Monthly Archives: October 2009

Sad and Frustrated

I know 40,000 women die from breast cancer every year.  The fact that this hasn’t decreased very much over the years is why I started blogging for change.  What we have been doing – the pink ribbon campaigns, the fundraising, the awareness, the self-exams, the mammography, the research – hasn’t prevented those deaths from occurring year after year.

But it takes the wind out of your sails when one of those 40,000 women was your friend.  Yolanda was a friend, a fellow breast cancer advocate, and a dear, sweet soul.  She died this week, at the age of 36.

So today, the last day of breast cancer awareness month,  I’m sad and frustrated.  Will we ever make progress so that young women, sisters, mothers, aunts, wives, and grandmothers stop dying from this disease?  How do we come together to encourage innovation, to remove the barriers that are preventing real progress, and to fight the powerful, commercial forces that are taking advantage of people’s fears of this disease?  Are there smart, creative scientists out there who can figure this disease out?  Can we help them get there?

There is nothing to do but keep trying.  As Sen. Kennedy said, the work begins anew, the hope rises again, and the dream lives on.


Funding Cuts Lead to Shut Down of Program on Environment and Breast Cancer

I was sad to get a notice in my inbox yesterday that the Program on Breast Cancer and Environmental Risk Factors at Cornell University has lost it’s funding.  The program has been providing science-based information on environmental factors and breast cancer risk for 14 years.  They have produced excellent videos and fact sheets on many  environmental factors and breast cancer risk.

Their website will be available for just a few more months.  They encourage anyone interested in these topics to download any of their fact sheets, newsletters,  or other materials, as they won’t be available in the future.  Topics include household products, pesticides, smoking, obesity, fruits and vegetables, estrogen, chemicals in the workplace, and many, many more.

If you have any interest in the environment and breast cancer, check it out before it’s too late.

The Secret is Out. Breast Cancer Problem Not Solved with Early Detection

A vigorous debate over cancer screening, and mammography in particular, has erupted in the media and across the blogosphere this week.  Two things prompted the firestorm.  The first, was a commentary published in the Journal of the American Medical Association, “Rethinking Screening for Breast Cancer and Prostate Cancer.”  The gist of the article is that after two decades of screening, more cancers are being found “early” but there hasn’t been the expected drop in later stage cancers.  Screening for these cancers hasn’t worked, like it has for colon cancer or cervical cancer.  Not only is mammography not finding the lethal breast cancers, but it’s leading to substantial overdiagnosis and overtreatment for non-threatening cancers.

What catapulted this article into the news, which isn’t saying anything really new or unknown by scientists, is that the Chief Medical Officer for the American Cancer Society was asked about the article by the NYTimes and gave a stunning response.  Dr. Otis Brawley said, “I’m admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated.”

Now the ACS and others are rushing to get out statements to reassure women that nothing has changed and they do still need to get those mammograms!  It’s like the cat got out of the bag and now they are trying their darndest to stuff it back in!  But I hope the public heard the message – they deserve to know what the scientists have known for years.  Screening mammography is just not doing a good job.  And it certainly isn’t the “cure” or answer to our problems with breast cancer.  What we really need is research on how to distinguish between the non-threatening cancers and the threatening ones, which often aren’t even picked up by mammography.

For more information on the real evidence read the statement on mammography released today by the National Breast Cancer Coalition.

Age and Breast Cancer: Mind the Gap

I was very excited this morning to see that some folks at the National Cancer Institute are concerned about the gap in our knowledge about breast cancer in different age groups, and the need to address this in research studies.  This is something I’ve been concerned about for awhile.  Over and over studies are showing that breast cancer in younger women behaves differently, and yet many treatment decisions for younger women are based on research studies with a majority of subjects having post-menopausal breast cancer.

So I was thrilled to see the commentary in the Journal of Clinical Oncology this morning by Dr. William F. Anderson, of NCI’s Division of Cancer Epidemiology and Genetics and his colleagues, “Qualitative Age Interactions in Breast Cancer Studies: Mind the Gap.”

