Help Wanted: Where is Our Metastatic Breast Cancer Celebrity Spokesperson?

You know what’s weird about metastatic breast cancer? It has no celebrity spokespeople.

Well, we sort of have one. Actress Marcia Strassman, best known for playing Gabe Kaplan’s wife on “Welcome Back Kotter,” has spoken about having metastatic breast cancer. Strassman presented with bone mets in 2007. Just as a First Lady or a Miss America Pageant contestant advances a particular cause or platform, so, too, does Marcia Strassman. She encourages medical compliance–specifically Novartis pays Strassman to talk about her experience with Zometa and why it is important to get these bisphosphonate infusions every 28 days (or as one oncologist recommends).

Those who don’t have metastatic breast cancer may be more familiar with another bisphosphonate: Boniva. You’ve probably seen the commercial starring Gidget aka Sally Field.  As Consumer Reports says, “Great Spokeswoman, Misleading Ad: … [the convenience Field touts] comes at a price—it can set you back about 10 times the cost of the similar drug alendronate (the generic version of Fosamax). No wonder Boniva’s backers, Roche and GlaxoSmithKline can afford to invest in a big-name celebrity to pitch it. Interestingly, studies don’t show that Boniva is any more effective than other bisphosphonates.”

You can see why we metsers might feel a little slighted. Everyone else get Sally Field urging them to get their bone boosters. And we get….Mrs. Kotter.

Beyond Marcia Strassman, who concedes she is not “a huge celebrity,” we don’t have any nationally known people with metastatic breast cancer speaking on our behalf.

Maybe we should count our blessings.

Sheryl Crowe had a lumpectomy and 7 weeks of radiation. She says her cancer was caught in the “earliest of stages…I am a walking advertisement for early detection. ” On a national television appearance Crowe implied there’s a connection between drinking water in plastic bottles left in a car and exposed to the sun’s heat and getting breast cancer. Although Crowe didn’t specifically suggest that’s why she herself got cancer, many viewers made that assumption. But as this report notes:  Dr. Rolf Halden of the Johns Hopkins Bloomberg School of Public Health [says] consumers face a much greater risk from potential exposure to microbial contaminants in bottled water — germs, to you and me — than from chemical ones. For that reason, most experts suggest not refilling or reusing empty bottles.

In 2012, Crowe announced she had a noncancerous brain tumor (i.e, a meningioma ). Crowe theorized her cell phone may have led to the tumor. Science writer Benjamin Radford refutes this notion: “While concern over the potential harm of cell phones is widespread, the vast majority of scientific research does not support the idea that cell phones are dangerous,”says Radford. “Repeated scientific studies have failed to find good evidence supporting the position that EMFs or cell phones damage human health.”

Crowe has shown her power to reach millions. But she doesn’t seem to be the best informed spokesperson.

In 2008, actress Christina Applegate, then 36 years old, had a double mastectomy after testing positive for the BRCA1 mutation. Applegate, the daughter of a breast cancer survivor, had been getting mammograms since she was 30 years old.  “My doctor said that the mammograms weren’t enough for me because of the denseness of my breasts,” Applegate told Oprah Winfrey in 2008. “He suggested that I get an MRI.”

According to this article: [Applegate] learned early detection may not come from a mammogram. Christina says she will fight for women to have access to MRIs and genetic testing, which many insurance companies won’t pay for.

This is certainly a worthy message and one that is championed at www.areyoudense.org and FORCE (“fighting heridiatry breast and ovarian cancer”).
So far, so good. But Applegate also said she was cured: “[I’m] absolutely 100 per cent clear and clean,” Applegate said on a 2008 GMA appearance. “It did not spread. They got everything out, so I’m definitely not going to die from breast cancer.”

Ooops. . . ACS’ Dr. Len Lichtenfeld noted we don’t know the specifics of  Applegate’s disease. “Breast cancer, in fact, is a life long disease,” wrote Dr. Lichtenfeld. “That’s what many women live with every day…The medical facts are that bilateral mastectomies as a treatment for breast cancer are not a cure, especially in BRCA positive women.   They are the best strategy we have to reduce the risk of another breast cancer in the opposite breast, but they don’t remove risk completely.  Even in the hands of the best surgeons, bilateral mastectomies in a BRCA positive woman who has not had breast cancer reduces the risk of a new primary breast cancer to about 10%.  That’s because even in the best surgical hands, there is still some breast tissue left behind after these procedures.”

In 2004, singer Melissa Etheridge was diagnosed with Stage 2 breast cancer. Etheridge had a lumpectomy, but the surgeons also had to remove 15 lymph nodes to make sure the cancer hadn’t spread. She then went through five rounds of chemotherapy and radiation.

More magazine recently asked Etheridge what about the key to a breast cancer cure–what needs to happen?  “I have a very strong belief that this cure that we’re looking for is inside us,” Etheridge responded. “That 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. That’s the cure.”

Thank you, Melissa, don’t call us. We’ll call you…

 

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24 thoughts on “Help Wanted: Where is Our Metastatic Breast Cancer Celebrity Spokesperson?

  1. jschoger says:

    This was great, Katherine…..will rt when I get back home Monday!

