Haven't posted in ages I know. In case you didn't know yet those scans were all good. My regimen seems to be working. So that's way cool.
Here is the text of the talk I gave the other night. It's long (a 45 minute talk) so I don't blame you if you don't feel like slogging through. I will also figure out video of talk to link here.
Our die-in is Tuesday and Monday I will speak at a CMH awareness event at the Astoria Column, where they will, yes, light the column pink for the rest of the month. Yup.
So here is the talk. It's called MYTHBUSTERS: Real Breast Cancer Awareness
My name is Laura and I am a cancer patient. This is actually my full time job now. As such, I’ve thrown myself and all my free time to education (of myself and others) and advocacy. I can’t really work as I never know what is going to surprise me next about this disease. This won’t be the happiest talk, but I hope it’s an empowering one. Knowledge is power, and the more we know the more we can make choices about what causes we choose to support, how we talk about the behemoth that has become Pinktober, and what we can do about it. My hope is to change the breast cancer awareness paradigm throughout our community to one of accurate information and support of causes that actually help. As my friend Beth so simply put it: “If all you want to do is to say ‘Hey you, there is a thing and it is called breast cancer’ then yes, awareness is the right tool.”
A caveat: I’m not here to say that mammograms or early detection are bad or not worth doing. Of course I think all women should have mammograms! Of course I agree that cancer should be detected so it can be treated as soon as possible! I am here to point out that for at least 30% of us it is much more complicated than mammogram-detect-treat-cure.
In the meantime, those of us with metastases have cancer treatments for the remainder of our lives. Some aspects of treatment have improved. There are better anti-nausea medications and more targeted therapies. Radiation treatment is more technologically advanced and can avoid doing such severe damage to surrounding areas. Data tells surgeons now that cutting more is not necessarily better. That said, the basic treatment has remained the same for decades. Some call it poison/slash/burn. Chemo/surgery/radiation. Chemotherapy can damage your heart, nerve endings, cognitive function, to name just the tip of the iceberg. Mastectomies and breast reconstruction are not, as some of the cult of positive thinking insist, an opportunity for a nice boob job. Even our less invasive surgeries leave lasting effects on mobility, chronic pain, damage to nerves, and lymphedema. Radiation is Forever. It seems like the “easiest” piece, but its lasting effects are some of the hardest. So we’ve advanced, but in decades the advances can seem relatively small when compared with advances in say, technology or communiations in the same half century or so. Treatment still comes with brutal ongoing side effects and late effects, and the risk of toxicity and irreparable damage.
Here are some breast cancer awareness campaigns I’ve seen recently on social media.
In 1982 Susan G. Komen died of metastatic breast cancer. Her sister Nancy Brinker founded Susan G. Komen for the Cure. Komen succeeded in bringing awareness of the scourge of breast cancer to everyone, which had previously been taboo. But the organization has failed to change with the times, and with the facts. The cause has been commercialized and sexualized and made into silly “awareness” games. We are all aware by now, and need a cure. Actually, it is not about the “ta tas” or breasts, it is about our lives, and saving them. I don’t know anyone who would rather keep their breasts than keep their lives. And finally this from an adult entertainment company in CA. No words.
An article in Psychology Today about Amy Robach’s misinformed information about breast cancer, author Gayle Sulik said “the plain truths about breast cancer—namely biology and large bodies of evidence—keep getting lost. Sadly, in their place, mythology and wishful thinking.”
There are too many breast cancer myths to debunk these days, partly because of the sexualization and commercialization of the breast cancer cause. And partly because of the steamroller of misconceptions of this disease as an “easy” or “curable” cancer that gets a lot of attention. As medical sociologist Gayle Sulik noted, “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources. Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.” I’ve chosen some of the more pervasive myths to address for you tonight. I have slides with sources of information at the end, but please talk to me afterwards if you want more specifics, and I’d be happy to correspond with you via email with explanations and sources of the data I’ll share. They are mostly secondary sources from legitimate organizations, as sometimes getting into medical web sites is tough.
