they may have had a lifelong dream to do something very big or meaningful or special or exciting.  It may be time to dust off that dream.  For others, they may have a deep spiritual yearning for greater connection with the divine or greater peace.  This may be time to deepen your spiritual practices.  Find friends that you trust, a good counselor or clergyperson or spiritual advisor, and give yourself permission to work to get healthier on many levels – not simply at the physical level.
  14. Above all, now is the time for MAXIMUM SELF-CARE!  Now is the time for flowers on your table, delicious healthy food, movies, books, time in nature – whatever represents nurturing to you.  And now may be the time for massages, facials, Reiki, or acupuncture.  (Check with your doctor about any contraindications.)  Treat yourself the way you would treat an especially beloved friend or family member.  You deserve to be treated well!!!

May you be well, friends.  May you be healthy and well. This is a scary time, but it can also be a powerful, life-changing time.  Take it one day at a time.  And take care of you.