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?

 

A Devastating Anniversary – Two Years After Newtown’s Tragedy

Two years ago today, it was an ordinary morning in Newtown, Connecticut.  As I was driving down Main Street, headed to work, I admired the grand old homes, decorated for the holidays, and the Stars and Stripes rippling from the town’s flagpole in the cold air.  At that very moment, 5 minutes away, a disturbed 20 year old was systematically taking the lives of 26 beautiful souls,  forever dividing time for so many of us.

I fell in love with Newtown the first time my husband-to-be drove me down the most beautiful Main Street I’d ever seen, where a massive flagpole, first erected in 1876, proudly stands directly in the middle of the street as an ongoing tribute to the 43 Newtownians who were determined to show the town’s patriotism to celebrate the United States’ 100th anniversary.

During that first December drive down Main Street, Newtown was the home of Lexington Gardens, the folksy “Newtown Bee,” Pasta Fresca—the best Italian restaurant that ever was—and such friendliness and warmth that many residents proudly displayed “Nicer in Newtown” bumper stickers on their cars.

It’s no longer nicer in Newtown–and now we’re also infamous.

As an advocate, I’ve been traveling quite a bit over the last several years, and whenever someone asked me where I was from—even if they were also from Connecticut—their response to my answer was always, “Newtown?  Never heard of it; now where is that?” And I can’t tell you how many pieces of mail we’ve received that were addressed to “Newton.”  Now, everyone knows Newtown.  And everyone knows Sandy Hook, a village that is an intimate part of our town.

On December 14, 2012, shortly after I arrived at work, I heard a commotion in the office next to mine.  When I opened my office door and stepped into the hallway, our entire Billing staff was talking at once, with expressions of horror in their faces.  “Deb, there’s been a shooting in Newtown at one of the schools.”

With that one sentence, our lives changed instantly.  I raced to the phone to call my husband, Marty: our friends across the street from us have 2 sons in Newtown schools, and their mom works in one of the schools as well.  Thank the Lord, their dad had already called Marty to let us know that they were all okay.

The rest of the day was a blur.  We all had our eyes glued to our computers, following the news and worrying about the people we know and love in Newtown.  At one point, one of our doctors, who also lives in Newtown, was interviewed from the Sandy Hook Firehouse, where he was preparing to triage anyone who had been harmed in nearby Sandy Hook Elementary School.  All of our MDs who weren’t working at the practice that day were called into Danbury Hospital to assist the wounded.  They later said that the most devastating moment was when they realized that no more survivors were coming: just 3 people, 2 children and one adult, were brought to the Hospital, and the adult, an employee of Sandy Hook Elementary, was the only one to survive her injuries.

When I drove home that evening, just the thought of driving down my beautiful Main Street made me feel ill, anxious, nauseated.  And I was right: it was absolutely devastating.  There were police cars, news vans, and cameras everywhere, and Newtown looked like it had turned into a war zone—and it had.

Over night, memorials began to appear in town almost everywhere you looked.  Two minutes from our home, someone had posted a makeshift sign on a telephone pole that simply said “Pray.”   Another minute away, people had begun to bring roses, teddy bears, toys, bows, notes, candles, and prayers to a memorial right next to our police station, a memorial that grew larger and larger with every day that passed.  Surrounding towns also began to place signs with messages for the people of Newtown: “We are praying for you, Newtown,” “We Choose Love,” and “We are Newtown.”  And we in Newtown and Sandy Hook mourned deeply for all of those who lost their beloved family members and for the loss of what our town had been.

Newtown, 2012, Pray

 

Newtown 2012, 2

In the days following the tragedy, Newtownians made small acts of kindness the rule rather than the exception.   When stopping at a 4-way intersection close to my home, all 4 of us waved one another on, wanting to be generous to the other folks, until one driver reluctantly went through the intersection.  When walking in my daze through Newtown’s Library, I brought a greatly overdue book to the counter, and the librarian said, “We’re not charging Newtownians any overdue fees for now.”  Yes, small acts of kindness: but these went far to thaw the freeze on our hearts.

Most of us who live in Newtown who were fortunate enough not to lose a loved one know families who were directly impacted.  And we very much grieved together as a town—and still do, 2 years later.  Many of us felt as if we were living in a fog, where nothing seemed real—and had one or more moments when the fog broke and we completely broke down from the weight of the sorrow.  My moment came when I was driving to work one day about a week after the tragedy.  I’d avoided driving through the center of Newtown as much as possible, because at first, it broke my heart and later it angered me that the news vans, the cameras, and the reporters were still there and increasing in number daily.  But I had a present that I needed to mail to my sister for Hanukkah, so I had to stop by the post office across town.  As I was driving down Main Street toward the flagpole in the center of Newtown, I heard a commotion behind me and realized it was a motorcade.  As I pulled over, several police officers drove past on motorcycles … and then I saw the hearse.  And that’s when I completely, totally, irrevocably “lost it.”  There is only one other time when I’d sobbed like this: that day was on 9/11, when we saw the second plane crash into the World Trade Center, when the first and then the second tower came down, when we saw people at the windows of the towers gasping for air and preparing to escape the fire by jumping to their deaths.  As I was trying to wipe my tears away and pulled back into the road behind the hearse and the motorcade, I heard another sound and realized that it was me, wailing.   As I followed the hearse, I saw that it was pulling into the driveway of the church directly across from the flagpole.  I noticed that there was a large, beautiful picture on the church’s lawn—and saw that it was a picture of Benjamin Wheeler, one of the little boys who had been killed.  He was 6 years old, 6 years old.

I saw all the mourners stepping out of the church onto the lawn, and I just couldn’t take it.  I somehow managed to keep driving … only to pass another church, where another funeral was taking place for another beautiful life that had been taken by the shooter.  The lawn of this church was absolutely crawling with reporters, camera crews, and news vans from CNN, Fox News, ABC, CBS, MSNBC, and on and on and on.  They were all planted directly in front of a sign that the church had posted, saying “No media past here.”   I finally managed to pull into the post office’s driveway.  I shut off the engine.  I called my husband, absolutely distraught.  I could barely get the words out, but that didn’t matter.  He spoke with me for about 20 minutes, calmly, soothingly, sharing our grief.  I thought I’d finally gotten myself together, so said good-bye to my husband, grabbed the package, and walked into the post office.  I have no recollection of writing out the mailing label for my sister’s present.  And when I walked to the counter and put the package on the scale, from the way the gentleman behind the counter looked at me, I realized then that I was still crying, but silently now, and the tears just kept rolling down my face.  He then gently put his hand on mine, patted it a few times, and simply said, “I know.  I know.”  But that’s the thing:  I just don’t know.  I don’t know how the families who lost their loved ones this way are going on.  My heart broke for them, as did everyone’s here in Newtown, neighboring towns, everywhere.

