Tag Archives: inflammatory breast cancer

Our Feel-Good War on Breast Cancer: Who Will Listen?

Patrick Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated Press; U.S. Postal Service, via Associated Press.

Peggy Orenstein’s NYT Magazine article,  “Our Feel-Good War on Breast Cancer,”  is generating a lot of commentary on Twitter and various message boards.I summarized the article and offered some commentary on the MBCN blog. But I still have a few more things to say.

As Orenstein’s article demonstrates, breast cancer is complex disease. Here are some quick thoughts about breast cancer and screening:

I’m grateful the New York Times provided Orenstein with a platform to tell her story. The article’s run length is both intimidating (about 6,500 words) and frankly amazing (with today’s anemic ad revenues most journalists are routinely expected to perform the print equivalent of inscribing The Lord’s Prayer on a grain of rice).

It bothers me, however, that many of the messages in Orenstein’s aren’t new. They have  just never attained the same level of discussion. Consider Musa Mayer’s 2011 NBCC presentation “Theories of Metastasis“:

Mayer wondered why very few advocates focus on MBC. She offered the following theories:

  • Avoidance: Vast majority of advocates are primary breast cancer survivors at risk of recurrence: “We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”
  • Expertise required: Lack of knowledge about complex MBC treatments and the different issues that women with MBC face
  • Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing
  • Screening and early detection still a primary focus
  • Naïvete and fatalism both play a role
Musa's Mayers "Theories on Metastasis: Innovative Thinking, An Advocacy Perspective" can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Musa’s Mayers “Theories on Metastasis: Innovative
Thinking, An Advocacy Perspective” can be downloaded at http://advancedbc.org/file/Mayer_NBCC_2011_0.pdf

Dr. Gilbert Welch’s 2012 NTY Op-Ed piece, “Cancer Survivor or Victim of Over Diagnosis”  also covers much of the same ground as Orenstein’s 2013 article, and, indeed, Welch is prominently featured in Orenstein’s article.

Welch’s article ran on November 21, 2012. Did you read it? Did you share it on Facebook and Twitter? I know I didn’t. Yet when Orenstein reiterates many of Welch’s points lo these five months later, suddenly this same information is more compelling.

One of Orenstein’s central tenets is that early detection is not a breast cancer cure. That’s been said before here, here and here and I’m sure countless other places. In my own writing, I have frequently cited The National Breast Cancer Coalition’s 31 Myth and Truths.  Here is an excerpt from NBCC’s Myth #2:

…evidence shows that in the United States, it has been estimated that a woman’s cumulative risk for a false-positive result after ten mammograms is almost 50 percent; the risk of undergoing an unnecessary biopsy is almost 20 percent. In addition, women who are screened with mammography often have more aggressive and unneeded treatments. It is estimated that mammography screening has increased the number of mastectomies by 20 percent and the number of mastectomies and lumpectomies combined by 30 percent.

Women are regularly told that screening mammograms save lives. 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.

It’s also instructive to note what this 2009  NYT Op-Ed piece said:

Screening turns up lots of tiny abnormalities that are either not cancer or are slow-growing cancers that would never progress to the point of killing a woman and might not even become known to her…The scientific argument is that it is not worth taking such risks for the large number of women whose cancers grow too slowly to kill them. But it is difficult, in practice, to apply that kind of scientific analysis to the immediate questions confronting a woman and her doctor when a mammogram turns up an abnormality. The only real solution will come when researchers find a way to distinguish the dangerous, aggressive tumors that need to be excised from the more languorous ones that do not.

If you’ve read Orenstein’s current article, that last part will certainly sound familiar.

Orenstein’s 2013 article reminds us  that metastatic breast cancer research receives scant funding, noting that “only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis.”

That point previously was made in Roni Caryn Rabin’s 2011 NYT story: “A Pink Ribbon Race Years Long”:

Since it is metastasis that ultimately kills, some advocates want more resources devoted to its study and treatment. Even though many cancer drugs are initially tested on patients with advanced disease, Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process. “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget,” said Dr. Welch…

And Mayer, in her 2011 presentation says the same thing. She offers a pie chart from Science Daily, as well as this pull quote:

“Although there is considerable variation, the median spent on metastasis research is around 5% of total cancer research funding. Is this sufficient?” Jonathan Sleeman, Patricia S. Steeg, “Cancer metastasis as a therapeutic target,” European Journal of Cancer 46 ( 2010) 1177–1180 (free full text).