They are encouraging breast cancer researchers to consider stratifying randomized control trials into different age groups for analysis.  By not taking age into account, current studies may be blurring age-specific sub-group effects, they say.

By stratifying by age to look at results of treatments, they point out it could benefit not only younger patients, who perhaps need more aggressive treatment than has previously been shown, but also older patients who may not actually derive as much benefit from treatments as previously thought, and might be able to avoid some of the harsh side effects from these treatments.

The authors contend that the age interactions are also more complex than a simple difference between pre- and post-menopausal age groups.  For instance, number of pregnancies increases breast cancer risk among women younger than 30 to 44 years but decreases risk among older women . And obesity is protective for women younger than 50 years but increases risk thereafter.

The authors conclude by saying that analysis of age-specific effects in randomized trials may help fill our gap in knowledge and understanding about tumor biology and optimize treatment until better markers are discovered for evaluating tumor characteristics and behavior.

Let’s hope the researchers are listening!

Too Good to be True? Adult Stem Cells For Breast Reconstruction?

There was a press release out of Arizona today on a new procedure  to use adult stem cells from fat to formulate new breast tissue that would grow its own blood supply.  The press release calls it “Natural Breast Augmentation” for breast enlargement, but also discusses the possibilities for reconstruction in breast cancer patients.  The technique sounds too good to be true.  Fat is removed from “saddlebags, love handles, lower abdomen, buttocks and thighs.”  Then the adult stem cells are harvested from the fat and placed in the breast area, along with some of the fat, resulting in breasts that “look and feel smoother” than those from conventional implant surgery.  Because of the stem cells, the tissue then grows a new blood supply.  Leading to potentially less complications than traditional reconstruction, according to the press release, which can have complication rates of up to 25%.

Maybe not too good to be true after all…..but the jury is still out.  At least 11 patients have undergone the procedure after lumpectomy, with good results.  However, it turns out that they are part of a “post-marketing” clinical trial being carried out by the same company Cytori, responsible for the Arizona press release.  Cytori developed the Cytori Celution System, which separates, washes, and concentrates the stem cells from the fat cells, before they are returned to the body.

I’m always leary when industry is driving medical advances with new procedures and devices.  This may turn out to be a great thing for breast cancer patients who want reconstruction, but let’s hope a cancer center or academic medical center gets interested and studies the utility and outcomes for this new procedure.


I turned up some research going on in this field at the University of Pittsburgh School of Medicine.  Dr. J. Peter Rubin, an assistant professor of plastic and reconstructive surgery, and co-director of the Adipose Stem Cell Center, was awarded a Presidential Award for his groundbreaking research on using fat-derived stem cells to engineer soft tissue.  Research he hopes will one day benefit breast cancer patients.  He has a grant from the National Institutes of Health titled “Injectable Engineered Tissue for Cancer Reconstruction.”

Today is Metastatic Breast Cancer Awareness Day

Forty years ago, women with breast cancer were viewed as tragic victims, and they mostly dealt with their disease in isolation.  But over the years, the pink revolution, and the “coming out” of celebrity women such as Betty Ford, has brought the disease out into the light.  Those with the disease were transformed from victims to survivors.  Popular culture has even portrayed the breast cancer experience as an enlightening or enriching experience.  There is now a pink cheerfulness and sisterhood associated with having survived and beaten this disease.

But those living with Stage IV disease have been left out.  Unfortunately, women living with advanced breast cancer are still isolated in our society.  And perhaps the pink revolution has made it even more difficult for these women.  Because now, many people, and even some within the breast cancer community, want to view those with metastatic disease as those who didn’t do what they were supposed to, didn’t get their mammograms on time, didn’t fight hard enough, didn’t stay cheerful enough, didn’t exercise or eat well.  It’s much easier this way than facing the reality of breast cancer, and how little control we have over the disease.

The reality is that approximately 5% of the over 180,000 women diagnosed with breast cancer each year have Stage IV or metastatic disease at the initial diagnosis, and between 20-30% of the rest will have metastatic spread of the disease in the future.  By 2011 there is expected to be 162,000 women living with metastatic breast cancer in the U.S.,  according to Dr. William Gradishar from Northwestern University Feinberg School of Medicine.

