Tag Archives: Len Lichtenfeld

Still In Search of the Next Metastatic Breast Cancer Celebrity Spokesperson…

As I read Angelina Jolie’s New York Times article, I thought, “Wow, a celebrity spokesperson for hereditary breast and ovarian cancer! That will really focus some attention on this issue!” And then I compared Jolie’s statements to those of other celebrities who have shared their own experiences with metastatic breast cancer.
This didn’t take very long because there aren’t any.

Edwards made her metastatic announcement in 2007.

Elizabeth Edwards is probably the closest we’ve come to having a high-profile spokesperson –certainly she is the only one I can think of since my own metastatic diagnosis in 2009. I wouldn’t care to be a celebrity let alone an ill celebrity in the national spotlight. I can’t comment on Edwards’ personal or political life. But I am so grateful that she talked about having metastatic breast cancer. I hope Cate Edwards and her siblings know what that meant to others living with the disease.

I remember coming across an article CNN’s Shahreen Abedin wrote in 2007. It was called “Surgeon Offers Answers on Metastatic Breast Cancer.” It was straightforward and, because Edwards had bone mets like me, I learned a lot about my specific metastatic issue.

CNN: What are survival rates for Stage IV metastatic breast cancer?

Dr. Rache Simmons: It depends on where the cancer is located. Patients can do very well for years if it’s isolated just to the bone. If there is a speck on the lungs or other organ that turns out to be cancer, that could mean a much worse prognosis, a much shorter life expectancy.

The bone is often the first place to spread to with breast cancer. Most breast cancer systemic recurrences (meaning the kinds that spread to the rest of the body) happen in the next two years after the first time the cancer is diagnosed. The next plateau is within five years. After that, it’s very rare to have recurrences. However, recurrences do still happen, even as late as 10 years later. But that’s very unusual.

For patients with small cancers and negative lymph nodes with no evidence of disease spread at the time of diagnosis, still about five to 10 percent of women end up developing metastatic disease.

If the recurrence happens later in the five-year period after diagnosis, rather than earlier, that’s a good sign; the patient will probably have a better response to the treatments. If the recurrence happens very soon after diagnosis, like six months, a year, or 18 months, then patients tend to do worse.

CNN: What would the standard treatment be once recurrence is diagnosed?

Simmons: Probably hormonal therapy. Mainly anti-estrogen types of treatments — like Tamoxifen or aromatase inhibitors. Sometimes chemo is an option, either in addition to or instead of hormone therapy.

Sometimes radiation therapy to localized area, especially if the patient is in pain.

To find it accidentally, when the person is having no pain, is a very lucky thing. Usually what happens is a patient develops a pain and then gets X-rays — and then they find it. [The Q&A continues here.]

The article gave me a lot of  hope when I really needed it.

I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer. The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”

Most people with metastatic breast cancer have previously been treated for early stage breast cancer. Not me–I was Stage IV from my initial diagnosis, something that happens to between 6% and 10% of those living with MBC.

My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”

Not very helpful to my particular situation.

Prior to my metastatic diagnosis, when it was thought I probably had Stage III breast cancer, my would-be surgeon gave me an 85-page booklet called “Breast Cancer: Treatment Guidelines for Patients.”

I am a Phi Beta Kappa graduate of the University of Illinois. I would rank “Breast Cancer: Treatment Guidelines for Patients” somewhere between “Beowulf” and James Joyce’s “Ulysses” in the annals of Massively Complex and Confusing Literature. Beyond the dense text, it also had flow charts seemingly inspired by a Chinese menu: Pick One From Each Column: Type, Tumor Size, HER2 and Receptor Status, etc.

Eventually, I came across “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”

This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”

The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”

This was certainly a top-of-mind question for me.

“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”

Those few sentences gave me a lot of hope.

“There is something in our national psyche that makes the diagnosis of cancer in a celebrity something more important,” noted ACS’ Dr. Len Lichtenfeld in 2008 following Christina Applegates’s revelation she’d had a BMX. ” They rise above the rest of us when sadness impacts their lives, and for many of us their disease becomes our disease…”

I hope Angela Jolie’s article will help someone else wrestling with hereditary breast and/or ovarian cancer issues.