Newtown 2012, 3

The first time I traveled following the shooting was in February or March 2013.  I was meeting several advocates who were members of a panel on which I was also serving.   As we got to know one another, we exchanged business cards, but I found that I did so reluctantly–because I knew what was going to happen.  Two of the women with whom I’d exchanged cards were sitting directly across from me on the other side of a large table.  It took about a minute.  They then, simultaneously, looked up, held my card out to the other, pointed to the name of my town, and mouthed, “Oh my God: she’s from Newtown!”  Later in the meeting, they both came up to me separately, saying how sorry they were and asking how all of us in Newtown were coping with the horror that happened in our sweet town.  And this is what I told them:

There is absolutely no way to put the experience, this tragedy into words.  It is simply unspeakable.  But with the horror had also come such kindness, giving, and love.  As I mentioned before, following the tragedy, I saw countless random acts of kindness here in Newtown.  For many months, there were green and white ribbons on almost every telephone pole in town (representing Sandy Hook Elementary School’s colors), and beautiful little painted stars also appeared on the poles with words like “courage,” “love,” and “friendship” to honor those we lost.  Comfort dogs were brought to town right after the tragedy occurred, and they continued to visit Newtown’s schools for months.  Several charities have been established to help the families who lost loved ones; to establish scholarships for children who want to become teachers, celebrating the lives of the brave women who were lost that day; and to help some of the first responders who haven’t been the same since they saw the unseeable.

One of these charities is called Ben’s Lighthouse, which “was created in honor of Ben Wheeler and his Sandy Hook classmates to promote the long-term health of the children and families in the region while nurturing an environment of non-violence and caring.”  As Christopher Murray, psychotherapist and friend of the Wheelers wrote in an article entitled “The last time I saw Ben Wheeler,” “Benny loved lighthouses… Since he’s been gone, lighthouses have become a symbol and a metaphor for him and his martyrdom. His spirit and his memory shine a strong and penetrating beam of light through clear nights and stormy ones to confer upon us awareness, and to bring us safely home.”

Please join me in praying for the families of all those so brutally lost to this unthinkable tragedy:

– Charlotte Bacon, 2/22/06, female
– Daniel Barden, 9/25/05, male
– Rachel Davino, 7/17/83, female.
– Olivia Engel, 7/18/06, female
– Josephine Gay, 12/11/05, female
– Ana M. Marquez-Greene, 04/04/06, female
– Dylan Hockley, 3/8/06, male
– Dawn Hochsprung, 06/28/65, female
– Madeleine F. Hsu, 7/10/06, female
– Catherine V. Hubbard, 6/08/06, female
– Chase Kowalski, 10/31/05, male
– Jesse Lewis, 6/30/06, male
– James Mattioli , 3/22/06, male
– Grace McDonnell, 12/04/05, female
– Anne Marie Murphy, 07/25/60, female
– Emilie Parker, 5/12/06, female
– Jack Pinto, 5/06/06, male
– Noah Pozner, 11/20/06, male
– Caroline Previdi, 9/07/06, female
– Jessica Rekos, 5/10/06, female
– Avielle Richman, 10/17/06, female
– Lauren Rousseau, 6/1982, female
– Mary Sherlach, 2/11/56, female
– Victoria Soto, 11/04/85, female
– Benjamin Wheeler, 9/12/06, male
– Allison N. Wyatt, 7/03/06, female

Newtown, December 2012

On NOT Looking to Melissa Etheridge, Sheryl Crow, and the AARP for Life’s Guidance

I wasn’t going to write about this until I calmed down a bit and had a more rationale, less irate perspective.  But it’s been a few weeks now, I’m still angry … and I found an absolutely perfect quote from masterful songwriter and poet Bob Dylan that I couldn’t let go to waste.  So here it goes …

“It’s not a good idea and it’s bad luck to look for life’s guidance to popular entertainers.”

~Bob Dylan                                                                                                                                               

Bob Dylan

I truly wish the AARP (American Association of Retired Persons) had listened to this very sage advice.  When I came across the recent article in AARP The Magazine that began with the title, “Sheryl Crow and Melissa Etheridge Beat Cancer and Heartbreak,” the warning bells went off immediately in my head.  And then I read the next line: “The music legends teach us a thing or two about living with joy.”  My vision went red.

In just 2 lines, before the article even began, AARP’s magazine managed to perpetuate dangerous myths and to condescend to every one of their readers: women, men, those who have had or are currently receiving treatment for breast cancer, those who have lost loved ones to this terrible group of cancers, and those who will be impacted by breast cancer in the future.

Let’s start with the statement “beat cancer.”  It’s wonderful that both of the singers are doing so well and that their treatment has been effective for them to this point.  But tragically, approximately 25% of women with breast cancer have a recurrence, where the cancer has returned—and for women with estrogen-receptor positive (ER+) breast cancer, nearly 33 percent experience a recurrence.  Furthermore, over half of recurrences for ER+ breast cancer are detected more than 5 years following their original treatment, including after decades, as opposed to other breast cancer types that tend to recur within 5 years of the original diagnosis.  Research suggests that late relapse is most likely due to “tumor dormancy,” where there is a prolonged phase between cancer treatment and detected evidence of disease progression.  It’s thought that cancer cells that were able to escape the patient’s initial treatment are able to survive by hiding in a latent state for years or decades, ultimately coming out of dormancy and leading to incurable breast cancer metastases.

So the important truth here is that we currently have no way of knowing who has “beat” breast cancer.  As Dr. Susan Love has explained, “Breast cancer can be cured.  In fact, we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can’t tell that woman that she is cured—until she dies at 95 of something else.  So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time.”

Crow was reportedly diagnosed with stage I ER+ breast cancer.  Although Etheridge has disclosed that her cancer was stage II and that she has a mutated BRCA2 gene, I was not able to locate her type of breast cancer.  Though I sincerely hope that neither ever develops a recurrence, we simply cannot know whether either woman is “cured” of her breast cancer.

And this brings me to the second line and the accompanying image, partially titled “Lessons for All of Us.”  Seriously? From two people who happen to have the stage because they’re famous singers?  As you’ll see below  (and I apologize, since I suspect many of you are just as weary of seeing this as I am), the image is accompanied by “words of wisdom” from both of the singers.  I have to say that Crow’s comments were comme ci, comme ça.  I do wish that she’d used the passive rather than the active voice when discussing screening mammograms.  In other words, rather than saying “I recommend …” it would have been much more appropriate to say something along the lines of this: “It’s recommended that women at average risk for breast cancer receive regular screening mammograms beginning at either 40 or 50 years of age based on their health team’s guidance and their personal preference.  And women at high risk may be advised to begin receiving regular mammograms at age 40 years or younger.”  I recognize that this is not nearly as “pithy” as what Crow did say–and as a writer, I’m typically not a fan of the passive voice, but this is one of those examples where it’s truly appropriate.  This may have been an opportunity to emphasize what the evidence has found and to contribute to the ongoing conversation by noting the current disagreement in screening mammography recommendations between the U.S. Preventative Services Task Force and the American Cancer Society–IMHO, an opportunity that was lost.  But for the most part, Crow’s comments were relatively thoughtful, whereas those of her friend, Etheridge, were, quite frankly, appalling, condescending, and downright dangerous.

Let’s start with the very first quote in the image from Etheridge: “Take Charge: This was of my own doing, and I take responsibility. When I got my body back into balance, the cancer disappeared.”  But here’s the thing: Breast cancer is nobody’s fault.  And her cancer didn’t “disappear” because she made healthy changes for her body:  rather, there is no longer any evidence of disease because she received treatment for her cancer.

its_all_my_fault3

And you don’t have to look far to find similar statements she’s made in the past.  In an interview with More Magazine, entitled “Melissa Etheridge’s battle with breast cancer,” (why always with the war metaphor?), she was asked what she is doing differently now in terms of her emotional and physical health.  Her response: “I have a very strong belief that this cure that we’re looking for is inside us.  The cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better.”