1. Early detection = cure
Just two weeks ago Terry Gross interviewed a prominent breast surgeon. She insisted that mammography is the best tool. However, according to medical sociologist Gayle Sulik, there was no significant discussion of data or evidence to support the surgeon’s views and many of them could be called into question, but she was struck most by the mammogram conversation. In fact, eight randomized, controlled trials of mammography screening have found that the benefits are far smaller than early evidence suggested, and the hazards have been largely ignored. Up to 30% of people diagnosed with breast cancer stages 0-3 will have a metastatic recurrence. It seems to be pretty random who metastasizes. An informal poll of my very large online support group gave me these 385 responses. These are all mets patients. Initial diagnoses were 15 at stage 0, 47 at stage 1, 108 at stage 2, 62 at stage 3, and 153 at stage 4. Many of the stage 4s are younger women, who have dense breast tissue, who are not candidates for screening, who may not have been taken seriously about symptoms at such young ages. Active disease may stay at bay for years, months, weeks, or not at all. Breast cancer is not one disease. There are subtypes, and within those subtypes each individual’s response to the disease and its treatment. If you have a certain subtype of breast cancer and are treated with the standard of care for that subtype you may have a complete response (this is good), a partial response, or your cancer may not respond to the available treatment. No one knows why some people respond well to treatment and others don’t. This is one of my biggest frustrations. My oncologist is fond of saying that my response to treatment will depend on the biology of my individual cancer. There is no catch-all. Some subtypes have biological markers like hormone positivity or an overexpression of the HER2 protein, or both, for which there are targeted therapies. Some breast cancer is called triple negative and has no targeted therapies at this time. Chemotherapy is the only option and that means if it metastasizes, a triple negative cancer patient will be on chemo for the rest of her or his life. She may die of cancer, but she may also die of complications from treatment.
2. Breast cancer is more survivable than ever.
Survival rates are increasing, it’s true. However, diagnoses are also increasing in young women as well as the older population. The number of deaths has been over 40,000 per year in the U.S. and about half a million worldwide, unchanged, for at least twenty to thirty years. The same number of people are dying each year, to the tune of 1430 per day worldwide and 110 per day in the U.S.
3. Early detection is always possible with regular mammograms
Early detection works well for slow growing cancers and those easily seen on mammograms. There are actually different kinds of breast cancers that manifest differently in the body. Ductal cancers and lobular cancers are named by the way they look under a microscope. Ductal cancers account for 80% of breast cancers and tend to grow together in a mass, making them somewhat easier to find, though if the breast tissue is dense it is more difficult. Lobular cancers, 10% of breast cancer diagnoses, tend to grow in more than one area of the breast in a pattern like a sheet, making them more difficult to find. Lobular breast cancer is sneaky and difficult to detect in its earlier stages. In some rarer types of breast cancer, the cancer cells may not form a tumor at all. For instance, inflammatory breast cancer is extremely aggressive and first detectable on the skin, making it at least stage IIIb and often stage 4 at initial diagnosis. All this to say, breast cancer advocacy for screening is WAY more complex than encouraging mammograms for early detection.
4. Late stage diagnoses = neglect by the patient to spot early indications of disease or be screened in a timely fashion.
A woman in my support group was diagnosed stage IV at age 34. Her symptoms were feeling tired and unusually bloated after eating. Turned out she has lobular breast cancer in her ovaries, uterus, abdomen, and the top of her vagina. One can have little or no activity in the breast and cancer in the lymph nodes, just as one can have a larger tumor in the breast and no lymph node involvement. Additionally, aggressive breast cancers may grow in between regular screenings, with no symptoms, lumps, or other indications that something is wrong. There is no formula, so my goal for you tonight, this month, and all year as a matter of fact, is to change what we think of as “awareness.” There is no cure until metastasis is cured or prevented. The way to end breast cancer is by giving to metastatic breast cancer research, and research in search of more genetic mutations and the targeted therapies to treat them. The way to end breast cancer is by demanding more federal funding be given to research into metastases. In July the House passed a bill to increase funding for breast cancer research. Current estimates are that 7% of cancer research dollars actually fund all metastatic cancer research. 2.5% goes to metastatic breast cancer, which is more than any other metastatic cancer. But really, what this tells us is all of us metastatic patients are thought to be beyond the point of help in prolonging life, developing less brutal treatments, and unlocking the mystery of why metastasis happens and thereby being able to ACTUALLY prevent or to stop it.
