ovarian cancer

RECENT POSTS

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

Questioning Ovarian Cancer: Why Such A High Fatality Rate?

Photo Credit: Wikimedia Commons

Photo Credit: Wikimedia Commons

There is tragic news coming from the entertainment world today.  Pierce Brosnan announced that his daughter, Charlotte, age 41, died of ovarian cancer three days ago.  This is the same illness that took her mother’s life in 1991 when she, like her daughter, was in her early 40s.

Angelina Jolie – who underwent a preventative double mastectomy earlier this year —  lost her mother to ovarian cancer in 2007.

According to the CDC, ovarian cancer is the second most common gynecological cancer, after uterine cancer, and it’s the cause of more deaths than any other gynecological cancer.

The numbers look like this: ovarian cancer kills 15,000 women and approximately 22,000 new cases are diagnosed annually in the US.  Approximately 90% of cases occur in women over 40 and the majority of diagnoses are given to women aged 60 years or older.   According the the American Cancer society, the survival rate for patients who live for five years after they are diagnosed with ovarian cancer is 44%.

Unlike breast or cervical cancer, there is no reliable screening measure for ovarian cancer.  Once it is detected, the first line treatment option is surgery.

Earlier this year, The New York Times reported on a study that suggested the high fatality rate amongst ovarian cancer patients is attributable to widespread deficiencies in the typical treatment most women receive. The article reports that only a third of women with ovarian cancer receive “best practice” treatment, which the study says, is a complicated and intensive operation performed by a highly specialized surgeon.

Here is an excerpt from the article:

Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.

If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” Continue reading

Seeking Good News About Ovarian Cancer

(National Cancer Institute)

(National Cancer Institute)

Ovarian cancer is scary to begin with — hard to detect early and often fatal. It’s the worst-case scenario I imagine most often during any pelvic or abdominal weirdness. And last week brought word of disturbing findings, summed up in The New York Times as “widespread failure among doctors to follow clinical guidelines for treating ovarian cancer, which kills 15,000 women a year in this country.”

The study found that among women with advanced ovarian cancer, just 25% of those who received substandard care survived five years, compared to 35% of the women whose care conformed with the guidelines.

The Boston Globe’s Deb Kotz runs through the major points of the findings here, but for a couple of lingering questions I spoke with Dr. Ursula Matulonis, an expert on ovarian cancer at the Dana-Farber Cancer Institute. Our conversation, lightly edited:

CG: Through no marketing effort of its own, Dana-Farber has just gotten the best imaginable advertising for the sort of specialized cancer center it represents. But not everyone can be treated at Dana-Farber and Sloan-Kettering. Can we not advocate for ourselves or patients we love elsewhere?

Dr. Matulonis: I would say access to a comprehensive cancer center is exactly what you need. You don’t have to have all the care here, but you do need entry into a system where you have the expertise. That runs from the surgeon you see for advanced ovarian cancer, who makes the judgment, ‘Can I do up-front site reductive surgery at this moment or does this patient need chemotherapy first?’

What’s promising about ovarian cancer is that it’s getting the attention that breast cancer has been receiving for the past two decades

Post-surgery, pathology expertise is important. And then, obviously, the medical oncologist, that’s where I come in: ‘Are the chemo doses appropriate? Is the patient getting intraperitoneal chemotherapy or is that not the right treatment?’ That actually is very important and all patients with advanced ovarian cancer should have it as long as all visible cancer or close to it has been removed, because the study shows that if you don’t get that, your survival is worse. So that’s important.

I think women with ovarian cancer need to be advocates for themselves, and the problem is that the diagnosis can happen so quickly. Women need to understand what the symptoms are, and if they really do think they have ovarian cancer, they need to see specialists who deal with it every single day, because that can have an impact on their survival. It’s such a simple thing, access to care, but so important. Even if the cancer is not advanced, that’s important.

So does this study highlight a growing disparity between ‘have’ and ‘have not’ cancer treatment? I’ve been wondering if such gaps will grow as cancer care advances in its use of fancy genomic technology, analyzing the genes of various tumors and matching treatments to those genes… Continue reading

Continuing The Conversation About ‘Outside In’ And Stories of Illness

CommonHealth's first meetup, a screening of "Outside In" and panel

We’re happy to report that our first CommonHealth meetup last night, featuring a screening of the provocative film “Outside In” about one woman’s extraordinary journey through ovarian cancer treatment, was a rip-roaring success. The WBUR conference room was packed, the audience’s questions were thoughtful and the panel discussion was heartfelt and robust.

But as folks filtered out of the room, many approached us with more questions. So we’re hoping to keep the conversation going here. You keep asking or commenting below, and we’ll also seek responses from our panelists: the film’s star, Dr. Kasia Clark; its director, Kat Tatlock; Jonathan Adler, a psychologist and assistant professor at Olin College of Engineering; and Marie Colantoni Pechet, a CommonHealth contributor who writes about managing her stage IV colorectal cancer.

Some initial questions:

Money

Both Kasia and Marie talked about some of the travel they’ve done as ways to feel less like patients, more like normal people and as a means to “live in the moment” with friends and family. These trips include visits to waterfalls in Costa Rica, ski slopes in Utah, and contemplation of jaunts to Italy and Thailand. Clearly, the adventures cost money. One audience member wondered: What about all the regular people facing cancer with far less disposable income?

‘Fighting’

When an audience member suggested that Marie was surviving cancer because she had “such a will to live” and was “such a fighter,” that was offensive to at least one other audience member, and probably others who have lost loved ones to cancer. The implication, it seemed, was that others don’t have a strong enough will to live or didn’t fight hard enough. The whole “fight” metaphor is controversial among people with cancer. Could Kasia and Marie please respond? Continue reading