Okay, let me see whether I’ve gotten this straight.  Cancer as “just a symptom”? because we’ve allowed our bodies to become “out of balance”?  Has Etheridge ever heard of “blaming the victim?”  I repeat: breast cancer is nobody’s fault.  The main risk factor for developing breast cancer is this: simply being a woman.  And the fact is that our risk for breast cancer increases as we become older.  I’ve known several wonderful women now who were remarkably fit, were extremely careful of what they ate, who ran or swam or went to the gym regularly, who developed breast cancer– stage I, II, and III and some who later developed stage IV disease–though their bodies “were in balance.”  Was “understanding health” the “cure” for their metastatic breast cancer?  I think not.

Sheryl Crow and Melissa Etheridge

From “AARP The Magazine”

And here’s another “quotable quote” from Etheridge:  “To Test or Not to Test:  I have the BRCA2 gene but don’t encourage women to get tested.  Genes can be turned on and off.  I turned my gene on with my very poor diet.”  Did she really just say that?  This statement is misleading, offensive, and completely irresponsible.  Unfortunately, the sad truth is that some folks listen to celebrities and take what they say seriously—no matter how inaccurate or ignorant.  This means that Etheridge has a responsibility when she’s speaking to the public.  She has every right to tell her story and to express her opinions—but while making it clear that they are just that, her opinions.  She is not a doctor, yet what she has done is akin to giving “medical advice” that is woefully inaccurate.  She has no right to discourage women from getting testing: the decision of whether to test or not is a very personal and complicated decision that must be based on the evidence, their medical team’s and a genetic counselor’s guidance, and their specific situation.  Etheridge also shows a complete lack of understanding concerning the role that BRCA2 gene mutations play in breast cancer.  The BRCA2 gene mutation does not get “turned on or off” due to choice of diet.  Rather, we have 2 copies of the BRCA2 gene and the BRCA1 gene, which belong to a class known as “tumor suppressor genes.”  The genes encode instructions for making proteins that are involved in repairing damaged DNA.  It’s believed that the mutated BRCA1 or BRCA2 genes’ mutated or missing BRCA protein is not able to help repair damaged DNA or mutations in other genes, causing accumulation of such defects, in turn enabling cells to divide and grow uncontrollably, forming a tumor.  Hundreds of BRCA1 and BRCA2 mutations have been identified, with many associated with an increased risk of breast cancer.  Those who are born with such mutations of the BRCA1 or BRCA2 gene have an increased risk of breast, ovarian, and other cancers due to lack of a working copy of one of the genes.   So Etheridge’s extremely misleading statement is dangerous for several reasons, since it may:

  • Cause those at high risk to blame themselves for developing cancer that was due to a genetic predisposition.
  • Mislead them about an ability to prevent cancer solely with changes in diet.
  • Prevent some from pursuing genetic testing, which in turn may have resulted in their receiving medical interventions that have been found to expand the lives of those with BRCA mutations.
From "AARP The Magazine"

From “AARP The Magazine”

I forced myself to finish reading the entire article, but the last line was another kick in the teeth–a yeah-rah-rah moment: “Cancer, [Crow and Etheridge] agree, has become something they never imagined. ‘A gift,’ they say, almost in unison.”  Perhaps they should have posed in cheerleading outfits with pom-poms rather than those leather jackets?

dancing-cheerleader_zJxctuBO

I do need to pull back on the sarcasm for a moment.  To her credit, Crow has lent her name to the Pink Lotus Imaging Center.  On their website, the Pink Lotus Imaging Center is described as “a comprehensive and integrative breast center exclusively dedicated to the prevention, screening, diagnosis, and treatment of breast cancer.  Headquartered in Los Angeles and founded in 2007, our first location in Beverly Hills was unveiled in 2009.  Since then, we have become a respected leader and innovator in the field of comprehensive breast care.”  And their mission statement is very impressive, warm, and reassuring:

“Our organization was founded with a strong dedication to one clear purpose: To provide the best breast care medically and technologically possible while providing our patients with an environment where they can feel at home; where prevention and wellness matters as much as life-saving treatment; where patients are treated like human beings, not numbers; where integrative medicine is not just a marketing slogan but rather the essence of what we practice; and where women are provided with security and confidence when they need it most. We pride ourselves on the simple fact that our organization’s DNA  was custom-tailored with one person in mind – you!”

But with that said, it’s crucial that both Etheridge and Crow understand and respect the responsibility they have to present their opinions as opinions, not facts or advice.  AARP The Magazine notes that “The two women now say that battling the disease and coming out on the other side deeply transformed them, shaping them into who they are today: survivors, role models, and advocates for social awareness and change.”  Let’s hope that in the future, they’ll both be responsible advocates who can genuinely and helpfully contribute to the conversation.  Otherwise, perhaps Etheridge in particular should stick to the singing.  And until AARP better understands its responsibility to its members and readers as well, perhaps it’s time for those of us who are 50 years of age and older to consider looking for another organization who shows more respect to its members and to the facts.

Update:

A “Non-Apology” Apology from Melissa Etheridge and AARP: Did We Expect Any Less?

Concerning the recent, highly deserved backlash unleashed in response to  AARP The Magazine’s  article with Melisa Etheridge and Sheryl Crow, some of my fellow advocates have eloquently raised a critical point.  They’ve stressed the importance of understanding and remembering the many ways in which those of us who have received this terrible diagnosis form beliefs and make choices to regain a semblance of control.   As an advocate, my first role was serving as a peer mentor for newly diagnosed women with breast cancer.  Like Melissa Etheridge, some focused much of their attention on diet and exercise to try to retain or regain some control after feeling that their world had rocked off its axis.  In many ways, I took steps to try to protect myself as well after my own diagnosis: eventually, my road toward getting back a sense of control took the form of becoming actively engaged as a breast cancer research advocate.  Of course, everyone’s road is different, and everyone’s choice is just that, a choice.

Melissa Etheridge undoubtedly shared many of the same fears that so many of us do—and I understand that some folks tend to forget that in the aura of her celebrity.  Yet with that said, as I discussed in this blog post, I feel very strongly that with her celebrity comes Responsibility, with a capital “R.”  As of today, she has 64.8 thousand followers on Twitter and  462,204 likes on Facebook—and the AARP’s Facebook page has well over 1 million likes.  So when Etheridge shares what is framed as advice, for better or worse, she has an audience of millions.   As a woman who has had a terribly frightening diagnosis, she is absolutely entitled to believe whatever she needs to to get through.  But she also needs to understand that when she speaks, so many (in my humble opinion, far too many) people listen—so I sincerely hoped that she would learn from this and would be careful to frame her opinions as her own, rather than as Gospel.

Etheridge on Twitter

I also do feel that the AARP and “AARP The Magazine” holds the lion’s share of the responsibility here.  Their editorial team made a grave error when determining how to frame this article, dangerously misleading their millions of members and the general public.  Unfortunately and upsettingly, they still haven’t recognized this.  Since this backlash began, the only statement I see that has been issued by AARP is the following, as quoted in “USA Today”:

“Robert Love, editor in chief of ‘AARP Magazine,’ said in a statement that his magazine didn’t ‘take a position or prescribe medical recommendations for breast cancer testing or treatment’ and “did not intend for the views expressed in the article to be interpreted as medical advice.”  Interesting comment, since the image included with the article was entitled “How They Beat Cancer … LESSONS for All of Us.”  In addition, AARP The Magazine’s Facebook page still has a picture of Melissa Etheridge and Sheryl Crow as their cover photo, and the FB Profile Picture also shows the two singers from the magazine’s cover.

