It's true. I need to schedule a gyno appointment. There's really no excuse considering a breast exam could save my life. A year ago I would have said screw it... I can wait a few months to have a cold metal object shoved up my vajayjay along with enough lube to make a small country slippery. But now? The gyno is not an annoyance... it's a priority and a new ally. I might even take this opportunity to shop around for a gyno that I really like! But then again... who knows what health insurance i'll have in a few months.
But on to the real reason for this post... Susan G. Komen for the cure is a great, extremely active non-profit that has a website with a lot of great resources, such as the one I posted. They also host a bunch of benefits and fundraisers, such as the Breast Cancer 3-day, which is coming to Philly in October and I'd like to round up my family to participate. I've never done a walk or anything before... and now is as good a time as any to start!
If anyone reading has participated in a similar event, I'd love to hear what it was like. Ciao!
Friday, April 18, 2008
Tuesday, April 8, 2008
Universal Shmuniversal?
For some reason (and I don't think I'm the only person who notices this), I've been extra involved in this year's primary. And I never really cared about politics before.
I've mostly been listening to candidate's positions on Iraq, the economy, etc... but I haven't thought much about their healthcare policies. This morning, though, I realized that as someone who is BRCA positive, healthcare is something I should really care about! Now both my parents are in the health profession (my dad a gyno, my stepmom a maternal fetal nurse), so I've always taken it for granted that my healthcare needs would be met. I've also been well-advised by my dad since he knows so much about health issues that affect women, and since my mom had cancer 19 years ago, we're good friends with doctors, nurses, counselors, etc. who have been working with breast cancer for many years.
It's GREAT.
But I realize everyone is not so lucky, and I'd love to hear what other people think. The idea of Universal Healthcare seems great to me. Everyone would get the care they need without shelling out an arm and a leg. But I'm scared about the possibility of lengthy wait times, especially if I happen to get a chronic disease. I'm also scared about the availability of resources. With so many obese people, smokers, and unhealthy people in general, who's to say someone with cancer will be a priority? (Of course this begs the question, why should some health complications take precedence, isn't that unfair? But that's for another day... or month or year).
But I also think the way healthcare works now is advantageous because it allows people who have more to get more. And as one who has more, that puts me in a good position. Again, I realize everyone is not so lucky.
So my (very general) question is... what do you think about the healthcare debate in regards to women who are BRCA positive? Which system would work best for us? Or what kinds of reforms could work in either system to give us the best possible chance at prevention, cure, recovery... etc.
(Am I even asking the right question?)
I've mostly been listening to candidate's positions on Iraq, the economy, etc... but I haven't thought much about their healthcare policies. This morning, though, I realized that as someone who is BRCA positive, healthcare is something I should really care about! Now both my parents are in the health profession (my dad a gyno, my stepmom a maternal fetal nurse), so I've always taken it for granted that my healthcare needs would be met. I've also been well-advised by my dad since he knows so much about health issues that affect women, and since my mom had cancer 19 years ago, we're good friends with doctors, nurses, counselors, etc. who have been working with breast cancer for many years.
It's GREAT.
But I realize everyone is not so lucky, and I'd love to hear what other people think. The idea of Universal Healthcare seems great to me. Everyone would get the care they need without shelling out an arm and a leg. But I'm scared about the possibility of lengthy wait times, especially if I happen to get a chronic disease. I'm also scared about the availability of resources. With so many obese people, smokers, and unhealthy people in general, who's to say someone with cancer will be a priority? (Of course this begs the question, why should some health complications take precedence, isn't that unfair? But that's for another day... or month or year).
But I also think the way healthcare works now is advantageous because it allows people who have more to get more. And as one who has more, that puts me in a good position. Again, I realize everyone is not so lucky.
So my (very general) question is... what do you think about the healthcare debate in regards to women who are BRCA positive? Which system would work best for us? Or what kinds of reforms could work in either system to give us the best possible chance at prevention, cure, recovery... etc.
