Sharing My Perspective as a Cancer Survivor with Cardiac Late Effects – in the June Issue of the “Evidence-Based Oncology” Journal

A few months ago, I received a message on LinkedIn from the Managing Editor of the journal Evidence-Based Oncology.  She explained that she had read my blog and was writing to ask whether I would consider contributing to their upcoming June issue.  The issue would be dedicated to the growing field of Cardio-Oncology, and she was requesting my contribution to provide a patient’s and advocate’s perspective as one who has personally experienced cardiotoxicity secondary to cancer treatment.  (Evidence-Based Oncology is a publication of The American Journal of Managed Care, a peer-reviewed journal dedicated to disseminating clinical information to managed care physicians, clinical decision makers, and other healthcare professionals in its aim to stimulate scientific communication in the continually evolving field of managed care. It serves as a platform for research, news updates, and opinions in the world of oncology that may impact healthcare access as well as coverage decisions.)

I greatly welcomed this wonderful opportunity to contribute to such a well-respected journal, particularly concerning the serious risk of developing late effects due to cancer treatment, a critical area that is at the heart of so many of my advocacy efforts. You can see my article on the American Journal of Managed Care (AMJC) website, and it was also posted today, June 1st, with the newly released June issue of Evidence-Based Oncology. I would be honored if, as a follower and/or reader of my Musings of a Cancer Research Advocate blog, you would take a moment to read my article on the Evidence-Based Oncology website and share it with your friends and colleagues, such as through Facebook, Twitter, or LinkedIn, to help increase awareness among patients themselves, their primary care physicians (so many of whom still know far too little about late effects of cancer treatment), and other healthcare providers concerning the very real risk of developing collateral damage from cancer treatment many years, often decades, following cancer treatment.  I hope that in some small way (or, even better, in a big way) that my and the other articles in this Cardio-Oncology series will truly make a difference in increasing understanding concerning this critical area for cancer patients and in reducing misdiagnoses / late diagnoses of and increased mortality due to these serious conditions.

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?