To paraphrase Yogi Berra, it’s deja vu all over again, isn’t it? Well, perhaps if we say it  loud enough and long enough people will start listening.

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Informative Inflammatory Breast Cancer Article from MD Anderson

My mother was diagnosed with inflammatory breast cancer (IBC) in 1981. IBC accounts for between 1 to 5 percent of all U.S. breast cancer cases–NIH classifies it as a rare disease. Although some small progress has been made since my mother died almost 30 years ago, it remains the most aggressive type of breast cancer.

It is estimated that between 1% and 5% of all newly diagnosed breast cancers each year present as IBC; because of its rarity, it is listed with the Office of Rare Diseases at the National Institutes of Health.[1] While the number of cases of IBC is relatively small compared with the overall number of breast cancers, it is still a substantial number compared with many other rare tumor types…We cannot use the small number of cases as an excuse for the lack of clinical trials; rather, we should view it as a mandate for making novel treatment strategies available to all patients with this diagnosis.

via Have We Made Progress in Inflammatory Breast Cancer? Not So Fast – Cancer Network.

IBC patients’ median ages range between 45 and 55 years old. It occurs more frequently and at a younger age in African Americans vs. Caucasians. (See Inflammatory Breast Cancer Foundation – What is IBC? as well as IBC Support.)

Dr. Naoto Ueno alerted me to this recent IBC article. Because we tend to read very little about this type of breast cancer, I wanted to share it.  Some key point follow.

Inflammatory Breast Cancer: Clinical Challenge, Research Enigma

By Sunita Patterson

Inflammatory breast cancer (IBC) stands apart from other cancers of the breast in its unusual clinical presentation, its aggressiveness, and its poor prognosis. Researchers and clinicians are working to clarify what distinguishes IBC from other breast cancers and to discover treatments that improve patient outcomes.

Although IBC accounts for only 2%–5% of breast cancers, it is responsible for 8%–10% of breast cancer–related deaths. “IBC has a strong tendency to metastasize. In fact, a third of patients have metastases at diagnosis,” said Naoto T. Ueno, M.D., Ph.D., a professor in the Department of Breast Medical Oncology and executive director of the Morgan Welch Inflammatory Breast Cancer Research Program and Clinic at The University of Texas MD Anderson Cancer Center. The IBC program at MD Anderson was the first clinic in the world devoted to IBC and is the largest today, treating about 100 patients each year.

Symptoms and diagnosis

Because IBC is rare and its symptoms differ from those of more typical breast cancers, misdiagnosis and less-than-optimal treatment are common, both of which diminish survival outcomes.

The first challenge that IBC presents clinicians is that it does not look like a typical breast cancer. It often appears to be and is misdiagnosed as an infection or a rash. The primary symptoms are usually rapid breast enlargement and erythema covering most of the breast; there may not be any lump.

For most patients with breast irritation and redness, mastitis is the problem, and an antibiotic will help. However, according to Dr. Ueno, if there is no response to the antibiotic in 1–2 weeks and the breast remains red, the physician should suspect IBC and order a biopsy right away. “We don’t want to waste a lot of time with this disease,” Dr. Ueno said, “because it increases the chance of metastasis.”

Both a core needle biopsy and a punch biopsy of the skin should be done. When there is no clearly defined mass, Dr. Ueno recommends directing the needle where the most swelling and redness exist. In patients with IBC, the skin specimen will often show extensive dermal lymphatic invasion. However, in the presence of persistent symptoms, negative biopsies do not rule out cancer completely.

Along with the biopsies, the patient should undergo mammography. If the results are negative, magnetic resonance imaging and ultrasonography should be considered.


“Many community physicians will just see one case of IBC in their entire practice,” Dr. Ueno said. For this reason, he strongly recommends that patients with IBC be referred to a clinic specializing in IBC treatment. “These patients need a specific workup and a multidisciplinary care team,” he said.

The MD Anderson IBC clinic usually sees patients within 48 hours of their referral or self-referral. Typically, patients initially come to MD Anderson for 10–14 days of testing and meeting with medical, surgical, and radiation oncologists. The workup consists of repeat breast imaging (mammography, magnetic resonance imaging, and ultrasonography), remapping of the lymph nodes, blood tests, a pathologic review, and sometimes a positron emission tomography–computed tomography scan or a computed tomography scan with a bone scan.