(Am I even asking the right question?)
My Commute and Cancer
Check out the new link I added. Because I commute to work every morning, I spend lots of time listening to NPR (which I would highly recommend to everyone). Cancer.net is a website that supports NPR, and today I finally took a look at it. It's a really great site with TONS of resources, including the one I posted which is the section of the site about genetics. But you can also find information on all kinds of cancers, including breast and ovarian, and also about things like advocacy and the psychology of getting cancer. I think it's worth it for everyone to poke around. It's sponsored by the American Society of Clinical Oncology and the articles are all reviewed.
So what are you waiting for?!? Take a look.
So what are you waiting for?!? Take a look.
Thursday, March 6, 2008
When I first saw this article, I was kind of furious. It paints genetic testing as such a negative thing... as in companies are just doing it to make money and it's very hoaxy and not accurate. I guess what upset me is that the article doesn't highlight anything GOOD about genetic testing.
But then what REALLY irked me were the comments people were making to the article. (USAToday lets you view reader comments... I find it interesting to read what the common person has to say about the news...) People wrote things like "Only rich people would do this but they should just donate the money they would spend to charity" or "We're all going to die eventually, why would I want to know what diseases I have?"
How could people be so insensitive? Some of these tests are beneficial because they can jump-start lifestyle changes and healthy behavior and other preventive measures and... Well, I could go on but I don't think it's worth it to spend my energy getting worked up. It's just a silly article presented in a negative light.
And here it is...
Companies cash in on checking your DNA for disease
By Rita Rubin, USA TODAY
Several new companies are betting consumers will be curious enough to shell out $1,000 or more to learn what diseases might lurk in their genes.
Using a half-teaspoon of saliva, collected at home and mailed to a lab, companies with catchy names such as de-CODEme and 23andME (for humans' 23 chromosomes) are selling the chance to peer into one's genome, the hereditary information encoded in DNA.
The Genetics and Public Policy Center in Washington, D.C., has identified eight companies marketing a "personal genome service." They test for common gene variations linked to a higher risk of leading killers such as heart disease. Other firms market tests to detect genetic susceptibility to specific conditions; one for late-onset Alzheimer's is due this spring.
The tests raise a host of ethical and practical questions: Why should people be tested to see whether they're at risk for a disease they can't do anything about? What will they do with their results? What safeguards are in place to protect their privacy?
In The New England Journal of Medicine on Jan. 10, Harvard epidemiologist David Hunter, Muin Khoury of the Centers for Disease Control and Prevention and Journal editor Jeffrey Drazen called efforts to popularize genetic testing "premature." The diseases listed by test sellers involve multiple gene variations — many of which aren't yet known — that interact with each other and the environment, they say.
Linda Avey, who is co-founder of 23andMe in Mountain View, Calif., disagrees. "The debate is sort of over," she says. "There's so much interest and pent-up demand for this." Her firm charges $999 for a genetic profile. She won't say how many customers have paid for the test.
Among the more targeted tests, HairDX in Irvine, Calif., says for $149 it can tell men whether they're likely to start balding at 40 so they can "make the right decisions to preserve" their hair. Then there is Alzheimer's Mirror, which tests for the one known genetic risk factor for late-onset Alzheimer's.
"My big concern is that these tests are massively under-regulated," says Kathy Hudson, director of the Genetics and Public Policy Center. "There's nobody looking seriously at whether the claims these companies are making about the tests are accurate."
But then what REALLY irked me were the comments people were making to the article. (USAToday lets you view reader comments... I find it interesting to read what the common person has to say about the news...) People wrote things like "Only rich people would do this but they should just donate the money they would spend to charity" or "We're all going to die eventually, why would I want to know what diseases I have?"
How could people be so insensitive? Some of these tests are beneficial because they can jump-start lifestyle changes and healthy behavior and other preventive measures and... Well, I could go on but I don't think it's worth it to spend my energy getting worked up. It's just a silly article presented in a negative light.