And when Etheridge was asked about the backlash in this same “USA Today” article, her response was that “she’s been misunderstood’ and that “I was sad there was such a negative response to what I said.”  She also stated that “I knew all along there would be people who disagreed.  I never wanted that to stop me from saying anything.  I can’t control the way people understand something.”

Misunderstood

 

In another article, published in “Dame Magazine,” where she was again questioned about the backlash, Etheridge responded with the following: “People think it’s dangerous for me to say, ‘Hey, maybe there’s more than just this one way of looking at cancer,’ and they think that’s dangerous because they believe in science, and I understand that totally, and 11 years ago, I was with them. I understood that. In my discoveries, I think that maybe if someone is confronted with this, that maybe this other thought might be helpful for them. For some people, but not all always [Laughs.].”

She was also asked about why she engaged in a Twitter war of words with blogger, “Boing Boing” editor, and breast cancer survivor Xeni Jardin, whose recent blog has this wonderful title, “AARP runs vomit-inducing, quackery-filled breast cancer piece with Sheryl Crow, Melissa Etheridge.”  Etheridge noted, “The reason I did that was it seemed like, all of a sudden, in that one day, I got just a barrage of really awful, awful stuff. Like people standing up on a wall going, ‘Na-na-na-na-na-na. You’re awful,’ and I was like, what? Why do they want to pick a fight with me? I don’t understand, and so I was reading everybody, and some  just want to be mean. Some people do, yet Xeni is a cancer survivor herself. I have always wanted to present myself as, ‘This is just my experience,’ and I felt I was being misunderstood, and I love real conversation, not just okay, I answered this person’s questions. This company put it in a magazine, and then they’re making their comments on it, but no, talk to me. What’s your question? What don’t you understand? This is how I feel, and you’re going to believe what you believe. Just why put so much bitterness and ugliness out toward me? I don’t understand that. Help me understand that, and we can have a conversation about it.”

Twitter wars

Heavy sigh.  So once again, it’s not about the evidence but about poor misunderstood Melissa Etheridge.  Yes, for those of us who are so concerned about the damage done by this article, who still and will always “believe in science,” our true goal here was simply to “pick a fight” with Etheridge, and yes, we really do “ just want to be mean.”  As Etheridge said, “What?!”  Really, is there no limit to this woman’s solipsism and narcissism?  This may be extremely surprising to Etheridge, but no, not everything is about her.  The point, again, is that she’s used her all-too-large platform to spread falsehoods wrapped in the guise of “advice” by AARP in their “special health issue,” to millions who take the words of celebrities seriously.  This is about those millions.

So when all is said and done, no apology.  Not a word about the facts.  Not from AARP.  Not from Etheridge.  Not from “AARP The Magazine.”  All we’re left with are Etheridge’s and AARP’s “Non-Apology Apologies.”   In Etheridge’s case, I wish her well, but the only “lesson” that she’s taught “all of us” is that clearly, from her perspective, this backlash wasn’t due to her and the AARP’s irresponsibility.  Nope, to her obvious regret, the problem is that she cannot control how we think, nor how we understand what she has to say.   So I’m going to ask again, ever so politely: Melissa, please, please  stick to the singing.

In Dedication to Donna

“Friends are the angels that lift us up when our wings have forgotten to fly.” 

                                                                                                                     ~Author unknown

What can you write about a beautiful person inside and out who has lost her life far too young …

Who loved her young son more than heaven and earth …

Who was a fiercely intelligent, driven, passionate advocate for others until the very end…

Who touched the lives of everyone she met, who was intellectually curious about everything around her, who was always the one who brought strength and laughter no matter how difficult the situation, and who brought so much joy to her family and her so many friends?

Donna Chaffe, my friend, sister, and fellow breast cancer advocate, passed away this Monday, October 13th at the young age of 48.  And the day she died was this year’s “Metastatic Breast Cancer Awareness Day,” the one day in the pink haze of October that is dedicated to debunking the “feel-good” myths and increasing understanding of the very dark realities for those with breast cancer.

As Dr. Susan Love explained in her October 13, 2011 blog piece, Metastatic Breast Cancer: Telling the Whole Story, “I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know [who] represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!”

Donna, who knew the other side of breast cancer far too well, was a passionate advocate focused on the need for meaningful, innovative, and impactful research for the prevention and cure of metastatic breast cancer.  And the day that Donna and I met for the first time, we were both new advocates who were attending the National Breast Cancer Coalition (NBCC)’s Project LEAD®, which is a premier advanced, and intense scientific training course on breast cancer.  We were both excited about becoming active educated breast cancer research advocates in order to gain a seat at the table with senior advocates, scientists, clinicians, and other stakeholders where research decisions are being made.

I’ve written about this before, but it bears repeating.  When I first walked into that room in Denver as Project LEAD was beginning, I was a painfully shy, relatively young woman who had never traveled on her own before, who was enervated by any new social situation, who was extremely uncomfortable being in a room full of strangers.  But just a few days later, at the end of Project LEAD, I left that same room having made lifetime friendships with several of the women who were my fellow LEAD Graduates—and I’m blessed that Donna was one of my new sisters.

Most who knew Donna would probably agree that she was anything but shy.  She was full of energy, so friendly, outgoing, passionate–and absolutely hilarious.  She had a million-dollar smile that lit up a room, and I have no doubt that I laughed more with Donna during those few days in Denver than I had in the entire year before.

After Project LEAD, Donna was interested in becoming a peer reviewer for the Department of Defense (DoD)’s Breast Cancer Research Program—and she would have done so if her need for more treatment had not prevented that.  Breast cancer is a cruel enemy, and each time Donna was right on the cusp of becoming a reviewer for the next peer review cycle, it seemed that it resisted, taking a new turn that required additional treatment and caused difficult side effects.  But Donna never seemed to become discouraged and continued advocating in so many ways.  One of the many things I’ll never forget about Donna is how she immediately jumped in to advocate for my first cousin, Laura, when she was diagnosed with metastatic breast cancer.  As I wrote in an earlier blog post, the upsetting irony was that I received the news about my cousin while sitting in a session on the advances in breast cancer treatment in the last 50 years.  Surrounded by hundreds of others during this session of the American Society of Clinical Oncology (ASCO)’s Annual Meeting, as tears were rolling down my face, I immediately sent messages to dear friends and advocates with metastatic breast cancer themselves, asking if they could provide my cousin with support.  This of course included Donna.  In my note to her, I told her that I had a huge favor to ask:  I explained that my cousin was “blind-sided and isn’t yet able to talk on the phone, but when I asked if she would be interested in corresponding with some wonderful advocates and dear friends of mine who are living with metastatic HER2+ breast cancer, she immediately said yes.  I know that it’s been a very tough time recently, so if you’re just not up for this, I completely 100% understand.  But if you are able to, I would forever be grateful because I can’t imagine anything that could be more helpful to my wonderful cousin than corresponding with you, my dear friend and wonderful advocate.  With love and gratitude, Deb.”

And of course, Donna immediately responded:

“I am so sorry, Deb.  Cancer really SUCKS!!!  I will absolutely!!! contact her.  This round with me is so far my scariest.  I know the feeling of being told ‘it’s back’ and I wish no one ever had to hear it.  Luv ya, Deb, hang in there sweetie.”