Treatment of nonmetastatic IBC differs from that of other breast cancers in that systemic therapy is given preoperatively to debulk the disease as much as possible. Surgery and radiation therapy follow. Because treatment usually begins with chemotherapy, a medical oncologist is usually consulted first. But Dr. Ueno recommends that surgical and radiation oncologists with expertise in IBC also be involved from the beginning. “The optimal extent of local treatment can be difficult to judge when there isn’t a clear mass and the redness is diffuse,” he said, adding that coordinated care by an experienced team can reduce the possibility of errors.

[snip……Read article in its entirety here….]

Dr. Ueno is passionate about the need to study IBC even though it’s “rare.” “People keep asking, why are we investing so much effort in an ‘orphan’ disease?” he said. “It’s true that IBC is rare in terms of incidence. But from the mortality perspective, IBC isn’t rare. It’s a killer.”

For more information, call Dr. Naoto Ueno at 713-792-8754.


Dr. Naoto Ueno recently co-edited a textbook about IBC treatment and research: Inflammatory Breast Cancer: An Update (Ueno NT, Cristofanilli M, eds.). Springer, 2012.

The MD Anderson IBC program hosts a Web page, Facebook page, and Twitter account with research updates and patient information:

Dr. Ueno posts information for patients, clinicians, and researchers on Facebook and Twitter:

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Stuff People Say to People With Metastatic Breast Cancer

Pundit Molly Ivins died of inflammatory breast cancer at age 62 in 2007.

“One of the first things you notice is that people treat you differently when they know you have [breast cancer],” she wrote. “The hushed tone in which they inquire, “How are you?” is unnerving. If I had answered honestly during 90% of the nine months I spent in treatment, I would have said, ‘If it weren’t for being constipated, I’d be fine.'”

In a similar vein, actress, writer and early stage breast cancer survivor Jenny Saldana recently teamed with Linda Nieves-Powell to create “Sh*t Girls Say to Girls With Breast Cancer.” It’s funny because it’s true…if you have breast cancer, you will have heard at least one of these clueless comments. That being said, I am sure that prior to my own diagnosis I made some of these same comments to others. Well, as Dear Abby used to say, 40 lashes with a wet noodle.

I should stress that in talking to other cancer patients, a spirit of tolerance and understanding  prevails. It’s not easy to know what to say and in most cases, the responses are truly heartfelt if often unintentionally hilarious.

Saldana and Nieves-Powell show great comic skill and creativity in this clip. As in similarly titled efforts, the actress is shown in various settings (getting something from the fridge, at the wheel of her car,) as she recites comments  such as “You’ll be fine,” and “It’s because you don’t have children.”

Don’t be put off by the title. It’s just a play on “Sh*t My Dad Says,” there is no cussing–it’s very funny!

I hope they will consider doing a similar piece specifically for people with metastatic breast cancer. My suggestions would include:

  • Well, you never know. You could get hit by a bus.
  • They don’t seem to be doing much for you.
  • Sheryl Crowe says it’s from drinking out of plastic water bottles, especially if they have been sitting in the sun.
  • Have you tried mistletoe?
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Why Are You Doing This?

My mom had inflammatory breast cancer. She died in 1983.

The other night I participated in a free WEGO Health webinar: “Navigating Your Health Narrative.” Lisa Emrich, (MS and RA); and Jenni Prokopy, fibromyalgia; and WEGO’s Amanda Dolan offered tips for better health blogging. One basic question any health blogger should ask is “Why am I doing this?”

To paraphrase George Mallory: Because I am here.

Recently a schoolmate posted our first grade class portrait on Facebook. As I studied the faces, distant memories drifted back: Tom’s theft of my Husky red pencil; Scott’s thwarted attempt to cheat on a test and Fred’s pre-luncheon ritual of sitting on his daily baloney sandwich prior to unwrapping it.

What would they remember about me? Probably that I seldom spoke. I was very shy, a situation compounded by being one of three children born in the same year. (I have a twin brother and one who is not quite a year older.)

I used to have a defaced picture of The Haymarket Riot from my sister’s history book. Her friend replaced “Haymarket Riot” with “The O’Brien Family at Dinner Time.” It wasn’t far off the mark. Dinners at our house were raucous gatherings, with everyone competing for their share of attention and food. (Not necessarily in that order.)