5. Young women do not get breast cancer
Regular mammograms are now indicated for women starting at age 50. While breast cancer is still statistically rare in women under 40, the number is growing and this population is more likely to be initially diagnosed with stage IV, partly due to the difficulty of having symptoms taken seriously at a young age, and partly due to young women being diagnosed with more aggressive cancers. Addtionally, younger women’s breasts are more dense, meaning mammography is limited as to what can be seen. My involuntary foray into this world has introduced me to countless young, vibrant women with stage 4 breast cancer in their 40s, many in their 30s, and even 20s.
6. Annual mammograms protect women from dying of breast cancer
Yes. Annual mammograms can detect cancer. But a patient can do everything right and still die of breast cancer. 20% of breast cancers are difficult to detect via mammogram and are much more likely to be diagnosed at an advanced stage. A patient can be diagnosed with early stage breast cancer and his or her cancer can metastasize. NO ONE KNOWS WHY. Yet. A metastatic breast cancer researcher at Fred Hutchinson Cancer Research Center in Seattle, has received a $4.1 million Department of Defense Breast Cancer Research Program to study how microenvironments within distant tissues influence dormancy, drug resistance and the re-emergence of disseminated tumor cells. He will use the funds to research ways to prevent breast cancer metastasis by treating dormant disseminated tumor cells. This research will directly address cause. Not the cause of breast cancer, but the cause of metastasis. This is what we need. Now. Not more awareness.
7. Buying pink products and race registrations help the cause of ending breast cancer
There is little data on where the money goes from all of the pink items and events purchased. Like a lot of our economy it’s kind of about stuff that people will buy and making a buck. And there are a lot of “breast cancer charities” on charity watchlists as BAD. They are NOT equal in intent, mission, or integrity. As you can infer from some of the statistics cited, much of this money is not going to “the cure.” I recommend that if you cannot resist registering for a race for the cure, or buying a pink key chain at a hospital gift shop, that you ask what charity this supports and how much money from your purchase might be going to research for a cure. Susan G. Komen’s new CEO has dedicated 50% of research funds to mets. However, the organizations administrative costs are huge, followed by awareness and education, and then research. Nancy Brinker’s salary in 2012 was 684,000 dollars. Don’t get me wrong. I support organizations that provide services and supports to breast cancer patients. Living Beyond Breast Cancer is an amazing organization that provides information and education (legitimate), support (help lines and conferences where people can connect), and advocacy for various specific populations like young women and metastatic patients. What they don’t do is market themselves as “for the cure.” It is not in their mission to raise funds for scientific research. I have had much support from this group. Komen on the other hand, is not an organization dedicated to finding a cure. They do provide some great services as well. Travel grants to conferences. Gas cards for traveling long distance for treatment. I’ve been the beneficiary of these. But we all need to pick our charities based on what we support doing and what the organization is actually doing. Metavivor is entirely volunteer-run and every dollar raised goes to metastatic breast cancer research grants. Clean and simple.
8. That there is such thing as breast cancer “prevention”
We can and should do everything we can to stay healthy. We should eat well, with minimal processed foods and lots of fresh vegetables. We should exercise. I considered myself a pretty darn healthy person both before and after my initial diagnosis in 2012. My diet, while not perfect, was and remains pretty darn good. I eat from our garden. We make our food from scratch. Prior to my diagnosis I was a triathlete. I’ve run a marathon, half marathons, swam obsessively. In other words, I partook in what we can do to prevent disease in our bodies. And here I stand, before you.
9. That breast cancer is one disease.
I can’t say it better than Gayle Sulik so I’m going to tell you what she said.