This took place just months ago in late May.  Even as she was having such a difficult, frightening time herself, she continued to advocate passionately for others—truly amazing, so truly Donna.  Just one look at her Facebook page shows her enduring spirit and strength, such as the quotes that she loved to post–which always inspired all of us who read them.  For example, this August, she posted the following:

Life

And in mid-September, she shared this:

Strength

In late September, though she was feeling very tired and having difficulty with her new medications, she shared with her friends that she had “finally taught ‘The Boy’ to make chili!” and that she was recording recipes “for Erik for someday, including old family secrets. ;)”

And on October 3rd, Donna typed her last posting on Facebook, as always advocating for others:

“Please remember that we are entering PinkTober.  However, nothing ‘pink’ cures cancer, especially pink lightbulbs.  Ensure that if you buy something pink for ‘awareness’ that the proceeds are going to research into or prevention of metastatic cancer!  Breast cancer has to spread to kill.  We’re all becoming ‘aware.’ Now let’s put that awareness to use through research into causes and prevention.  Make chemical companies stand up and tell us why they are still adding carcinogens to our food and environment!  METAvivors unite! Some of us are still waiting for a miracle!!!”

Ever hopeful, ever strong–The fact that such a miracle did not come in time for Donna breaks my heart.

 

Sweet Donna

 

 

Donna and Erik at the One-Eyed Pig

Donna with her beloved son, Erik, at the “One-Eyed Pig BBQ” during a visit with us in Newtown, Connecticut in March 2013

 

Donna

 

In Donna’s obituary, the family asks that in lieu of flowers, memorials may be directed to the Iowa Breast Cancer Action Foundation in Donna’s memory.

Lost – When Night Falls Again and Again

“I can’t eat and I can’t sleep. I’m not doing well in terms of being a functional human, you know?”

~~Ned Vizzini, “It’s Kind of a Funny Story”

  Desolate

“When you’re lost in those woods, it sometimes takes you a while to realize that you are lost. For the longest time, you can convince yourself that you’ve just wandered off the path, that you’ll find your way back to the trailhead any moment now. Then night falls again and again, and you still have no idea where you are, and it’s time to admit that you have bewildered yourself so far off the path that you don’t even know from which direction the sun rises anymore.”

~~Elizabeth Gilbert

~~~~~~~~~~~~~

With new crises seeming to develop on a daily basis across the globe, our news cycle is in overdrive, and critical conversations that had been taking place are quickly overshadowed by more recent developments.  Just last week, the nation was discussing the loss of renowned comedian Robin Williams to the tragedy of clinical depression and suicide.  I would argue that the questions raised by his death represent a conversation that must continue even as we focus on other critical events requiring our attention.  My hope is that the below will play even the smallest part in that–and that it will well be worth sharing this if it assists even one person …

~~~~~~~~~~~~~

Like so many others this past week, I was shaken by the news of Robin Williams’ tragic death.   Thinking of the depths of his despair is simply devastating.  And the misunderstanding, cruelty, and ignorance some showed following this news were and remain bewildering and heartless.  But even in light of such shameful behavior by some, what gives one heart is part of the legacy that Mr. Williams left as he passed—the honest, profound conversations that have been taking place by so many talented writers and bloggers who are openly sharing their own experiences with depression.  With their thoughtful words, they have drowned out the angry and ignorant shouts of the foolish and have begun to bring understanding of just what depression is and why it is so crucial to receive help … because the sad truth is that there are so many misconceptions about depression, and there are so many things that depression is not.

It is not “feeling sad.”

It is not something that can be addressed by simply “trying harder” and “just getting over yourself and cheering up” (“advice” that some folks may give, which actually does much more harm than good).

It is not something others can truly understand if they have been fortunate enough never to have experienced depression themselves.

It is not a condition that can be solved by another’s judgment.  Unfortunately, some may try to help by saying there are “so many others out there who have real problems” and “much more difficult lives,” but “they’re doing fine, and after all, you’re so lucky.”  Lucky?  Is there another word in the English language that has been misused by so many?

What clinical depression IS:

A serious mental illness that can be life-threatening.

You can probably tell that I have some anger about the misunderstandings surrounding depression, and that’s another reason why I feel it’s so important that this public discussion has finally begun to take place.  And yes, this is personally driven as well.  My family and friends will tell you that I used to be an extremely anxious person.  And that would be an understatement.  I was painfully shy, found it difficult to meet new people, dreaded any situation where I had to make “small talk,” and was enervated by any situation where I needed to be “on” for any length of time.  Just one example: Shortly after I’d started a new job, I learned that I had to give a presentation at a conference six months later as a staff member—and I was a mental and physical wreck for all six of those months, absolutely dreading having to give that talk.  If I was worried about something—and I was always worried about something—I’d go over it again and again, assessing and turning round and round every terrible possibility—until I was in full-blown catastrophizing mode.

Having such anxiety in and of itself was beyond awful.  But then in my 30s, I found that there was something even worse.  For quite some time, I’d been feeling not only anxious but “truly down.”  But it was much more than that.  Everything around me had begun to go gray, and I could see no colors in my life.  I had absolutely no interest in food, and my husband found himself begging me to please just eat something.  I went down to 90 pounds, because I just couldn’t do it.  I was completely exhausted and had no energy, and I’d become a terrible sleeper, never getting sufficient rest, because my mind was far too busy with its catastrophizing.  I had a wonderful husband and family who loved me, and I had survived a diagnosis of stage 3 Hodgkin’s lymphoma in my early 20s.  I knew how fortunate I was.  But over time, I had developed such deep anxiety that it led me into the quicksand and hopelessness of depression.

 

Yellow fields

After far too many months, I finally heard the pleas of my husband and family and went to see a doctor, who immediately prescribed an SSRI.  My first instinct was to strongly resist this, but I realized that I had to do something, because the quality of the life I had fought for so hard in my 20s was of no quality at all.  But the effect was not what I’d anticipated or hoped:  the specific medication I’d been prescribed almost immediately caused me to develop frightening adverse effects.  Within a day, everything around me felt unreal, as if I were looking through a glass haze.  When I spoke, it was as if I were talking under water, and I was uncertain on my feet.  And with every day that went by, the haze became worse, and this scared the hell out of me.  But I guess that the “good news” there was that by feeling frightened, I was feeling something, where before there had been nothing but numbness and absence.  When I called my doctor about the side effects, he asked me to stop taking the medication immediately.  Though he wanted me to try a different medication, I was simply too frightened to do so.  Even so, this experience somehow loosened depression’s grip on me.  Maybe it truly was the deeply disturbing side effects and the fear they caused.  Perhaps it somehow reminded me that I did care about my own well-being, and I wanted to feel “like myself” again.  Though it took time, I eventually felt that my eyes were completely open again, I began to see colors emerge from the gray, and I realized that hope and enjoyment had again entered my life.  My anxiety was still a part of me, but its hold on me had lessened and with that the tidal wave of depression had receded.