It’s time we bring those living with metastatic breast cancer out into the light too.

For more information on Metastatic Breast Cancer Awareness Day click here.

For information and support:

Metastatic Breast Cancer Network

NeoMatrix Promotes EARLY Act

Wow.  That didn’t take long.  Once again, private industry is poised to exploit women’s fears of breast cancer for profit.  This time – women under 45.

NeoMatrix, the makers of the HALO Breast Pap Test, are throwing considerable resources toward ensuring passage of the EARLY Act.  The Act calls for a national education campaign on the risks of breast cancer in young adult women (under 45) with an emphasis on early detection.  The legislation was introduced in March by Congresswoman Wasserman-Schultz, a 42-year-old breast cancer survivor.  The HALO test is a kit used to obtain nipple fluid to assess breast cancer risk that the makers recommend to  “be an annual test for all non-lactating women 25 and over.”

By early September NeoMatrix was hosting a congressional reception on Capitol Hill in support of the EARLY Act.   And that was only the beginning.

The EARLY Act has strong support in the House, but has faced strong criticism from cancer experts and epidemiologists, including the chief medical officer for the American Cancer Society, and does not yet have majority support in the Senate.  On October 1, NeoMatrix launched a slick website to provide “an easy way for EARLY Act supporters to tell their U.S. senators to support the bill,” according to their press release.

Why is NeoMatrix so passionate about passage of the EARLY Act, even though leading experts have serious concerns?  Well, just as AstraZeneca, makers of the anti-breast cancer drug Tamoxifen, loved the idea of National Breast Cancer Awareness Month, NeoMatrix loves the EARLY Act because it will increase demand for their product, the HALO test that promises to warn young women of an increased risk of breast cancer.

By marketing the test with the Pap name the company also hopes to connect the test with the successful Pap smear for cervical cancer, though in fact, the HALO test is quite different.  The test does not have the potential to find cancerous cells.  Only about half of women will produce fluid for the test, which in itself is billed as a “normal” result.  Of those who produce fluid, one to two percent will have atypcial cells.  This is associated with a higher risk of breast cancer in the future, however, according to their website “atypia often corrects itself.”  Physicians don’t know how many of the women with a “normal” result or with no atypia, will in fact develop breast cancer in the future.  And of those with atypia, physicians have no research to guide the appropriate course of action, particularly when some will resolve on its own.

The EARLY Act, or The Breast Cancer Education and Awareness Requires Learning Young Act of 2009,  is focused on creating a national campaign to  “increase public awareness of the threats posed by breast cancer in young women” and on “awareness of risk factors and achieving early detection through community-centered informational forums, public service advertisements, and media campaigns.”

But haven’t we learned our lesson?   We’ve already had twenty-five years of breast cancer awareness campaigns and very little progress.  The kicker is – early detection is even less likely to be the “best weapon” in the fight against breast cancer in young women.  Especially with pre-menopausal breast cancer we can’t afford to lose focus and resources on what really matters.  Researchers don’t know why, but breast cancer is often more aggressive in younger women.  We need much much more than awareness and early detection to beat this disease.  Many researchers believe that aggressive cancers behave differently from the beginning, and may be laying the foundation for recurrences or metastasis from the get-go.   Why do some breast cancers that are caught small and early still go on to take women’s lives?  Why do younger women tend to have these aggressive cancers?  Nobody knows, but this is what we need to be focusing on.

We can’t make good public policy and make progress in eradicating this disease in young women by letting industry guide us and ignoring those who have dedicated their lives to studying breast cancer.  In 25 years, will we be bemoaning the over-commercialization of breast cancer “awareness” in young women too?  Will we have our own color?

My ten-year-old daughter, who now has an increased risk of pre-menopausal breast cancer simply because of my diagnosis, deserves much better than industry fueled campaigns of good intentions.  She deserves the benefit of the best minds and the best scientists in the field working for REAL progress in understanding this disease.  For her sake, I’m not settling for another misguided awareness campaign.  I’m holding out for the real answers on aggressive pre-menopausal breast cancers, their treatment, and most of all, their prevention.  It’s not the easy or popular stance right now, but as I tell my three kids, doing what’s right usually isn’t.

