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Practicing Restraint In A No-Empathy Zone: At The Cancer Surgeon’s Office With My Son

Cathy Corman
Guest Contributor

I carry a genetic mutation increasing my risk of developing breast and ovarian cancer. My children have a 50 percent chance of inheriting the mutation. My 22-year-old son recently noticed a breast lump and asked me to join him when he met with a surgical oncologist to be evaluated.

The surgeon performed a skillful physical exam but provided neither effective risk assessment nor empathetic counsel. Afterward, I sent an email to friends briefly explaining what had gone wrong during the appointment. “We want to know how you managed not to hit him,” they asked. I did it by practicing restraint: slowly counting backwards from 10 and taking very deep breaths.

Here’s my countdown:

10. I did not correct the icy-blue-eyed surgeon with steel-grey hair and steady hands — 50? 60? — when he dissuaded my son from pursuing genetic testing. The surgeon had shaken my son’s hand, looked him in the eye, and palpated my son’s slender, muscular chest, identifying the small lump under my son’s left nipple. A positive finding of a mutation, the surgeon said, adjusting the top of his surgical scrubs, could expose my son to discrimination in the workplace and in obtaining health insurance. That is, I did not say, “The scenario you describe is illegal in this country.” As of March 23, 2010, with the passage of the Patient Protection and Affordable Care Act (aka “Obamacare”), if anyone were to attempt to discriminate against this young man in the workplace or in the process of applying for health insurance because of a positive finding for a genetic mutation (a pre-existing condition), this person would be subject to a massive lawsuit.

Cathy Corman (Courtesy)

Cathy Corman (Courtesy)

9. When this surgeon used the word “anxiety” for the eighth time to a) describe my son and myself and b) provide his vision of a course of action, I did not refer this man to Leslie Jamison’s collection of essays, “The Empathy Exams.”  “Empathy,” writes Jamison, “isn’t just remembering to say that must really be hard — it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see…”

8.  I did not bring up this statistic: Though men make up only 1 percent of breast cancer diagnoses annually in the U.S., they may be up to 25 percent likelier than women to die from the disease, probably because of lack of awareness and late detection. Nor did I mention that generally male breast cancer presents with a detectable lump and is almost always linked to radiation exposure, unusually high levels of estrogen or a genetic mutation. Surely the surgeon knew these statistics? But my son did not. And I did not want to scare him.

7. I said nothing to this surgeon’s response to my son’s question, “But wouldn’t it be relevant to know if I carry the mutation?” His answer: No, you know you have a family history of breast cancer.

6. I said nothing when this surgeon dodged my son’s question: “If my grandfather didn’t have the mutation,” my son wanted to know, “wouldn’t he not have had breast cancer? And wouldn’t it be important for me to know if I carry the mutation, too, to assess my risk?” The surgeon’s reply: The only way you’ll know if you have cancer is to have the lump removed. The surgeon’s answer, while true, sidestepped the elephant in the room: whether my son carries a mutation elevating his risk of breast cancer.

5. When this surgeon ridiculed an actress whose name he could not remember for publicly disclosing her status as a mutation carrier and for undergoing prophylactic mastectomies, I offered him the actress’s name. Continue reading

Patient Empowerment: Why Angelina Jolie’s Menopause Matters

Angelina Jolie (Gage Skidmore/flickr)

Angelina Jolie (Gage Skidmore/flickr)

You’ve probably never linked Angelina Jolie Pitt and menopause in a single thought before.

But there they were, connected on the opinion page of The New York Times Tuesday: The actress and filmmaker whose fecund family life and sexy beauty seem to embody female fertility, and the hormonal changes that mark female fertility’s end.

Jolie Pitt, 39, explained in her piece that because she carries a genetic cancer mutation and a strong family history of fatal ovarian cancer, she decided to get preventative surgery — the removal of her fallopian tubes and ovaries — to reduce her cancer risk. (Jolie Pitt previously underwent a preventive double mastectomy to lower her risk of developing breast cancer.)