Since two of my five brothers were in my class, I had no school news to impart–they always beat me to it. Most of the time I just enjoyed listening to everyone else. I was in awe of my older brothers and my sister. They were bigger, smarter and burdened with the task of setting good examples.

As a World War II and Korean vet, my father was old school all the way. In the early 1970s, hippies were still commonplace. So we heard a lot of anti-mope rants. (“Mope,” “dolt” and “chowderhead” formed my father’s great triumvirate of insults.)

Occasionally, my father would solicit my opinion. Inevitably, my twin, Kevin, would respond for me. “Do you mind?” my father would say, shushing him and signaling for general silence. “I am attempting to talk to your sister. Now, what do you have to say, Kathy?”

I was embarrassed to be singled out. I spoke softly and briefly. At school this often prompted the teacher to say: “Class, could anyone hear that? I didn’t think so. Now let’s hear that again, Kathy, and this time speak up.”

I was quiet like my mother but certainly not as self-effacing. If I was modest it was only because I was too timid to toot my own horn. In spirit, if not in deed, I was like my father–a bit of an intellectual show-off.

“It amused her that our ways were quite opposite,” my father wrote shortly after my mother died. “When I did [something] it would be followed by a detailed commentary on the difficulties of the task and the discomforts I had endured and the magnitude of what I had accomplished and its lasting value.”

If my father painted the back door he would tell my mother it would probably cause an immediate rise in neighborhood property values and make the door itself a place of pilgrimage for connoisseurs of well-painted doors who would come from afar to admire the genius of its brushwork.

“At such times the fond patient eye would fall upon me with a satirical look,” my father recalled. “Puffing out her cheeks to simulate the contours of the Irish face as it pleased her to display them, she would frown importantly and march up and down pointing to herself. My venture into pomposity and egotism would end, like so many of its predecessors, in delighted laughter.”

My mother was diagnosed with inflammatory breast cancer (IBC) in 1981. IBC accounts for between 1 to 5 percent of all U.S. breast cancer cases–NIH classifies it as a rare disease. Although some small progress has been made since my mother died almost 30 years ago, it remains the most aggressive type of breast cancer.

It is estimated that between 1% and 5% of all newly diagnosed breast cancers each year present as IBC; because of its rarity, it is listed with the Office of Rare Diseases at the National Institutes of Health.[1] While the number of cases of IBC is relatively small compared with the overall number of breast cancers, it is still a substantial number compared with many other rare tumor types…We cannot use the small number of cases as an excuse for the lack of clinical trials; rather, we should view it as a mandate for making novel treatment strategies available to all patients with this diagnosis.

via Have We Made Progress in Inflammatory Breast Cancer? Not So Fast – Cancer Network.

IBC patients’ median ages range between 45 and 55 years old. It occurs more frequently and at a younger age in African Americans vs. Caucasians. (See Inflammatory Breast Cancer Foundation – What is IBC? as well as IBC Support.)

I was 15 when my mother was diagnosed with IBC. Unlike other breast cancers, IBC typically does not present with a lump. The breast often looks swollen or red, a change that sometimes can happen overnight.

My mother’s treatment began with a mastectomy in our community hospital. In hindsight, I don’t know why my mother didn’t go to a university hospital–I can’t believe her small town surgeon would have seen many cases of IBC or even garden variety breast cancer for that matter. My parents went to the Mayo Clinic for a consultation. No one in our family had cancer. We didn’t know anyone with cancer. If you had a serious health crisis, everyone knew the Mayo Clinic was THE place to go.

But even the Mayo Brothers were no match for a disease where the five-year median survival rate is approximately 40 percent today. (It was worse in the 1980s. Today, IBC has a three-year survival rate of 42 % vs. 85% for non-IBC disease.)

Although 3-year survival from IBC has improved from 32% in 1975-1979 to 42% in 1988-1992 from the use of combined treatment modalities, women with IBC still have far worse survival than those with other types of breast cancer (all stages and non-IBC histopathological types combined [had a] 3-year survival [of] 85% in 1988-1992)
Source: http://www.ibcresearch.org/research/

From the community hospital, my mother went on to Lake Forest Hospital for in-patient chemotherapy. My older siblings were away at college leaving only my father two brothers and me to visit my mother in Lake Forest and remark on the amenities offered in a rich person’s hospital. (Mothers recuperating from blessed events could order lobster and there was a grand piano by the flight of stairs that led to the maternity ward.)

