Gyn cancer, with an analogy to feminist politics (by Suzie)

      I missed the first National Gynecologic Cancer Awareness Symposium and Gala last Friday, and so, apparently, did the media.* Congress has mandated a public awareness campaign about gyn cancers, but the media will not be bossed.

     “You cannot make us write about women and cancer unless we can illustrate the story with a young, thin, naked, pretty white woman coyly covering her naughty bits while looking anywhere but into the camera,” the media yells from the ramparts.
     “Give me a celebrity or give me death … or better yet, a dead celebrity!” the media shouts. “Or, at least, an inspiring individual whose story we can tell without doing any real research.”
      I don’t mean to sound righteous. I didn’t care much about this topic until I got diagnosed with gyn sarcoma. When I went to Web sites on “women’s cancer” or “gyn cancer,” I found few included sarcoma.
      I know oodles of women with gyn sarcoma. We allegedly represent only a teeny-tiny fraction of gyn cancer, but some sarcoma doctors think sarcomas are undercounted. (For those interested in statistics: A lot of health-care professionals will use the diagnostic code for "uterine cancer," for example, when a woman has endometrial stromal sarcoma, carcinosarcoma or uterine leiomyosarcoma. Later, statisticians may translate "uterine carcer" into endometrial carcinoma, the most prevalent kind of uterine cancer.) 
       Last year, Bush signed Johanna’s Law: The Gynecologic Cancer Education and Awareness Act, which mandates a federal campaign to educate the public. In response, the Centers for Disease Control and Prevention launched Inside Knowledge: Get the Facts About Gynecologic Cancer. There’s no mention of sarcoma.
       More examples: On my behalf, friends donated to a program that funds research for "gynecologic cancer." But I found out nothing went to sarcoma research. At least the coordinators let me switch my friends' donations to sarcoma. The American Cancer Society focuses on major cancers, and has given little or no money to sarcoma research. The ACS doesn't mention that, of course, when seeking donations from sarcoma patients.

        I get angry at these exclusions and want to yell, “Ain’t I a Woman?” How can people address gyn cancer without mentioning women like me? Official information that excludes sarcoma makes it that much harder for women with sarcoma to get the proper medical treatment or find support. Women with other types of cancer don’t have to fight my battles, but if they speak about "women's cancers" or "gyn cancer," I wish they would acknowledge my existence.

        On the other hand, I realize there may be women with even rarer forms of cancer that I’m failing to acknowledge in my work. We can never speak for everyone.
         Even when advocates fail to mention sarcoma, their work may benefit sarcoma patients. For example, women with ovarian carcinoma have made it more acceptable to discuss gyn cancers in general. Techniques for genetic analysis of ovarian carcinoma are now being used to analyze sarcoma. Aromatase inhibitors given to breast-cancer patients now are given to some women with sarcoma, notably endometrial stromal sarcoma.
          Last month, I wrote about plans to attend the annual meeting of the Society of Gyn Oncologists. I stalked doctors with chocolate in one hand and brochures in the other. I was thrilled that some doctors sought information on sarcoma advocacy, including the director of Gynecologic Surgical Services for the National Cancer Institute, who invited the Sarcoma Alliance to attend the national awareness day. I hope to go next year.
          In the meantime, I’ll look for a thrift-store cocktail dress and figure out ways to work with other women.
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*If you saw an article, please let me know. I could find nothing on the Internet.

Rare cancer and women (by Suzie)

       Because I know how to have a good time, I’ll be spending a couple of days with more than a thousand gynecologic oncologists.
       At their national conference next week, I’ll be representing the Sarcoma Alliance, trying to lure doctors to my table with little bits of chocolate. I have pamphlets, wristbands and ribbons to foist on them.
       If you don’t have this rare cancer, why should you care? Because problems for women with sarcoma illustrate bigger issues in our health-care system. They expose a glitch in the system.
       When I was diagnosed with vaginal leiomyosarcoma in 2002, some cancer centers told women with gyn sarcoma that they had to see a gyn oncologist. They could not see a doctor in a sarcoma department. Let me restate that: Some women with sarcoma were not allowed to see sarcoma doctors. Hmmm, what’s wrong with that picture?
       In 2006, when I contacted the federal National Cancer Institute, two information specialists said I should see a gyn oncologist, not a doctor in sarcoma.