Due the recent surgery, she writes: “I am now in menopause. I will not be able to have any more children, and I expect some physical changes. But I feel at ease with whatever will come, not because I am strong but because this is a part of life. It is nothing to be feared.”

Needless to say, the Times piece has triggered a media storm of opinion (“Hollywood will finally have to start talking about menopause”) and praise (for her “eye-watering courage”), including a thoughtful medical discussion on Here & Now.

Here, an expert on sexual health after cancer weighs in. Sharon Bober, Ph.D. is the director of the Sexual Health Program at the Dana-Farber Cancer Institute and assistant professor of psychology in the Department of Psychiatry at Harvard Medical School. She writes about the need for more education and frank talk about how patients can have a healthy sexual life after cancer and cancer-related surgeries:

Angelina Jolie Pitt has issued a resounding call for women at high risk for hereditary breast/ovarian cancer to learn about their options, “take control” and make decisions to manage their cancer risk. Jolie carries a mutation and has strong family history of this lethal disease. Because there is no effective screening for ovarian cancer, she has decided to follow her doctors’ recommendation to remove her ovaries at the age of 39.

But, as Jolie Pitt explained in her New York Times editorial, this blunt instrument of cancer risk-reduction comes with a high cost: immediate surgery-induced menopause.

One of the primary reasons that many high risk women do not move ahead with the same recommendation to remove their ovaries is fear of menopause and worry about quality of life.

Young women are understandably distressed about losing their sex life, their sense of femininity and are worried about the impact of these changes on dating or relationships. Unfortunately, these fears often go unaddressed and women assume that profound side effects are part of the high cost they must pay for undergoing potentially life-saving surgery.

In fact, for both high-risk women contemplating risk-reducing surgery like Jolie, as well as for young women who have been treated for cancer, it has been shown that sexual health is one of the most common and distressing treatment-related concerns. And yet, women’s sexual health is rarely discussed in most treatment settings.

Jolie Pitt declares that knowledge is power and I agree. I believe strongly that all women should have the information and education needed to address the side effects of treatment-induced menopause including how to manage changes in sexual health. For example, Jolie’s decision to use a regimen of hormone replacement to manage the shift into menopause makes sense for her but it is not a course of action that would be recommended for women who previously had breast cancer. However, breast cancer survivors struggle with treatment-induced changes like vaginal dryness, atrophy and loss of libido.

I recently worked with a 40-year-old breast cancer survivor who had been having painful sex with for 4 years and had no idea that help was available. Her first comment was that because no one ever spoke about it, she assumed this problem was supposed to get better on its own and when things got worse, she concluded that nothing could be done. Continue reading

Not To Be Ignored: BRCA Genes And ‘Silent Killer’ Pancreatic Cancer

(Markus Schreiber/AP)

(Markus Schreiber/AP)

By Dr. Sharon Seibel and Dr. Mache Seibel
Guest Contributors

Angelina Jolie’s decision to undergo a prophylactic double mastectomy to limit her genetic risk for breast cancer demonstrated a lot of courage. It also demonstrates that genetic testing is a real part of disease prevention. But though the discussion she has prompted is helpful, it is not going far enough.

Although the “BRCA” type of gene she inherited is named for BReast CAncer, mutations in those genes also affect other organs, particularly the ovaries. Your lifetime risk for ovarian cancer increases from about 1.5% to Jolie’s estimated risk of about 50%.

But nobody is talking about the increased risk of other cancers that BRCA mutations cause, such as the “silent killer,” pancreatic cancer.

They should. Sharon, who is BRCA2-positive, was diagnosed with it a year ago, and we believe more BRCA-positive women can — and should — be screened for pancreatic cancer.

This differing opinion means many women are not being given the option to be screened for a silent killer.

Sharon has a strong family history for ovarian cancer: Her great grandmother, grandmother and aunt died young from it. Sharon grew up with the belief that she would suffer a similar fate.