I hated going to visit my mother there. The nurse’s station had stern notices warning visitors against sitting on vacant beds. As we walked down the hall we would sometimes hear retching or terrible groans emanating from other patients’ rooms.

Our travels also took us to Lutheran General and Northwestern. I can’t remember where my mom had radiation–maybe at Lutheran General. There was a nurse she really liked at Northwestern–a very friendly young woman.

My father went to some of my mom’s appointments, especially if she were trying something new or meeting a new doctor. But most of the time my mother, who didn’t drive, asked which ever child was with her to remain in the waiting room while she saw the doctor.

My family in August, 1975. Nulliparity obviously wasn't a problem.

Oncology regimens have improved dramatically since the early 1980s. In my recollection, my mom’s treatments were on par with Civil War battlefield amputations. I think she had a radical mastectomy–which is no longer done. Today’s anti-emetics didn’t exist–my mom would throw up for days when she was having chemo. Later, when she had radiation, her skin was broken and oozing and her back–either because it was burned or itching or both–was a constant torment.

When I went for radiation treatments last year, I was terrified. I remembered my mother’s agony, how she would beg us to rub her back and how we did it so often for so long that we eventually rubbed a huge hole in the old navy blue cardigan she used to wear.

Thankfully, I suffered no side effects from surgery, radiation or other treatment. (I don’t have IBC, I have run-of-the-mill ER/PR+ HER2 NEU- breast cancer with a low volume of bone mets.)

In those pre-Internet days, there was literally nothing for women with IBC or MBC. General breast cancer information was restricted to large libraries or a few pamphlets from the cancer circuit rider AKA an American Cancer Society volunteer.

“In the mid-1970s, breast cancer was perceived very differently than it is today,” writes Barron H. Lerner. “There was no National Breast Cancer Coalition or Race for the Cure that encouraged women to talk about, and raise funds to control, the disease. Indeed, it was only in 1974 that breast cancer came out of the closet, with the highly public diagnoses of First Lady Betty Ford and Happy Rockefeller, wife of vice-president-designate Nelson Rockefeller. “

In the early 1980s, breast cancer was not daytime television fodder. “Mastectomy” was not a topic Merv Griffin, Mike Douglas, Phil Donahue or Judge Wapner broached. But in the early 1980s, it seems we had a perfect storm of launch vehicles for breast cancer awareness: Susan G. Komen for the Cure was founded (1982); Lifetime TV went on the air (also in 1982); and Oprah made her nationwide debut (1986).

You know what need now? How a little less awareness and a whole lot more UNDERSTANDING? Most breast cancer stories in print and on television make Horatio Alger Jr. sound as subtle as James Joyce. With luck and pluck, the brave breast cancer heroine carries on and ultimately kicks cancer to the curb.

Those are good stories. But that’s not my story.

Last November, I attended a panel discussion called “Many Faces of Breast Cancer: Living with Advanced Breast Cancer,” one of a series of national events AstraZeneca sponsored.

Dr. Sandy Goldberg, a nutritionist and weekend health contributor to NBC Channel 5, moderated the discussion. She told us she had experienced “everything you saw on the tape” referring to an AstraZeneca video featuring three women with metastatic breast cancer.

This set off enraged whispers in my row. Dr. Goldberg seemingly had an early stage cancer discovered in 2000. She did a 14-part, local-Emmy winning series on her breast cancer in 2002. But she apparently does not have metastatic breast cancer. It’s not clear what treatment she had, but at any rate it would seem her treatment ended at least six years ago. In 2002 she launched the Silver Lining Foundation to provide resources to those uninsured and underinsured individuals, often women of color.

According to the foundation’s 990 form, Dr. Goldberg receives a salary of $73,750 or 27% of the net revenues; $96,000 or 36% is spent on mammograms. The rest is spent on other administrative costs like rent, professional fees, salaries and benefits for those other than Dr. Goldberg.

The next day, we saw a student journalist’s online report. “The attendees wore mostly pink,” according to the student. “Some stuck to understated pink handbags or pink ribbons pinned to their lapels, while others celebrated in head-to-toe pink ensembles. They swapped stories, hugs and tears until the expert panel took the stage for the evening’s conversation.”