But depression wasn’t done with me.  If you’ve read my  blog before, you know that I was diagnosed with breast cancer in my early 40s—yet it wasn’t the diagnosis in and of itself that caused depression to re-enter my life.  I had already undergone my bilateral mastectomy and was just a few weeks into chemotherapy when I began to have terrible, painful side effects from medications I received with my chemo regimen.  The pain soon became so horrendous that it was difficult for me to do even the most routine things, and all I could seem to focus on was how miserable I was and how hopeless everything seemed.  I hit rock bottom when I was in my oncologist’s exam room, sobbing as I told him about what I had been experiencing.  I told him that I couldn’t bear it, that I simply couldn’t go on like this.  But what I didn’t say was that for the first time in my life, I finally understood the true meaning of despair.  Though I did not speak these words, my oncologist heard them anyway.  He immediately started me on symptomatic treatment that gradually reduced and, with time, eliminated the terrible side effects, all while continuing my chemotherapy.  And just as importantly, he gently encouraged me to begin treatment with an SSRI (selective serotonin reuptake inhibitor).  But he knew me so well: that I would be extremely resistant to doing so (even though I hadn’t told him about my previous experience).  He understood that I was tired of being on so many medications and that the last thing I wanted was to add another chronic med to my regimen.  When he recommended beginning this medication, I immediately shook my head, but he asked me to hear him out.  He talked about the fact that I would be starting Tamoxifen® shortly after completing chemo and that I could very well develop difficult hot flashes as a side effect. I didn’t immediately understand the connection there, but he explained that getting started on an SSRI could help to prevent or minimize the hot flashes associated with Tamoxifen.  That was an explanation that resonated with me.  But then he added with a grin that the specific medication he was recommending also had the benefit of “taking the edge” off any anxiety I may be experiencing: yes, he saw me so clearly.  An extremely wise man, my oncologist.After a few weeks, I realized that the edge had indeed been taken off of my ever-present anxiety, and the terrible side effects that I’d been experiencing had almost ceased entirely, along with the sense of hopelessness, depression, and despair that had accompanied both.  And as the weeks turned into months, I gradually came to realize that something was truly different—and was actually missing.  Although I was still receiving chemotherapy, though I was exhausted, though I was bald … I was not anxious!  For the first time in my adult life, I was experiencing life without anxiety as my constant companion … and it was and still is indescribably wonderful.

Peach flowers

I am absolutely not one to see medication as the complete answer to everything.  But my anxiety had a physiologic basis that was effectively treated with medication, by slowing and balancing the absorption of the neurotransmitter serotonin in the brain.  (Serotonin is thought to play an important role in regulating mood and anxiety.)  But what of my experience with the other SSRI years before?  All medications may cause side effects, but some SSRIs are more likely to cause specific ones.  Particular SSRIs may tend to be most effective without causing intolerable side effects.  Yet with that said, one SSRI that works well for one patient may not for another.  The SSRI I’d received years ago had a chemical structure unrelated to that of the other SSRIs, and perhaps that’s part of why it affected me so differently from the subsequent medication.  And we know that a person’s genetic makeup impacts his or her response to particular medications, including the agent’s effectiveness as well as the risk of developing particular adverse effects.  In fact, there is a rapidly developing field of study, pharmacogenetics, that focuses on the variations in drug response due to a person’s genetic makeup, which impacts the activity of drug-metabolizing enzymes.  For example, if a person metabolizes particular drugs slowly, they may require lower, less frequent doses to prevent toxicity.  So likely that original SSRI was simply the wrong drug for me, or the wrong dose, or both due to my genetic makeup.  Finding an effective medication with few or no adverse effects may often be a process—one I wasn’t willing or able to do years before.  Yet this time, thanks to the wisdom and gentle encouragement of my oncologist, I was.  By hearing the words I didn’t say, he gave me a gift.  Because the effect of this medication—at such a tiny dose—ultimately gave me myself back, a self without the horrible burden of a constant anxiety, an anxiety that at any time could whirl into the black hole of depression.  (Also of note is that I ultimately had very few hot flashes  after starting the Tamoxifen.)

So my heart breaks when I learn that anyone is affected by the terrible burden of severe depression and anxiety and knows the depths of the abyss that comes with despair.  It is stunning to many of us that Mr. Williams—one who brought such joy and laughter throughout his life—struggled with depression “behind the music.”  The media has reported that he had been affected by depression for many years—and that more recently, he had had open-heart surgery as well as the initial symptoms of Parkinson’s disease (PD), both of which alone are also strongly associated with depression.  Though the reason for this is tragic, the nation is finally having a long overdue conversation concerning clinical depression and anxiety as common, potentially underdiagnosed and undertreated symptoms in patients with Parkinson’s disease.  Just as tremor, rigidity, and slowness of movement are clinical symptoms of PD, for more than half of PD patients, clinical depression and anxiety may be as well.  In fact, research suggests that with PD and other chronic neurologic conditions, such as multiple sclerosis, the disease process itself may cause changes in the brain that lead to depression.  This national discussion is serving to raise awareness of the possibility of PD-related depression and why it is so critical to discuss such symptoms with a physician for appropriate diagnosis and treatment.  Fortunately, recent research has increased our understanding of depression in PD and improved treatment options for patients.

It’s also important to note that any chronic illness may trigger depression, and overall, it’s estimated that up to one-third of people with serious medical conditions have symptoms of depression.  In addition, per the National Cancer Institute (NCI), “Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients…Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.alone 2

Of course, everyone would agree that it’s normal to feel sad and extremely upset after being given a diagnosis of cancer, PD, or any serious and/or chronic condition.  But some folks have greater difficulty in adapting to their diagnosis than others, and the symptoms of depression are different from the frustration, worry, and grief that can be felt after receiving such a diagnosis.  Rather, there are recognizable symptoms of clinical depression that should be diagnosed and treated.  As noted by the NCI in its PDQ® monograph on depression: “A critical part of cancer care is the recognition of the levels of depression present and determination of the appropriate level of intervention, ranging from brief counseling or support groups to medication and/or psychotherapy.” The NCI indicates that clinical or major depression has symptoms that last longer than 2 weeks, which may include the following:

  • Feeling sad most of the time
  • Loss of enjoyment and interest in activities that previously were pleasurable
  • Changes in eating and sleeping habits
  • Nervousness
  • Slowed physical and mental responses
  • Unexplained tiredness
  • Feelings of worthlessness
  • Feeling a sense of guilt for no reason
  • Inability to pay attention
  • Frequent thoughts of death or suicide

If you are experiencing any such symptoms, please make an appointment with your doctor.  Or if a loved one or friend has symptoms, strongly encourage him or her to see a doctor.  And please remember: You, your loved one, none of us is alone.

“… if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it?— Carpe— hear it?— Carpe, carpe diem, seize the day boys, make your lives extraordinary.” 

~ Professor John Keating (Robin Williams), from the movie “Dead Poet’s Society”

May you rest in peace, Mr. Williams.

Heaven

–> Help for Mental Illnesses

–> Online Behavioral Health Treatment Services Locator

–> If You, a Family Member, or a Friend is in Crisis and Needs Immediate Help

 

A Heart-Wrenching Meeting

Last month I was given a wonderful opportunity, receiving a Patient Advocate Scholarship from the Conquer Cancer Foundation to attend this year’s 50th American Society of Clinical Oncology (ASCO) Annual Meeting.  As an independent advocate, I’m usually in the position of needing to cover my own expenses.  The result is that there are far too many important meetings I’d like to attend every year that I simply cannot, so I often have difficult choices to make.  It was for that reason that I hadn’t been able to attend ASCO’s Annual Meeting for a few years—so I was delighted to be on my way to Chicago to attend the sessions in person again, rather than following the news remotely.

