Showing posts with label BRCA. Show all posts
Showing posts with label BRCA. Show all posts

Sunday, January 27, 2008

Breast Cancer Gene Testing Less Likely Among Blacks

NEW YORK (Reuters Health) - African American women are generally less likely than white women to pursue genetic testing for BRCA1 or BRCA2, the gene mutations associated with an increased risk of break cancer, researchers report. However, African American women with a recent diagnosis of breast cancer are much more likely to do so, according to the article in the Journal of Clinical Oncology.

"Everybody deserves consideration for testing if their clinical and family history situation warrant it," Dr. James P. Evans, from the University of North Carolina at Chapel Hill, told Reuters Health. "Regardless of race, one has to approach genetic testing as an important option and explain the pros and cons to the patient."

Evans and associates examined race and the timing of breast cancer diagnosis and the frequency of BRCA1/2 genetic testing among women attending the UNC Cancer Genetics Service.

Among 768 women diagnosed with breast cancer who were offered BRCA1/2 testing, the rates of testing among African American and white patients did not differ, authors report.

Overall, African American women were 46 percent less likely than white women to undergo BRCA1/2 genetic testing, the author report.

Women who were diagnosed recently had a higher odds of pursuing testing than did women diagnosed more than 1 year before genetic evaluation, the investigators say, but this difference was statistically significant only for African American women, who were almost three-times as likely to undergo genetic testing.

Why a recent breast cancer diagnosis increases the use of BRCA1/2 genetic testing so "dramatically" among African American "could contribute to a better understanding of racial disparities in genetic testing and medicine," the authors conclude.
"We continue to aggressively try to find avenues for women who need testing but can't afford it, Evans said."One of the most interesting (and distressing) features of our study in my mind is that almost half of the patients who could benefit from testing can't get it...either because they had no insurance or their insurance was inadequate. Only through our special program were we able to provide it for all those patients."

Maximizing the use of BRCA1/2 testing requires "good genetic counseling and a personalized attentive approach on the side of the medical team," Evans advised. "We try to take a lot of time to explain the nuances to women and why testing can be of help to them and their families. I think this is especially important with African American patients where there is traditionally a lower level of trust in the medical profession (understandably)."

SOURCE: Journal of Clinical Oncology, January 1, 2008; breastcancer.org

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Wednesday, July 25, 2007

B-watch & Komen-watch

B-watch
Our friend B spent last night on the floor next to his bed. His helper didn't show up last night and his cell phone was downstairs. The helper showed up this morning and got him dressed and into his scooter. B called me to come and plug in his new scooter. It took both of us about 20 minutes to figure out where on the scooter you plug in the plug-thing. I couldn't read the info booklet without my reading glasses, and B said it didn't tell you where the cord went. But as I said, finally we prevailed. You'd think that a manufacturer of scooters for disabled people would have a special easy way to recharge the battery of the thing.
B is advertising for a new helper. If anyone knows a reliable person who can dress and undress someone with MS, as well as do very light housekeeping, and, if possible, light clerical duties, let me know (in comments section). It would help if the person lived nearby--Lakeview or Uptown.


Komen-watch
Our friend S went out with Nancy Brinker when she was just a Homecoming Queen runner-up from Peoria. Now she's a Dallas socialite and founder of Susan G. Komen for the Cure, named for her dead sister. In today's post, Capitol Fax talks about Komen and contributions. You see how important apostrophes are when you read the last sentence. Does he mean politician's or politicians' cash?
Reports Rich Miller of Capitol Fax:

"Only days after Antoin 'Tony' Rezko was indicted on federal corruption charges last fall,[Illinois] Gov. Rod Blagojevich's campaign moved quickly to try to limit the fallout and gave to charity political donations directly linked to one of the governor's former top advisers and fundraisers.But one charity eventually turned down the tainted money and sent the Blagojevich campaign a check back in March for $44,846.03, according to state-mandated campaign disclosure reports the governor recently filed.Officials for the Texas-based Susan G. Komen Breast Cancer Foundation, now known as Susan G. Komen for the Cure, said they returned the money because they do not accept political funds. [*]Despite the Komen foundation's explanation, state campaign disclosure records for the past seven years show the foundation and its Illinois affiliates previously accepted $2,110 in politician's cash, ranging from an ad in a program book to fundraising tickets to outright donations."