I spoke to six MBC women before the event began. We were all wearing earth tones: brown, black and perhaps olive green. None of us had any pink accessories. No pink ribbon pins. No one in my group hugged or cried and I observed no such carrying on as I looked around the room. I did see one elderly lady wearing a track suit which may have had pink stripes.

We are women with an incurable disease. Nothing said at this meeting offered any great epiphany. Maybe people were excited about the free food, but I found nothing to celebrate and there were certainly no high fives or fist bumps being exchanged in my corner.

Why would the student write something if it wasn’t true? She probably did see a couple of friends hugging. But, perhaps more likely, people have an idea of what breast cancer and breast cancer patients should be. They don’t like to let reality get in the way of a warm and fuzzy story.

We thought the presentation was going to focus on MBC. It didn’t. We complained to the organizers in person and later in writing. We felt brushed off.

Last October, my local paper featured a breast cancer awareness advertising section. All of the women profiled belonged to the “Treat it and Beat it” sorority beloved of reporters writing about breast cancer.

There was not a single word about recurrence. And yet, until a woman dies
of something else, there is always the possibility her cancer can come back, even if she was successfully treated for an early stage cancer and even if she completed her treatment as long as 25 years ago.

The special section had no insights for MBC women. The only oblique mention of Stage IV concerned a golf tournament named after a woman who died. Beyond the time, place and funds raised, we learned nothing further.

The day after Elizabeth Edwards died, “Today” show host Matt Lauer and Dr. Nancy Snyderman, NBC chief medical editor, recapped Edward’s cancer experience. Noting that Edwards was diagnosed with Stage 3 breast cancer in 2004, Lauer asked Snyderman about Stage 3 survival rates.

At no time, during their discussion, did Lauer or Snyderman mention that Edwards entered the metastatic ranks in 2007 and, in fact, died from metastatic breast cancer, AKA Stage IV.

Snyderman made it sound as though Edwards somehow died of Stage 3 breast cancer.

As if to avoid alarming Stage 3 women, Snyderman warned them not to compare their situations to Edwards’. She offered no such comfort to Stage IV women.

As the interview concluded, the doctor stressed the importance of mammograms and early detection. She said that the real issue is that we are still trying to figure out what causes breast cancer.

No kidding.

As we’ve previously observed, women with MBC literally don’t count. Some estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.

“One hundred and sixty thousand is an estimate only,” author and advocate Musa Mayer told Elaine Schattner last year. “Nothing more definitive is available,” she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between — in terms of recurrence and the exact number of women living with metastatic breast cancer — is undocumented.

“It is as if these metastatic women are invisible, that they literally don’t count,” she indicated. “And when we don’t count people’s needs, we can’t provide or plan for them.”

Why I am doing this? Because I refuse to be invisible.

I will be seen and heard.

I will speak up and speak out.

I will make a difference.

Two of my nieces with their grandmother's high school self portrait.

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I Didn’t Realize O’Brien Was a Japanese Name…

The other day I finally did something about the Hobbit-like state of my feet. The pedicurist, perhaps to distract herself from the heavy lifting before her, was making small talk. Usually these conversations run along the lines of “Do you live nearby?” or “Did you know that most of Emily Dickinson’s poems can be sung to the tune of ‘The Yellow Rose of Texas?”’

So I was a little startled when the Asian woman looked up from her scrubbing and asked: “Are you Japanese?”

This isn’t the first time I’ve been asked that question. It must be my epicanthic folds.

“No,” I said. “I’m Irish. How about yourself?”

“I’m Vietnamese,” she said, laughing to think that anyone could  look at her and not immediately cotton on to this.

In the U.S., we hate to stereotype, but we love to categorize. We’re not being nosy or culturally insensitive, we’re just seeing if we know any of the same people. We are a young country–not too far removed from those 13 original colonies. So it’s possible that if my family lives in Chicago, a city of nearly three million people and your family lives 2046 miles away in Sacramento, well, we might have some mutual friends.

My name is an icebreaker. “Katherine O’Brien,” a new acquaintance will say, often lapsing into an Irish accent that  elevates Dick Van Dyke’s efforts in “Mary Poppins”  to  Meryl Streep’s level of prize winning  linguistic proficiency. “You must be Irish.”