ASCO 2014 Annual Meeting

ASCO 2014 Annual Meeting

The ASCO Annual Meeting is always a valuable conference and, for the oncologists who attend, it can be practice-changing.  When I first attended the ASCO Annual Meeting as a new advocate, it left a tremendous impression on me.  The sheer numbers of people streaming through the immense McCormick Conference Center, the different languages I heard all around me, the dozens of sessions occurring simultaneously, the camera crews interviewing oncologists about breaking news, and being right there in the audience, often with thousands of others, hearing long-awaited findings from critical clinical trials—all around, it was an invaluable experience for me as a survivor as well as a committed cancer research advocate.  But by far my most lasting impression resulted from my discussions with several fellow advocates who were also attending ASCO—some for the first time like myself and others who had been present every year for decades.  I had attended several breast-cancer-specific conferences by that time and had made many lasting friendships with breast cancer advocates.  But the ASCO meeting was the first time that I’d met a large number of advocates whose efforts focused on so many different types of cancer—pancreatic, lung, ovarian, and esophageal cancers, lymphomas, leukemias, and others.  And I found that of course, there were important differences in focus depending on the form of cancer: for example, the very real concerns about stigma impacting lung cancer patients, due to an unspoken feeling by some that they have somehow “caused themselves to have cancer by smoking”; the fact that there are smaller numbers of advocates and resources for pancreatic cancer, lung cancer, and other cancer types due to the unfortunate reality of poor survival rates and numbers of patients; and this names just a few.  BUT I was immediately struck by how much we all shared, having similar concerns, challenges, passions, and frustrations—and by how much we all could learn from and teach one another.  Thanks to that first ASCO meeting, I made friendships with many advocates that will last a lifetime, and we have all reached out to one another over the years since for advice, to share resources, to offer advocacy opportunities, to connect newly diagnosed patients with important support, and to collaborate on critical advocacy efforts.

And all that I just described held true for me during this year’s meeting: how gratifying it was to be surrounded by so many who are dedicating their lives to treating, preventing, and curing cancer; to see dear advocate friends again and to meet talented new advocates who are performing such crucial work; and to participate in and witness new collaborations and partnerships being formed between advocates, researchers, clinicians, and all stakeholders in the cancer landscape.

But …

Something happened during this year’s ASCO meeting that was quite literally heart-wrenching.  And it painfully brought into focus my changing perspective as a now older, perhaps more “hardened” advocate.

The moment occurred when I was sitting in the audience with hundreds of other people during a session entitled, “50 Years of Advances in Breast Cancer Treatment: What Have We Learned? Where Are We Going?”  And the fact is that in the last decade alone, we have made critical advances and learned so much about the biology of breast cancer, which in turn ultimately led to crucial new treatment approaches–perhaps most notably, trastuzumab (Herceptin®) for the targeted treatment of HER2+ breast cancers.  But as I listened to the speakers,  I found myself reflecting on how much we still do not know.  Are we just now only learning the right questions to ask?  What about the terrible reality of resistance that often develops to new agents, including targeted therapies–and of tumor dormancy for ER+ breast cancers that, in about one-third of patients, ultimately leads to a diagnosis of metastatic breast cancer often decades after a patient’s original diagnosis?  And what about what many call the incrementalism that impacts cancer research, where the investment of many years and millions of dollars, as well as the involvement of tens of thousands of cancer patients in clinical trials, may lead to a drug approval based on just weeks’ improvement in overall survival or on surrogate endpoints?  Most importantly, what about the fact that we do not yet have a cure for metastatic breast cancer?

Celebrating my 4th birthday with my first cousin (the cutie with the blond hair) and friends

Celebrating my 4th birthday with my first cousin (the cutie with the blond hair) and friends

To break my chain of thought, I glanced down at my cell phone, planning to quickly check my messages and then turn my full attention back to the speakers.  And that is the moment when I saw the message that broke my heart and turned everything around me grey.  My first cousin, my best friend when we were little, the one I worshipped, had just been diagnosed with metastatic HER2+ breast cancer.  As I sat in that conference room, and the speakers continued to talk about the crucial advancements made for breast cancer patients in the last 50 years, and the audience members all around me were taking notes, snapping pictures of the slides, talking about the presentation, or simply listening, I was angrily wiping tears from my face, thinking over and over to myself, “It’s not enough!  It’s nowhere near enough!  My cousin, my friends with mets, everyone with BC mets, they need a cure, and they need it NOW!”

These thoughts stayed with me during the remainder of the meeting, including when I was listening to what was perhaps the most reported session in the media—a session that made everything even greyer.  It was during this session that Dr. Martine Piccart-Gebhard reported the long-awaited results of a large, multicenter phase III study called the ALTTO trial, which randomized over 8,000 women with HER2+ breast cancer following surgery to either concurrent trastuzumab and lapatinib (Tykerb®), trastuzumab followed by lapatinib, or trastuzumab alone for one year.  The patients in the trial received anti-HER2 therapy either after completing all chemotherapy, concurrently with a non-anthracycline, platinum-based regimen, or concurrently with anthracycline followed by a taxane.  (A fourth arm of the trial, where lapatinib alone was compared to trastuzumab, was closed due to futility in 2011.)

Dr. Martine Piccart-Gebhart

Dr. Martine Piccart-Gebhart presenting the first ALTTO Trial Results

When Dr. Piccart-Gebhard presented these first results of the ALTTO trial during this meeting, she announced that the results disproved the hypothesis that dual anti-HER2 therapy with trastuzumab and lapatinib in the adjuvant (postsurgical) setting enhances clinical outcomes in patients with early-stage HER2+ breast cancer.  She reported that at four years, disease-free survival, the primary outcome of the trial, was 86% with trastuzumab alone, compared with 87% with trastuzumab followed by lapatinib (*P=.610, hazard ratio, 0.96) and with 88% with concurrent trastuzumab and lapatinib (P = .048; hazard ratio, 0.84).

Median overall survival rates were 94% with trastuzumab alone and 95% with both combination treatment arms.   Dr. Piccart-Gebhart also reported that lapatinib was associated with significant increases in diarrhea, skin rash, and liver events, stressing that this may explain why just 60% to 78% of patients in the lapatinib-receiving arms of the trial received at least 85% of the protocol’s specified dose.

In other words, the primary endpoint of disease-free survival was not statistically significant—i.e., no better with the combination of these two specific HER2-targeted agents when compared to trastuzumab alone—and furthermore, lapatinib was associated with more side effects. These results were a serious disappointment, and the expert commentary grimly emphasized the significance of the information gained from this trial.

*What is a P value and hazard ratio?

In most studies, a P value of less than .05 is selected to determine statistical significance, meaning that if the data show that the “null hypothesis” has less than a 5% chance of being correct, then it is wrong.  The null hypothesis is the hypothesis that an observed difference is due to chance alone and implies no effect or relationship between phenomena.  A hazard ratio is the measure of how frequently a specific event occurs in one group compared to how often it occurs in another group over time.  In cancer clinical trials, hazard ratios are frequently used to measure survival at a particular point of time in patients who have received a specific treatment compared to a control group who received another treatment or placebo.  A hazard ratio that equals 1 indicates that there is no difference in survival between the treatment and control groups, with a ratio of more or less than 1 meaning that survival was better in one of the groups.  Together, the P value is used to reject the null hypothesis that the hazard ratio equals 1—that is, that the treatment being studied is not beneficial.