Metastatic Tumors ARE Different From Primary Tumors

Great research published today in Nature.  Canadian researchers have identified the complete genetic code for a metastatic breast tumor and compared it to the genetic code for the primary tumor.  This was in human breast tumors (the metastatic tumor found nine years after the primary) – not in a mouse or laboratory cell line.

Why is this exciting?  Because there were differences in the codes.  There were 19 additional mutations in the DNA of the metastatic tumor that weren’t there in the primary tumor.  The next step is for scientists to figure out what these differences mean.  How are these changes in genotype (or DNA) changing the behavior of the tumor cells?  Once scientists know that, targeted therapies can be developed to interrupt the metastasis or spread of these tumor cells.

For those of you who want the scientific jargon, the investigators sequenced the genome and transcriptomes of an estrogen-receptor positive metastatic lobular breast cancer and found 32 somatic non-synonymous coding mutations present in the metastasis. They then measured the frequency of these somatic mutations in DNA from the primary tumor of the same patient. Five of the 32 mutations (in ABCB11, HAUS3, SLC24A4, SNX4 and PALB2) were prevalent in the DNA of the primary tumor removed at diagnosis 9 years earlier, six (in KIF1C, USP28, MYH8, MORC1, KIAA1468 and RNASEH2A) were present at lower frequencies (1–13%), 19 were not detected in the primary tumor, and two were undetermined.  The authors conclude that a low to intermediate grade primary tumor goes through significant mutational evolution during the metastatic process.

Great research, eh?

More Clinical Evidence that Metabolism of Tamoxifen Effects Recurrence

More evidence out today that women taking tamoxifen for hormone responsive breast cancer should determine if they are good metabolizers of the drug.  Poor metabolizers have a significantly higher rate of recurrence, according to a study published online today in the Journal of the American Medical Association (JAMA).

Tamoxifen by itself does not inhibit the growth of tumor cells.  It must be converted to an active form, which requires an enzyme called CYP2D6.  The problem is that there is genetic variation in CYP2D6 among different women.  Some women are completely missing the genetic code needed to make the enzyme, while others have just half of the genetic code needed.

Researchers from Germany and the US analyzed tumor tissues or blood samples from 1325 breast cancer patients receiving tamoxifen.  By looking for the genetic code for CYP2D6, or DNA genotype in the samples, the patients were grouped into high metabolizers (n=609), intermediate metabolizers (n=637) and poor metabolizers (n=79).

After nine years of follow-up, recurrence rates were 14.9% for high metabolizers, 20.9% for intermediate metabolizers, and 29.0% for poor metabolizers.  The recurrence rates were statistically significantly different between high metabolizers, and both intermediate and poor metabolizers.  However, there was not a significant difference in overall survival.  This doesn’t mean that there isn’t a difference in overall survival, but that this study may not have gone on long enough or the size of the study may not be big enough to show the difference statistically.

Anyone have experience on CYP2D6 testing and insurance coverage?  Would love to hear about your experiences!  The evidence certainly seems strong enough now for those of us taking tamoxifen to be asking our oncologists about testing.

Yet another possible problem caused by breast cancer treatment

New research suggests that radiation treatment may be causing some hypothyroidism in breast cancer patients.

In a study published online today in the Journal of Radiation Oncology, women who had been treated for breast cancer with radiation were significantly more likely to have hypothyroidism than women from the general population.

In the Norwegian study, self-reported thyroid disease was higher in the 403 breast cancer patients who had had radiation therapy, compared to an age-matched control group from the general population (18% vs. 6%, p < .001).   The increased thyroid disease was mostly due to an increase in hypothyroidism after breast cancer diagnosis and treatment.

The investigators conclude that hypothyroidism is significantly increased in women after treatment for Stage II/III breast cancer and that radiation to the thyroid gland may be a contributing factor.   They recommend that breast cancer patients be screened for hypothyroidism.