       The NCI and the private, nonprofit National Comprehensive Cancer Network separate gyn sarcoma from other types of soft-tissue sarcoma on their Web sites. After I asked about this in 2006, NCI linked the sites.
        The NCCN publishes guidelines for doctors. Oncologists who focus on sarcoma write the guidelines on soft-tissue sarcoma. Gyn oncologists write the guidelines for women with gyn sarcomas.
        As far as I know, no one in a sarcoma department has ever gone to the national gyn oncology conference. On next week’s agenda, I didn’t see any discussion of sarcoma. On the flip side, it is rare for someone in gyn to attend the international sarcoma conference. In two major NCI reports on gyn cancer and sarcoma, the doctors don’t mention each other.
         I wrote about this in 2006 here and here.

         I don’t mean to disparage doctors. I like and respect mine. I have no quarrel with a woman who decides that a gyn oncologist is best for her. I see a gyn oncologist as well as a medical oncologist in a sarcoma department. Other women should have the choice of seeing the former, the latter or both.

        I know the medical system could improve in many ways. But the situation with gyn sarcoma illustrates a couple of points: Patients need to know about options and have access to specialists. And doctors need to collaborate more on research and treatment.

What is ‘women’s oncology’? (by Suzie)

          A. Is it the treatment of cancers that occur only in women? (Some people may not know that breast cancer can arise in men. Others might cite gynecologic cancers, not thinking of transmen.)
         B. Does “women’s oncology” refer to cancers that occur predominantly in women?
         C. Is it the study and treatment of any woman with cancer? 
         Answers matter in the allocation of resources.
         Last week, I went to a reception for the new Center for Women’s Oncology at a comprehensive cancer center where I get my care. The center combines the clinics for breast and gynecologic cancers.
         I wore a beautiful outfit in deep pink that I had just gotten from Goodwill. What was I thinking? I had worn the wrong gang colors. Because my cancer arose in my "lady parts," people told me that I should have worn teal, the color for ovarian cancer, which seems to have morphed into the color for all gyn cancers.
         The color for my cancer, leiomyosarcoma, is purple, but few people know that because we are the abject. (I’m sorta, kinda referencing Judith Butler.)
         There was live music, gourmet hors d’oeuvres from a catering staff, and an open bar. One doctor joked that patients might not mind the usual wait time if the waiting room could retain the bar.
         Survivors were given a white rose and a tote bag when we left. (In sarcoma, we don’t even get drugs approved for us; we’ve got to use other people’s drugs off-label.)
         At the women’s center, we won’t keep the bar, but there’s no doubt that women whose cancers arose in their reproductive tracts will get an upgrade in amenities by the merger with the breast clinic. Breast cancer patients tend to have the best.
         I understand that many women have worked hard to raise money for breast cancer. In a system that relies heavily on volunteers and donations, however, you can expect that people with rare diseases will get less.
         As an example: I was amazed to hear that some breast-cancer patients get teddy bears after surgery that they can hold to their chests when they cough, sneeze, etc., to minimize the pain. After major abdominal surgery, I was lucky that someone suggested holding a hospital pillow against my body.
        In the new center, plush bathrobes in a light sage, tied with a ribbon, rested on the exam tables. I asked if those were the gifts we could win in the drawing. No, I was told, patients would be wearing them. WHAT?? We don't have to wear stiff paper drapes or white-with-small-flowers-and-washed-a-zillion-times-in-hot-water gowns?
        Combining the breast and gyn clinics can save money in terms of staffing and space. People I trust also say there's a benefit to more doctors and researchers collaborating. (That's why I wish oncologists in gyn and sarcoma would collaborate more. They rarely go to each other’s conferences, for example.)