I usually just say yes. But despite being a proud graduate of Santa Maria del Popolo grade school and Carmel Catholic High School, I’m technically Jewish. Just to be more confusing, my mother was technically and undeniably Jewish but a very good Catholic (seven kids in five years!).

I don’t know much about my  grandmother’s family, the Mays. My  Grandpa Isaac left Frankfort  for Ellis Island in 1907. He disembarked the Kaiserin Auguste Victoria with $20 and his Chicago uncle’s address. My mother grew up in Hyde Park. She graduated from the Art Institute and earned her master’s degree from Loyola. Before she met my father in Mexico and got married, she taught art at Mather High School.

All of which is why I just say “Yes,” when people say: “Katie O’Brien! You must be Irish.”

Matrilineality in Judaism is the view that people born of a Jewish mother are themselves Jewish. Given that my knowledge of Judaism is derived almost entirely from watching Robby Benson in “The Chosen” and reading the Holiday issue of “Highlights for Children,” I won’t attempt to explain this complex and controversial topic.

We are all sons and daughters of Abraham–it’s probably best to leave it at that. Unless you have just been diagnosed with breast cancer or have a family history of breast cancer.

People of Jewish descent have a higher risk for a genetic mutation which in turn carries a higher risk for breast and/or ovarian cancer. My mother  died of inflammatory breast cancer, further increasing my breast cancer risk.

Most cancer  just happens–it’s sporadic vs. heriditary. The majority of people who develop breast cancer didn’t inherit an abnormal breast cancer gene and have no family history. But about five percent of people have a genetic mutation which predisposes  them to cancer.

[Edited to incorporate ovarian cancer information. Thanks Casey!]

Two abnormal genes BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two) are associated with a higher lifetime risk of developing breast and/or ovarian cancer.

From the NCI FAQ: A woman who inherits a harmful mutation in BRCA1 or BRCA2 has an increased risk of developing breast and/or ovarian cancer at an early age (before menopause) and often has multiple, close family members who have been diagnosed with these diseases. Harmful BRCA1 mutations may also increase a woman’s risk of developing cervical, uterine, pancreatic, and colon cancer (1, 2). Harmful BRCA2 mutations may additionally increase the risk of pancreatic cancer, stomach cancer, gallbladder and bile duct cancer, and melanoma (3).

All of us have BRCA1 and BRCA2 genes according to  BreastCancer.org: ” The function of the BRCA genes is to repair cell damage and keep breast cells growing normally. But when these genes contain abnormalities or mutations that are passed from generation to generation, the genes don’t function normally and breast cancer risk increases. Abnormal BRCA1 and BRCA2 genes may account for up to 10% of all breast cancers, or 1 out of every 10 cases.”

Ashkenazi (Eastern European) Jews are 10 times more likely to have mutations in BRCA1 and BRCA 2 genes than the general population. Approximately 2.65 percent of the Ashkenazi Jewish population has a mutation in these genes, while only 0.2 percent of the general population carries these mutations.

Note that most U.S. Jews are  Ashkenazi (their ancestors came from Eastern Europe) vs. Sephardic  (their ancestors came from Spain, Portugal, North Africa and the Middle East).

Having an abnormal BRCA1 or BRCA2 gene doesn’t mean you will be diagnosed with breast cancer: Only seven percent of breast cancers in Ashkenazi women are caused by alterations in BRCA1 and BRCA2 (See www.genome.gov/10000507.)

When I was first diagnosed (but before my mets were discovered) I was meeting with a surgeon,  Dr. Patty O’Furniture.* It was the my first meeting with Dr. O’Furniture. She took my history and explained what would happen next: lots of tests. When she finished, she asked me if there was anything else I wanted to talk about. “Just one more thing,” I said. “I’m Jewish.”

“Oh,” said Dr. O’Furniture. “I thought– with your name…” She then ordered more tests.

BRCA testing showed I am not a carrier for this mutation. (Well, at least not for BRCA1 or BRCA2. Researchers are still stirring the genetic soup.)

Young Jewish women with breast cancer should check out Sharsheret . Founded in November 2001,  the group addresses the genetic risk of developing breast cancer in Jewish women of Ashkenazi descent, pregnancy after diagnosis, parenting, relationships and intimacy, the role of religion in daily life with cancer, and the impact of breast cancer on religious ritual and spirituality.

Shalom (and begorra)! (Not to mention sayonara!)

*Not her real name…

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