A Woman’s Right to Choose: Not What You Think

No, this is not a blog posting about pro-life versus abortion rights.  The title above is an intentional double entendre about another very serious topic: the rights of women (and men) with breast cancer to make their own choices about their treatments.

Most of us who have been diagnosed with breast cancer will tell you that friends, loved ones, and acquaintances have made well-meaning statements that we found uncomfortable, upsetting, or sometimes plain infuriating, such as:

“I know how you feel.”  (This one makes me particularly crazy: “No, you don’t, and I’m happy for you that you don’t.”)

“You’re going to be fine.” (My superstitious thoughts: “Please, God, let me be, but don’t say that out loud because that might jinx my chances.”)

“I had a second cousin twice removed who had the same type of cancer.”  (My response: “I’m so sorry!  How is she doing following her treatment?” The answer: “Oh … Um, she had a recurrence, and she passed away several years ago.”)

“My friend lost all her hair days after her first chemo treatment, and she was always so sick for days afterwards.  I would never want to go through chemotherapy.” (My response: “How long ago was she treated?” Her answer: “Oh, probably 25 years ago or so.” [Really?  The point: There are now remarkable antinausea medications available that prevent nausea and vomiting for many cancer patients.  Twenty-five years ago, there were very few medications (called antiemetics) that were used for this purpose, and the one I received during my chemotherapy for Hodgkin’s lymphoma back in the ’80s, called Compazine, was NOT very effective.])

“Oh, you should … try  that new macrobiotic diet … use that new treatment I saw on the Internet …  make sure that your acidic/alkaline balance is correct … try that new supplement…”

My point is this: Of all the quotes above, as offensive as many of them are, there is one word that shouts out at me, since it is often the most hurtful, confusing, and potentially dangerous one that a newly diagnosed breast cancer patient may hear.  The word is “should.”  I was fortunate in that my husband, parents, sister, close friends, and work colleagues never questioned the many complex treatment decisions I made following my breast cancer diagnosis.  But I know first-hand that many newly diagnosed breast cancer patients hear this word over and over again.

We all know what the term means, but looking at its formal definition is helpful in explaining why I and many fellow cancer patients despise it so (as do many patients with other serious conditions): “Should” is “used to indicate obligation, duty, or correctness, typically when criticizing someone’s actions.”

Should

Imagine how it feels when a newly diagnosed breast cancer patient hears any of the following from a loved one or a friend:

“You really should have started getting regular mammograms sooner than you did.”

“I don’t understand why you’re just having a unilateral mastectomy.  You should go with the bilateral procedure.  After all, aren’t you afraid that you might get it in the other breast and have to go through this all over again?”

“Why aren’t you having reconstruction? You should do so now, since you’ll probably regret it later if you don’t.”

“You really should change your diet and exercise more.  Your cancer is surely a symptom that your body is out of balance.”

church-lady

What do all of these statements have in common? First, of course, they are all vomit-inducing.  But they all are also showing disapproval of the breast cancer patient’s priorities, needs, life choices, and the decisions she (or he) has made on these very complex issues.  They not just imply but boldly, insensitively state that the patient is misguided, has made a mistaken choice, and really should listen to the guidance of others rather than her or his own mind and heart.

As I noted above, I was surrounded by love and support, and I was never questioned about my treatment choices.  When talking through my various options with my husband, and I directly asked him for his opinion about which surgical approach we should take, his response was, “This is 100% your decision.  Whatever you and your doctors together think is the right choice IS the right choice.”  But when I became a peer mentor for newly diagnosed patients shortly after I’d completed my active treatment, I was horrified to discover that many women were strongly questioned about their treatment choices by their loved ones.  I remember one young woman in particular.  She was diagnosed in her early 30s with stage 3 HER2+ breast cancer.  She was painfully shy, was absolutely terrified about her diagnosis, and had an extremely difficult relationship with her family.  She explained that her parents and her sisters were pushing her to change her treatment plans and were not at all supportive of her decisions.  She was so upset by this that she said she was considering “taking the easy way out” and simply following their wishes.   But thankfully, after speaking again with her doctors and connecting with several fellow breast cancer survivors through our regional cancer support organization, she was able to step back and realize that this was completely her own decision and one that must not be swayed by others’ wishes, concerns, possible biases, and potential lack of information.   She had made her decision in concert with her physicians, and based on the evidence, her treatment choices were what was best for her.