        There’s a genetic link between some breast and ovarian cancer. For the women with that genetic profile, it makes sense to join forces. But there are other cancers connected by genetics or treatment, e.g., retinoblastoma and soft-tissue sarcomas. I hope all oncologists and support staff understand the various connections.
        Breast cancer has been marketed as the sexy cancer – save the ta-tas!!!! ® – and as the women’s cancer. Not to be outdone, gyn oncologists have the Women’s Cancer Network. Meanwhile, lung cancer kills more women than breast or gyn cancers.

         I wonder how women with other kinds of cancer feel.

Happy Gynecologic Cancer Awareness Month! (by Suzie)

"Who is NED and why does everyone want a nice slow dance with him?" asks EyesOnThePrize, a nonprofit that provides gyn cancer support and information. NED stands for "no evidence of disease." That's what doctors say when they can't detect any signs of cancer, but don't feel comfortable proclaiming a patient cured. Some of us relish our relationship with NED.

Six gynecologic oncologists formed a band named NED, and they rocked the San Antonio convention center at the annual meeting of the Society of Gyn Oncs in February. I joined the young 'uns, jumping up and down by the stage.

Their first CD, "Rhythm Heals," went on sale Tuesday, with proceeds going to the Gyn Cancer Awareness Movement. In the clip above, Dr. Joanie Hope sings lead vocals on the title song. This is what their record company says:

The mission of the band is to enhance knowledge about gynecologic cancers and bring hope through rhythm for women undergoing treatment. The doctors strongly believe music heals. In fact, more than 250 journal articles report findings investigating the beneficial effects of music on pain, anxiety or depression. In a recent study at Memorial Sloan-Kettering Cancer Center, investigators found that patients who received music therapy while undergoing chemotherapy reported 37% less mood disturbance than other patients and 28% less anxiety. Other studies have shown that music can assist patients in coping with difficult illnesses. N.E.D. is focused on using music to convey this comfort.

If you know nothing about gyn cancers, you may want to take a moment to familiarize yourself with symptoms. Here's an example of a common myth, from the Women's Cancer Network:

Historically, ovarian cancer was called the “silent killer.” That’s because symptoms were not thought to develop until the chance of cure was poor. Recent studies, though, have shown this term is not accurate. The following symptoms are much more likely to occur in women with ovarian cancer than women in the general population: bloating; pelvic or abdominal pain; difficulty eating or feeling full quickly; urinary symptoms (urgency or frequency).

If you think it's silly to have months dedicated to various causes, perhaps you've never had to fight to get your existence recognized. That brings me to my only criticism of the band. On its page that details gyn cancers, I wish it would mention sarcoma. I've written before on women, cancer and politics.

Cancer, women and politics (by Suzie)

         The U.S. Centers for Disease Control and Prevention have a public awareness campaign for the five most common types of gynecologic cancer. That’s admirable, and I support it. Last year, however, I complained that there was no mention of gyn sarcoma, the rare and aggressive cancer I have. (I've written about that, with an analogy to feminist politics.)
         At a recent medical conference, when I mentioned sarcoma to the two women at the CDC table, they looked annoyed. In a patronizing tone, they told me that experts had decided what was important. 

         Later, a CDC researcher talked about how women with ovarian cancer had pushed for the awareness campaign. If women with sarcoma wanted inclusion, they needed to push just as hard, he said. I couldn’t get across the idea that it’s unfair to ask a group with much fewer numbers to be just as vocal and do just as much work. 

         Women with gyn sarcoma represent 1-2 percent of all gyn cancers (although we may be undercounted). In comparison, Jews make up a similar percentage in the U.S. population, while people who identify as American Indian are even less. At what percentage point do we judge people not worthy of our attention?

         I talk about women with rare cancers, in regard to racial and religious minorities, not to suggest our discrimination is the same, but to address how society makes use of its resources. Should we focus on the majority to get the biggest bang for the buck? On the people most likely to do well? On those with the greatest needs? On those who have gotten the least help in the past?