Until she read an article over ten years ago discussing the BRCA1 and 2 genes. It was the first study reporting that women with BRCA1 and BRCA2 genes could reduce their risk of breast and ovary cancer by 75% by having their tubes and ovaries removed. We arranged for genetic testing, and Sharon tested positive for BRCA2.

While the positive results brought on a sinking feeling initially, relief followed, because there was something that could be done to potentially alter destiny and avoid ovarian cancer. A month later, Sharon underwent surgery to have her tubes and ovaries removed. Continue reading

Angelina Jolie’s Double Mastectomy: How Times Have Changed

(Alastair Grant/AP)

(Alastair Grant/AP)

About five years ago a close friend of mine had a prophylactic double mastectomy to lower her extremely high genetic risk of developing breast cancer, which had killed her mother. She begged me to keep the operations a secret: she didn’t want to worry her two young daughters.

Today, in a New York Times opinion piece that is about as out-there and open as it gets, 37-year-old actress and activist Angelina Jolie, who carries the BRCA1 gene which greatly elevates her risk of breast and ovarian cancer, writes that she recently had her breasts surgically removed to lower that risk.

On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.

Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.

Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.

Jolie’s mother died of cancer at age 56 and Jolie writes that she didn’t want to put her own kids through that kind of pain if possible. That this highly public figure offers such intimate details about her body and her breasts may be a sign that the taboos around cancer are dwindling. (“On a personal note,” Jolie writes, “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.”)

Sharon Bober, a clinical psychologist and director of the Dana-Farber Cancer Institute’s Sexual Health Program, who counsels many women who have had similar surgeries, said in an email that Jolie’s honesty is truly refreshing:

Wow!

One thing that strikes me is how times have changed – not that many years ago BRCA carriers would be worried about insurance being dropped, stigma, judgement, (“you are removing healthy breasts?? What are you crazy??”) and now this too is out of the closet. Continue reading

Opinion: Why Our Genes Should Not Be Patented

Catherine Corman and her father are both BRCA carriers. (Courtesy of Catherine Corman)

Catherine Corman and her father are both BRCA carriers. (Courtesy of Catherine Corman)

By Cathy Corman
Guest Blogger

My father had a radical mastectomy in 1975.

He’d visited a general surgeon to check an eraser-sized lump he’d noticed in his left “breast,” which turned out to be malignant. Researchers in the 1980s pinpointed two kinds of genetic mutations that dramatically increase the odds of developing breast and ovarian cancer. They named these mutations BRCA 1 and 2.

By 1996, Myriad Genetics, a company in Utah, was offering a test that could identify people with BRCA mutations. I strong-armed my father into taking the test and held my breath as we waited for results. We learned that we are both BRCA carriers. For my dad, the result was retrospectively predictive. He had the mutation and developed breast cancer. For me, a healthy 37-year-old mother of young triplets, the implications weren’t so clear. I weighed my options and rolled the dice. By the fall of 1998, I’d had elective surgery to remove my thus-far cancer-free breasts and ovaries.

Along with the rest of the nation, I was on pins and needles last week listening to arguments in front of the Supreme Court about the constitutionality of “Obamacare.” I was also holding my breath, waiting for the decision the justices delivered last week concerning a challenge to Myriad’s monopoly on BRCA DNA and BRCA testing. Researchers, geneticists, and the American Civil Liberties Union asked justices on the Supreme Court to reconsider an appellate court’s ruling that upheld Myriad’s patent of the genetic material. The justices sent the case back to the appellate court and asked it to revisit its decision in light of a related case. This might bring good news or bad for those of us carrying BRCA mutations, but, in any case, the implications of the decision will reach far beyond the small number of us genetically predisposed to reproductive cancers.

Families with histories of any number of inherited diseases — from heart failure to diabetes to mental illness to autoimmune disorders – will increasingly share their DNA with researchers looking for genetic clues. If companies can patent our DNA as Myriad has done, they can, under current law, prevent us from receiving affordable testing and innovative, effective treatments for diseases that have the potential to take our lives. Continue reading