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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 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.

 

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Tips for the Newly Diagnosed

2 Sep

 

I found out this morning that another friend was diagnosed with breast cancer.  It really does feel like a bit of an epidemic–especially among those over 40 years of age.

It’s such a shock when we get this news.  It brings up so many questions–of mortality, of whether we’ll lose a breast or our hair, of what will happen with our jobs and our children.  It can be completely overwhelming.  I know because I’ve been there.  And so, as a veteran of this fight, I’d like to pass along some tips–not just regarding treatment, but about the need for radical self-care, about changes we can make in our environment and lifestyle, and not least of all, the spiritual ramifications of finding out we have what could potentially be a life-threatening disease.

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

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, there will certainly be 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 clinicians you suddenly have appointments with.  You may notice that when asked if you have any questions, your mind draws a blank.  Don’t worry.  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 with the breast specialist, for instance.  I found myself bumping into furniture, stubbing my toes, and dropping things.  I was a wreck.  I finally realized that if I didn’t take the time to sit down and really breathe—or cry, as I found out—I was probably going to really hurt myself!  If you allow time and space for emotional outbursts, you are also less likely to break down in a less-than-ideal situation–like at work or in the middle of a grocery store or with your children.  If you actually schedule time to be alone—at home, at a park, or with a dear friend (which I know is a bit oxymoronic, but you know what I mean), you can allow yourself to scream, to cry, to rant, or to curl up in a fetal position.  It’s really essential to give space for all your feelings.

Make sure you’re comfortable with your doctors, surgeons, radiologists, etc.  There is a good chance you are going to be seeing each of your clinicians several times and it is imperative that you trust them and that they show you respect.  If you have a good working relationship with them, 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 whatsoever, get a second opinion.  I changed doctors early on and it made a world of difference.

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, who was the first friend of mine to be diagnosed, reminded me that the vast majority of cancers grow slowly over a long 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.

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 things like chopped kale, onions, carrots, and ground flaxseed into almost everything you consume.

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.  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.  (The plastics leach into the water or food.)

Cut way back on alcohol consumption and try to quit smoking cigarettes.

Exercise.  Being overweight is one of several risk factors for breast cancer.   If possible, try to find ways to move more.  Personally, I find walking outside good for my spirit as well as my body.

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.)

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.

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!!!

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, and if that would be comforting and helpful, say yes.  If someone offers to make you dinner, say yes!  Now is not the time to be a martyr and do it all yourself.  Allow yourself to be supported.

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 navigate the system and help you get the care you need.  I learned that in Pennsylvania, for instance, if you have breast or ovarian cancer, they will expedite your medical assistance.

Give yourself time to work on your emotional, psychological, and spiritual issues.  Oftentimes unexplored or unresolved old issues or habits can be contributing factors to 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 exciting or meaningful.  It may be time to dust off that dream.  For others, they may have a deep spiritual yearning for greater connection with the divine.  This may be time to deepen your spiritual practices.  Find friends that you trust or a good counselor or spiritual advisor and give yourself permission to get healthier on many levels–not simply at the physical level.

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 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.