    With spokeswomen like Crow and Etheridge who needs enemies…
    Sent from my Verizon Wireless BlackBerry

  2. Scorchy says:

    Well, that knowledge left room on the head of the pin. Criminy.

  3. Joanna Farrer says:

    Another great piece of writing Katherine. Perhaps if the celebrities are going to make such inane comments and only be motivated for financially reasons then perhaps we are better off with out them.
    One the other hand I do feel the Noreen Fraser is doing a pretty outstanding job and seems to get the stars somewhat involved.
    Love the naivety of Sheryl Crowe and Melissa Etheridges’ comments, gave me quite a chuckle that they could be SOOOO ill informed. Pretty good indicator of the general community isn’t it???
    I do agree with you that we need to get our message out in to the wider community to have some real effect. How do we get to those that can make a difference????
    Thanks for your article.
    Very motivating.

  4. Tracy says:

    I live in the UK and we finally have someone who has been honest about what metastatic BC means and how quickly it’s happened. http://www.dailymail.co.uk/tvshowbiz/article-2224250/Bernie-Nolan-reveals-cancer-come-time-incurable.html

  5. “Awareness” is a good thing, but here’s where the “awareness” part of breast cancer needs some help. That pink ribbon is making the public “aware” of things that that are not always accurate. If people (including celebrities) were made “aware” of the true facts, statements like this wouldn’t exist.

    We’re all “aware” of the pink ribbon. Color is so emotional…pink just says “party” and “fluffy”. I’m thinking of the HIV/AIDS ribbon…red. It’s serious and powerful. I know METAvivor has a ribbon, but maybe some other symbol, other than a ribbon can be publicized…. one that people would see and know what it stands for. (?)

    I often thought that the “pink ribbon” should be turned on its side and made into an “infinity sign” to symbolize that even though you may not show evidence of the disease, it’s always with you and you live with it…no matter what the stage.

  6. Good job once again, Katherine. This is one of those things about BC that continues to blow my mind, the naivete of those who have it. Whenever I tell one of my bc sisters the facts after they have announced their cancer free status, they look at me as if I had just grown horns. We simply need to keep going. Keep talking and keep fighting. If we can persuade half of those we speak to, more attention will be given to mets.
    Suzanne (Stage 2b – painfully aware of what may come and supporting my METS sisters every chance I get)

  7. Katherine, What a perfect commentary this is for so many reasons. Like always, you “cut to the chase” or shall we more bluntly say, “cut through the bull.” Thank you!

  8. Chandra says:

    Then there’s Giuliana Rancic stating she’s 100% cured because of early detection. The misinformation is galling, particularly when these folks have a platform and could actually get the word out!

  9. Judy Bowlin says:

    Hi , I am a 10 & 1/2 year stage 4 breast cancer warrior, I have been stage 4 from the beginning of diagnosis at age 40. I agree we need a spokesperson for cancer warriors with mets…Hollywood wants to make it look fun and glamourous….

  10. I never cease to be amazed and saddened by the celebrities who get breast cancer, are treated successfully at least once, and then tell everyone proudly that they’re “cured” and use their platform to spread the gospel of “early detection” in every interview or and/or become spokespeople for “pink awareness” campaigns, especially as shills for Big Pharma or Big Mammography. A close second are the celebrity women who have prophylactic mastectomies and then tell everyone they are “100% guaranteed not to ever get breast cancer.” And then there are the young celebs whose mothers were successfully treated for breast cancer, doing the same gigs. “My mother is alive today because of early detection. That’s why I’m crisscrossing the country on behalf of GE (major manufacturer of mammography machines) telling you to remind the women you love to get a mammogram.”

    Trying to tell people the truth when they keep hearing this stuff from celebrities is like trying to sweep back the ocean with a broom. If only the celebrities would use their fame to tell the TRUTH!

  11. Katherine,

    This is an excellent post, and you are right: there are no celebrities coming forward with metastatic breast cancer. Why is that? I’ve wondered this myself. And Chandra’s comment really hit home: I can’t stand that the Rancics have turned cancer into a reality show — except where’s the reality?

  12. MBCNbuzz says:

    Right on target, as always, Katherine. Maybe we should have a poll where people could vote which celebrity they are betting on to become metastatic. (Sick, I know….)

  13. Laurie says:

    My response to Melissa Etheridge was less polite than yours. Good thing no one has told me to my face recently that if I do enough inner work my cancer will go away. Ugh.

  14. […] Where is our Metastatic Breast Cancer Celebrity Spokesperson? –  ihatebreastcancer blog […]

  15. The Accidental Amazon says:

    Ah, Katherine…it’s so refreshing to come back from my self-imposed blogosphere/social media/pink-hell-avoidance sabbatical to read one of your astringent and perceptive posts. Thank you. I look forward to catching up more fully. Famous people should keep their day jobs, methinks.

  16. Oh, thank you. This is a much better response to our celebrities than I could formulate at midnight on Facebook after seeing the Sheryl Crowe water bottle “thesis”. Can’t wait to share!

  17. […] their own experiences with metastatic breast cancer. This didn’t take very long because there aren’t […]

  18. Scarlett says:

    What about Noreen Fraser ?

  19. […] Where is our Metastatic Breast Cancer Celebrity Spokesperson? –  ihatebreastcancer blog […]

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