        We're lucky that we have experts to make these decisions for us.

Fibroids and cancer (by Suzie)

         My previous post may have scared some women into wondering about the symptoms of gynecologic sarcoma.
         Let me highlight one: fibroids. Doctors, and the media, will tell you that fibroids don’t turn into cancer. But they may not tell you: Although sarcoma is very rare, when women do have it, the malignant tumors often get mistaken for benign fibroids.

         As a patient and volunteer, I’ve talked to many women with gyn sarcoma. In many cases, if not most, they have surgery for fibroids, only to get diagnosed with this rare and aggressive cancer. This happens so often that doctors call it the “whoops” procedure.
          I don’t want to worry women unduly. On the other hand, it’s hard for me to keep quiet when I know that diagnosing and removing sarcoma early can save a woman’s life.
          This doesn't have to be an either/or situation in which we turn women into hypochondriacs or else we accept that we'll lose a few to cancer. Another option is for science to come up with a better way of telling a fibroid from a cancer, before surgery. Doctors are working on this. (While they're working on it, let's hope they also discover the cause and cure.)

Mammograms, Calcium & Hormones (Oh, My!) (by res ipsa)

How do you deal with the constantly-changing, often-conflicting recommendations regarding women's health care? Obviously, you talk it over with your doctor and choose a path that he or she recommends and that you can live with. But how do you process every release of new data? Since I was old enough to pay attention to my own health, I've lost count of the flips, flops, and back flips on the subject of, say, the benefits vs. risks of birth control pills and/or hormone therapy for women with a family history of breast cancer; recommendations for which women should get mammograms and at what age they should start; and guidelines for taking calcium, Vitamin D, and/or iron. The shifting data and recommendations provoke anxiety in me, so I have to admit that defer entirely to my GYN for two reasons. First, I've been seeing her since I was a teenager and after all these years she's like a second mother to me. I feel like she knows me and my medical history very well and I feel that she's very cautious and methodical when it comes to my care. Second, due to an especially nasty family history involving both breast and uterine cancer and a tendency to spin out worst case scenarios at the observation of, say, a hangnail, I do a lousy job of managing the aforementioned anxiety, so in essence, I am letting my GYN manage it for me.

I am fortunate to have such a trusted adviser, but I realize that not everyone is as lucky as I am in that respect (and that someday, my GYN will retire), and so I am wondering, how do you do it?

The Health Insurance Marketplace Modernization and Affordability Act

This is in the same series of acts as "The Healthy Skies Initiative". Doublespeak plusgood, using Orwell's language. It does have some good points for small firms which would be allowed to band together to offer health insurance. But the major way the act would make health insurance "affordable" is by demolishing all those pesky state requirements which state that certain things must be covered. The attack on states' powers here is another excellent example of doublespeak, given the wingnuts' usual penchance for giving everything to the states. Except of course all those things they want to determine centrally. Oh well.

Planned Parenthood points out that women will suffer under this Act:

"We need to move forward, not backward in expanding access to quality health care, including birth control," said Planned Parenthood Federation of America President Cecile Richards. "Congress should work to protect patients, not undermine them."

This federal legislation would raze hundreds of state laws that ensure patients can get the medical care they need and would

not allow women to designate their ob/gyns as primary care providers

not allow women to seek care directly from their ob/gyns, but would force them to be screened by their primary care doctors first

dismantle coverage for contraception

dismantle coverage for annual cervical cancer exams

not allow women to stay with the same doctor throughout a pregnancy, if that doctor was dropped from the insurance provider

As an aside, if women must be screened by their primary care doctors first, before getting gyneocological treatment, and if these women didn't have to be screened this way in the past the effect of this change will be to raise costs by an extra doctor visit each time one of these women wants to see her ob/gyn.

Dismantling coverage for cervical cancer exams is really idiotic, too. But I nowadays expect idiotic things from these new Acts, especially if they have bracing names such as "Modernization" and "Affordability".