In other Komen news: Earlier this month, the Komen gave $2 million to oncologist Insoo Bae of the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center to continue to study the the interaction between environmental carcinogens and genetic risk for breast cancer. The Lombardi Center reports that Bae is looking at the way genes and environment combine to cause cancer. Specifically: "Bae will examine a range of environmental carcinogens – such as cigarette smoke, alcohol, and dietary factors – to identify those agents that increase the probability that BRCA1 defective cells will become cancerous." Komen needs to keep going after the causes of cancer, and spend less time and money tying pink ribbons around everything that breathes and everything that doesn't. The Bae research is good news for us Ashkenazim, those mostly likely to have a BRCA1 or 2 mutation in our genes. As for me, I'm waiting to hear from the jolly genetic counselors about what my blood sample revealed. According to them, I have an 18 percent chance of having a BRCA gene defect. I probably don't. It would be nice if I didn't. About 90 percent of Jews in the U.S. are Ashkenazi, from West, Central and East European countries. The rest are Sephardic, from Mediterranean and Arab countries. They're more likely to have mothers who belly-dance. We're the ones whose grandmothers spoke Yiddish. Yeah, yeah, I know that your German-Jewish grandmother quoted Goethe and didn't know from Yiddish. I'm speaking in general.

Tuesday, July 10, 2007

The Wild Girls of Genetic Counseling

Today I went to the Cancer Genetics Program at Fancy Hospital to start finding out if I have either of the BRCA gene mutations, more common among us Ashkenazim than the general population. The mutations increase a person's risk for both breast and ovarian cancer. If I have the mutation, I'll send my right ovary into storage. (The left has already gone to its final reward.) I was the only patient in the office, which just had three chairs in the waiting room. It was so odd and quiet compared to the vast waiting area of Chemolandia. A chirpy intern had interviewed me on the phone already to gather all the information about cancer in the family. (Yes, we have cancer, we have many kinds of cancer: colon, endometrial, breast, stomach, lung, skin, parotid gland. Not to mention leukemia and Waldenström’s macroglobulinemia.) The intern came out to get me and I joined her and the genetic counselor, who was tall and blond and said, Someone's been writing on your head. The intern explained everything to me via diagrams in a book. She did a good job. Based on my family history, I have an 18 percent chance of having a BRCA mutation. I decided I wanted the blood test for it, and I also agreed to participate in some research, so four tubes of my blood were collected.

The blonde measured my head to see if it was big. It's not. It's normal. I always thought it was big, but that's because of the bulkiness of my former hair. There's a rare syndrome, Cowden, which is caused by a genetic mutation and makes you more likely to develop breast, thyroid, uterine and maybe colon cancer. I may be tested for that mutation, too. Besides a big head, other symptoms of Cowden syndrome are awkward gait, skin tags and bumps, what sounded like "hammertoes" in your colon, and lipomas. I've had a couple of random bumps removed and also a lipoma (which grew back). A lipoma is a fatty (lipos=Greek for fat; think liposuction...and My Big Fat Greek Wedding) tumor under your skin. I have one on my upper arm that grew to replace the one that was cut out. At the time of the surgery, I asked the surgeon to show it to me, and he did. It was yellow like chicken fat. So now my homework is to get the pathology reports from the bump- and lipoma-ectomies and my colonoscopy. The Counseling gal said tongue and mouth bumps can be part of the syndrome, and she checked out a tongue bump I've had for about 15-20 years. She looked around my mouth and gums. I felt like we were checking for ticks. (My friend D asks: What's considered foreplay in the Ozarks? Checking for deer ticks.)

I have to fill out a form to help researchers looking at another mutation. The counselor said there is follow-up for that study every two years. So people will call you up and ask, Do you have breast cancer? I asked, picking up an invisible phone. I picked it up again, Do you have cancer? Do you have cancer? Are you dead?

It was that kind of atmosphere, where I felt I could do that. If those two are any indication, genetic counselors are a load of fun.

Today was the first time in five days that I was happy. I didn't feel like crying. I could laugh. It made me realize how miserable I'd been feeling.

I'll get the results in about four to five weeks. If I have BRCA1 or 2, then I'll have to think about getting my right breast removed, too. L and I have been saying that the mastectomy was nothing compared to the chemo, but still the mastectomy was something. And those fucking drains stuck inside my body! At least if I do have to get the second breast removed, I'll be grateful that I haven't had reconstruction yet. I could get both breasts filled up at the same time.

Years ago I was friends with a genetic counselor. We met when we were docents for the Chicago Architecture Foundation. When she gave tours of Glessner House, she'd say: See that cabinet over there? It's 100 years old...and it's never been opened. Her father gave Jewish tours in New York, and gave us a private one once of the Lower East Side. Our friend had breast cancer. And then she died.