Those who love us the most may have very strong opinions about what they feel is best for us.  But it’s possible that they do not have all of the necessary information to make a truly informed decision.  Or they may have misinformation or misunderstanding of the facts.  And even if they are extremely knowledgeable of the different types of breast cancer and understand the current treatment guidelines, the fact remains that it is the patients themselves and their medical teams who must make these extremely difficult decisions based on what is best for the patients.

This is why I wish that the word “should” would remain unspoken by loved ones and friends of breast cancer patients.  And now I’m going to break my own rule this one time by ending with a quote with the “S-word,” but that beautifully captures the intent of this blog.

“Whatever words we utter should be chosen with care for people will hear them and be influenced by them for good or ill.”

~Hindu Prince Gautama Siddharta, the founder of Buddhism

Lonely hearts

Has anyone ever used the word “should” with you, questioning your decisions concerning treatment of your cancer or other serious medical condition? If so, how did you handle the situation?

 

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5 thoughts on “A Woman’s Right to Choose: Not What You Think

  1. Pingback: Weekly Round Up: Stomp Out Breast Cancer Edition | Journeying Beyond Breast Cancer

  2. While I do agree with you that people “should” respect the decisions of others about their health, it is hard to remain quiet when someone truly believes that a coffee enema will cleanse their liver. Then it becomes a moral dilemma. Do I let them possibly hurt themselves with this practice or do I let them continue in their ignorance and hope that the result is only the loss of good coffee? I might suggest they ask their doctor about what they are doing. If they don’t agree they can do what I do in a “should” situation–shake my head that I understand what they are saying while thinking, “No, I don’t think I will do that.”

    • Hi, Lisa: thanks so much for your comment! I wholeheartedly agree with you that we cannot stand by when someone appears to be making treatment decisions based on false or misleading information. It’s crucial for patients to make their treatment decisions in partnership with their doctors as part of their own healthcare team, based on robust evidence. And if patients aren’t comfortable with the medical advice they’ve received, then it’s important to obtain a second opinion or maybe a third to make an educated decision based on facts. Perhaps this isn’t the most powerful example, but I remember participating in a breast cancer patient support group shortly after completing my chemotherapy, and several of the women began talking about various supplements that friends had recommended to them. Surprisingly, the moderator wasn’t saying anything in response, so I jumped in and talked about how important it was to talk with their doctors before taking ANY supplements. I explained how research has suggested that some herbal remedies and supplements may have biological activities that actually interfere with the metabolism of certain chemotherapy drugs, diminishing their efficacy or exacerbating adverse effects and causing increased toxicity. None of them had heard this, and fortunately all immediately agreed on the importance of speaking with their physicians before taking any supplements during their chemotherapy treatment. My worry is about the folks such as their friends who are simply trying to help and be supportive yet are giving “advice” that may be ill-informed, misguided, or in some cases downright dangerous should the cancer patients follow such “recommendations” without immediately speaking with their physicians and oncology nurses.

  3. I’ve been thinking along these same lines–but it seems the phrase getting at me is “you need to….” Like, no I do not “need” to do anything. Funny how when folks think they are offering advice, that one little word “should” makes it so unhelpful!

    • Yes, “you need to” also drives me crazy. Perhaps this is telling, but many years ago shortly after I’d graduated from college, I used to write customer service training materials–and Rule #1 of proper customer service was NEVER telling any customer that they “have” to do anything. 🙂 When speaking to someone with cancer, most folks are well-meaning when they use the “S-word” or the “need” word. I understand that they’re often doing their very best to help and trying to figure out just what to say due to their concern for us and, in some cases, maybe the awkwardness they’re feeling. But my hope is that perhaps blogs like ours can help folks to better understand the need to step back, measure their words more carefully, and try to better put themselves in our shoes. As simplistic as it may sound to some, words really DO matter.

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