In one intervew Edwards touched on what she termed “the competing responsibilities” of being in in the public eye with metastatic breast cancer:  “One [responsibility] is to say to people with breast cancer, ‘This is really hard what you’re going through. Believe me, it’s hard for everybody. … This is perfectly normal to feel exhausted or perfectly normal to feel irritated sometimes, and don’t think less of yourself because those are your feelings.’ On the other hand, we don’t want to be treated as if we’re invalids. So when I’m feeling lousy, I don’t feel like I have the same permission to share that, but I do want people to take care of us — to take care of my sisters, in a sense.”

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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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Can’t See the Metastatic Forest for the Breast Cancer Screening Trees

Others can speak far more knowledgeably and eloquently about the recent pink ribbon funding controversy. My concern is that we are missing the forest for the trees. Setting aside the funding issue, let’s consider the truth worth of these exams. Screening and self exams can be helpful. But let’s not kid ourselves. These tests are frankly not that great.

“Women are regularly told that screening mammograms save lives,” says the National Breast Cancer Coalition. “Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.”*

Essentially, we have better imaging technologies. The  average size lump found by first mammogram is about the size of a dime (~1.5 cm) but even tumors as small as pencil erasers can be seen.

The real problem is we don’t know WHAT we are looking at.

We don’t know  WHY some tumors spread beyond the breast.

We don’t know HOW to stop metastatic growth.

We are seeing more and more breast cancers earlier and earlier. In some cases, people are overtreated: It’s the oncological equivalent of using a shotgun to kill an ant. Many women may be diagnosed and treated for a cancer growing so slowly it might never have caused any symptoms or threatened their lives.

As surgeon/scientist/blogger David Gorski, explains, “… for mammographically-detected small tumors, almost always those detected by screening mammography, it’s not so clear whether all of these need to be treated. Overdiagnosis is being increasingly appreciated as a significant problem, and, indeed, may account for as many as 1 in 3 breast cancers detected by screening mammography (although more common estimates are on the order of 20%). There is even evidence–not bulletproof by any means, but intriguing evidence–that as many as 20% of mammographically detected tumors may actually spontaneously regress.”

Screening is just one tool. We need to look at the bigger picture. Unfortunately, the under treated are always with us:

“If we did what we already know, at least 37% of cancer deaths in people between the ages of 27 and 64 could be avoided right now,” writes ACS’s Dr. Len Lichtenfeld. “Where is the national conversation about the fact that poverty is a carcinogen? Are you talking about it? Is the media talking about it? If the silence is deafening, then perhaps you have your answer. “

Finally, as much as I have a vested interest in breast cancer research, it shouldn’t come at the expense of addressing other diseases. I concur with ACS’s Dr. Otis Brawley:  “The wisest advocacy for cancer science is support for more money for cancer research in general and support for funding the best science and encouraging scientific investigators to maintain an open mind,” says Brawley.  “Scientists must look for additional applications of findings beyond just their cancer of interest.”

You’ve probably heard of the chemotherapy drug Herceptin, which is used to treat about 25% of breast cancer patients. It was developed to treat neuroblastomas and gliomas, both cancers of the nervous system, but it didn’t work for those cancers.
Another example, cisplatin, was first developed as a treatment for testicular cancer.  It is now the most commonly used chemotherapy in the treatment of lung cancer and ovarian cancer. It is also used in some breast cancer treatments. The drug oxalaplatin used in colon cancer therapy was developed from cisplatin.  So testicular cancer research benefited a number of other cancers.
Similarly, the drug leuprolide was developed in the mid-1980s as a hormonal treatment for metastatic prostate cancer. This drug has since been FDA-approved for not only treatment of metastatic prostate cancer, but also premenopausal breast cancer, endometriosis, and precocious puberty.

The number of drugs that were developed for one disease but ended up being useful in others  is legendary and goes beyond cancer.

*Women age 40 and older should have mammograms every 1 to 2 years. Women who are at higher than average risk of breast cancer should talk with their health care providers about whether to have mammograms before age 40 and how often to have them.

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