Invited discussant Dr. George Sledge, Jr., former president of ASCO and chief of oncology and professor of medicine at Stanford University Medical Center, reminded the audience of the thrilling moment during the 2005 ASCO Annual Meeting, when the first results were announced for adjuvant treatment of early-stage HER2+ breast cancer with trastuzumab, the first anti-HER2 targeted therapy.  He described this as a “defining moment in our field,” where the associated 50% reduction in the annual risk of recurrence still “remains one of the great success stories.”  But “there was still real work to be done,” and he emphasized that such efforts involved evaluating biology-based approaches, explaining that the combination of trastuzumab with kinase inhibition “at the time appeared to be the best bet.”  (Kinases are enzymes that activate proteins by “signal transduction cascades,” when a molecule outside a cell activates a specific receptor either inside the cell or on its surface.  Activation of the receptor then triggers a cascade of events inside the cell, which may alter gene expression, the cell’s metabolism, or its ability to divide, for example.)  Lapatinib is an anti-HER2 agent that inhibits the intracellular tyrosine kinase domains of both the HER2 and HER1 receptors.   Because lapatinib inhibits two cell surface receptors and is a smaller molecule than trastuzumab, the hope was that it may prove to be more effective when combined with trastuzumab through the two agents’ different mechanisms of action, achieving dual HER2 blockade.

Dr. George Sledge Jr., former President of ASCO, Discussant for Plenary Session on the ALTTO Trial Results

Dr. George Sledge Jr., former President of ASCO, Discussant for Plenary Session on the ALTTO Trial Results

This led to the development of the ALTTO trial, comparing use of trastuzumab alone against the combination of trastuzumab and lapatinib and, ultimately, the findings that there was no significant difference when lapatinib was added to treatment.  Dr. Sledge emphasized that the ALTTO trial required a strict P value of .025 or less to demonstrate statistical significance, and he stressed that no one should be misled by the disease-free survival P value of .048, thinking that this was a positive trial.  Rather, he firmly stated that “This is a negative trial.”  He then posed the important question of whether this trial might later turn statistically positive with further follow-up based on additional results.  His response: “Perhaps, but not very positive, given the results we’ve seen today.”

The negative results of the ALTTO trial were surprising due to the positive results of the earlier NeoALTTO trial, a study in which lapatinib and trastuzumab were compared with trastuzumab alone in the presurgical (neoadjuvant) setting.  Treatment with lapatinib, trastuzumab, and paclitaxel (Taxol®) was found to nearly double the pathologic complete response rate (pCR).  (Pathologic complete response, or no invasive or in situ residuals in the breast or lymph nodes, is proposed as a surrogate endpoint of tumor response that should be strongly correlated with more traditional endpoints such as overall survival and disease-free survival.)

These results are not only extremely disappointing based on lack of improvement with this specific combination therapy; rather, they also raise troubling questions on the approach to the development of new drugs for early breast cancer.   As Dr. Sledge noted, these negative findings “tell us at a simple level that we won’t be using lapatinib in the adjuvant setting,” since as discussed above, he predicts that further follow-up of the ALTTO trial results will not lead to a statistically significant positive result.   But he also stressed that these findings have produced several larger, critical questions: “You might be wondering why a negative adjuvant trial occupies a Plenary Session spot, a place usually reserved for practice-changing data.  I suggest that the answer requires us to rethink our approach to the development of new drugs for early breast cancer.  ALTTO represented a reasonable test of the hypothesis that improvements in pathologic complete response rates were associated with improved disease-free survival.  These hopes have now been dashed.”

Said another way, in recent years, many breast cancer researchers, clinicians, and advocates have become increasingly comfortable with the idea of conducting innovative, smaller neoadjuvant clinical trials, using pCR as a surrogate endpoint to predict outcomes  in the adjuvant setting.  Yet the negative results from the ALTTO trial, following the positive results from its sister neoadjuvant trial, NeoALTTO, serve to undermine confidence in the accuracy of predicting and translating treatment effectiveness and outcome from one clinical setting to another.  As Dr. Sledge noted, the ALTTO trial “invites a larger question” of whether agents that are found to be effective in the metastatic or neoadjuvant settings can be considered predictive of similar efficacy as adjuvant treatments.   “Why have these approaches failed in the adjuvant setting, despite a plethora of preclinical evidence and numerous positive trials in the metastatic setting that show an overall survival advantage?  These setbacks should prompt us to ask, are we facing a systemic crisis in the adjuvant failure of targeted therapies or just having a string of bad luck?”

ErbB family of receptors

ErbB family of receptors

Dr. Sledge went on to emphasize that results from another large adjuvant trial, called the APHINITY trial–which is also studying the efficacy of dual HER2 inhibition versus use of a single anti-HER2 agent–will be of great interest in light of ALTTO’s negative results.  APHINITY is a large Phase III randomized, double-blind, placebo-controlled trial that is comparing the efficacy and safety of chemotherapy, trastuzumab, and placebo against chemotherapy with trastuzumab and pertuzumab (Perjeta®) as adjuvant therapy in patients with HER2+ primary breast cancer.  Like trastuzumab, pertuzumab is a monoclonal antibody that targets the HER2 receptor, but it binds to a different part of the HER2 molecule and thus does not compete with trastuzumab.  Pertuzumab prevents the pairing (called “dimerization”) of HER2 with other HER (ErbB) receptors (HER1 [EGFR], HER3, and HER4), particularly the pairing of HER2/HER3, blocking the signaling pathways within the cell that lead to tumor growth.

 

And in fact, as I wrote in a previous blog posting, “All eyes will indeed be on the large adjuvant APHINITY trial …,” because last year, for the first time for any cancer, FDA approval was given to an oncologic agent—i.e., pertuzumab– in the neoadjuvant setting, based on pCR as a primary endpoint.  This was in no small part because of the ongoing, fully accrued APHINITY trial, whose results, if successful, could support conversion to regular FDA approval or, if negative, will even further emphasize the need to completely re-evaluate our current approach to drug development and clinical trials for agents to treat early breast cancer.

On this last point, when the Oncologic Drugs Advisory Committee (ODAC) voted on whether to support Accelerated Approval for pertuzumab in combination with trastuzumab and chemotherapy for neoadjuvant treatment of HER2+ breast cancer, many ODAC panel members (including myself as the patient representative on the panel) stressed a critical point: that if the results of the APHINITY trial were in fact negative, the sponsor, Genentech, should voluntarily remove pertuzumab for the neoadjuvant treatment of early-stage breast cancer.  As our committee chair, Dr. Mikkael Sekeres, emphasized to the FDA, “All eyes will be on the confirmatory APHINITY trial and on you to verify this initial signal of efficacy and to confirm the bandwidth of safety that we have seen so far.”

In light of the ALTTO findings, APHINITY’s long-awaited results will now carry even more impact, whether they are positive or negative.  In concluding his discussion, Dr. Sledge emphasized that trial failures such as ALTTO “must be elucidated in order to move forward and create new successes.”

At this writing my cousin has received two treatments thus far with chemotherapy, trastuzumab, and pertuzumab.  And in her husband’s words, per her oncologist’s first assessment of her response, “the couple centimeter lump of cancer on her neck” (which had resulted in her stage IV diagnosis) “has gone away.”  I pray daily that this means she is a strong responder to dual blockage with trastuzumab and pertuzumab.  I pray that some day she’ll hear the words that her stage IV breast cancer is now “NED,” meaning No Evidence of Disease. And I pray that in the words of Dr. Sledge, “ … Move forward, we shall, in HER2+ positive breast cancer” and that the many novel approaches actively being researched today will move us closer to the day when we have finally found a cure or cures for stage IV breast cancer–for my cousin, for my far too many friends with this disease, and for all those with stage IV disease.  Please pray with me.