The greatest myth serving the early detection belief system is that breast cancer is a single, homogeneous disease that always behaves in the same way, progressing from early to late to lethal (stage 0, 1, 2, 3, 4). From this linear perspective, catching breast cancer "early" suggests that the cancer can be nipped in the bud, stopped in its tracks, prevented from progressing to a lethal stage. A cancer stage, however, is not a point in a definite progression. Staging provides a snapshot of some of a cancer's characteristics (such as size, extent, and how much the cells differ from normal cells) at a single point in time.
It is an important piece, but not the only piece, of a complicated puzzle.
The linear progression model does not take into account the complex biology of breast cancer. Researchers have identified at least ten different breast cancer types with unique characteristics, and they don't always behave the same way.
Rather than telling the public about the complexity of breast cancer biology, differences in treatment outcomes based on that biology, and the risks, benefits, and limitations of screening technologies, the public keeps hearing the drum beat of early detection, saved lives, and how a breast cancer diagnosis brings out the best in people. Amy Robach's (of Good Morning America) story is no different. She wants to believe that a mammogram saved her life. Let's say for the sake of argument that Amy Robach turns out to be right. She is treated for breast cancer and lives out a normal life expectancy for a white woman of her age, an average of about 80 years
If this is the case, then we could indeed call Ms. Robach lucky. Not lucky that her producer persuaded her to have that on-air mammogram in 2013. But that she happened to have one of those types of breast cancer with the particular biology that responded to treatment. Many women and men are not so lucky.
As esteemed metastasis researcher Dan Welch, PhD, emphasized: "To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body."
There can be no prevention of or cure for breast cancer until we know its cause. We cannot know its cause until we know why the up to 30% of patients whose cancer metastatizes does so, be it initially, months, years, or decades after it is diagnosed. We cannot learn this without direct and substantial funds, both public and private, dedicated to research on metastasis. And we cannot expect this funding to happen until we force the conversation about breast cancer to change, one October, one person, one community, one government at a time.
The moral of the story is that we need research funding. Here are four organizations that fund metastatic breast cancer research and I would love you to give your October donations to them instead of buying a pink ribbon key chain, but in the great scheme of things it is not the bulk of what is needed. What is needed is federal scientific research funds and so I plead with you to contact our legislators at the federal level – Wyden, Merkely, and Bonamici – and tell them this is what is needed to treat and even to cure breast cancer, not more awareness campaigns. You can help by doing this now, as a new organization called METUP is dying in in Washington, DC on the 13th, as we will be dying in here at Astoria High School on the same day. AIDS activists changed the conversation in the 1980s, when 40,000 people a year in the U.S. were dying. Sound familiar? Well, now due to ACTUP’s radical actions, AIDS, with the right treatment regimen, can be a chronic, liveable disease. If not a cure in my sure to be shortened lifetime, that is what I want, and what all of us want. Speaking of the Astoria Die In it will take place at Astoria High School on October 13th at 5:00. It is the senior project of Libby DiBartolomeo. Come and support her effort to change the conversation around metastatic breast cancer.
We are on the cusp of great change in cancer treatment. Vaccines, immunotherapy, individualized treatment based on one’s genetic mutations. Researchers are beginning to realize that genetic mutations cross cancer types. For instance, patients with colon cancer, breast cancer, and melanoma might share genetic mutations for which targeted treatments could cross cancer types. These studies, termed basket studies, are at the beginning stages. Fred Hutchinson researchers are looking at what makes dormant cancer cells on organs activate, and how to deactivate or kill them. If they succeed we might just have a cure. What is needed? Increased scientific research funding at the federal level. (chorus) We also need treatments that are less toxic and allow us, while we live, to live as normally and healthfully as we can. I know a lot of metastatic breast cancer patients. They are moms, some dads, a 37 year old civil rights attorney and mom, a 40-something medical physicist, a cancer care social worker, a 34 year old AIDS social worker, nurses, doctors, former booksellers, daughters, spouses, friends, active community members. Let’s change the conversation. Now would be the perfect time.