And here it is...
Companies cash in on checking your DNA for disease
By Rita Rubin, USA TODAY
Several new companies are betting consumers will be curious enough to shell out $1,000 or more to learn what diseases might lurk in their genes.
Using a half-teaspoon of saliva, collected at home and mailed to a lab, companies with catchy names such as de-CODEme and 23andME (for humans' 23 chromosomes) are selling the chance to peer into one's genome, the hereditary information encoded in DNA.
The Genetics and Public Policy Center in Washington, D.C., has identified eight companies marketing a "personal genome service." They test for common gene variations linked to a higher risk of leading killers such as heart disease. Other firms market tests to detect genetic susceptibility to specific conditions; one for late-onset Alzheimer's is due this spring.
The tests raise a host of ethical and practical questions: Why should people be tested to see whether they're at risk for a disease they can't do anything about? What will they do with their results? What safeguards are in place to protect their privacy?
In The New England Journal of Medicine on Jan. 10, Harvard epidemiologist David Hunter, Muin Khoury of the Centers for Disease Control and Prevention and Journal editor Jeffrey Drazen called efforts to popularize genetic testing "premature." The diseases listed by test sellers involve multiple gene variations — many of which aren't yet known — that interact with each other and the environment, they say.
Linda Avey, who is co-founder of 23andMe in Mountain View, Calif., disagrees. "The debate is sort of over," she says. "There's so much interest and pent-up demand for this." Her firm charges $999 for a genetic profile. She won't say how many customers have paid for the test.
Among the more targeted tests, HairDX in Irvine, Calif., says for $149 it can tell men whether they're likely to start balding at 40 so they can "make the right decisions to preserve" their hair. Then there is Alzheimer's Mirror, which tests for the one known genetic risk factor for late-onset Alzheimer's.
"My big concern is that these tests are massively under-regulated," says Kathy Hudson, director of the Genetics and Public Policy Center. "There's nobody looking seriously at whether the claims these companies are making about the tests are accurate."
Thursday, February 21, 2008
To Disclose or not to Disclose... "Hey Boss, I might get cancer."
I'm ill, but who needs to know?
That's the title of an article in today's New York Times. It's about people who have been diagnosed with chronic illnesses deciding whether to disclose that information to their workplaces or not. I know it's not directly related because being BRCA positive isn't a chronic disease, but I think some of us face the same dilemma.
I remember when I found out I was positive (that was last summer so about 8 months ago) and just afterwards I accepted a job. I was worried about signing up for health insurance from my employer. Would they ask me if I had any genetic mutations? If they did would I have to disclose? Would they deny me insurance? Would I have to pay an exorbitant price (more exorbitant than normal, for that matter)?
My dad and I tried to do some research. We looked online for legislation, and apparently Pennsylvania was one of few states not to have any legislation about genetic issues and health insurance. My dad contaced the head of FORCE (which I talk about below) but I don't think he ever got a straight answer. With something so new as genetic testing, and someone so young as me who just graduated college and had to apply for new health insurance, no one really seemed to know what to do.
My job didn't ask, luckily, so it was a non-issue. But still, I wonder... And the question is unanswered. How does a BRCA mutation affect your health insurance? Your relationship to your workplace? Is it something you should disclose, or keep mum, and what are the advantages/disadvantages of either situation?
Ideas?
I won't post the article here because it's a little too long. But if you want to read it, I think you can link to it here: http://www.nytimes.com/2008/02/21/fashion/21WORK.html?pagewanted=1&th&emc=th
Thank goodness I don't have multiple sclerosis or fibromyalgia. But sometimes I wonder also... is this positive test any better?
I remember when I found out I was positive (that was last summer so about 8 months ago) and just afterwards I accepted a job. I was worried about signing up for health insurance from my employer. Would they ask me if I had any genetic mutations? If they did would I have to disclose? Would they deny me insurance? Would I have to pay an exorbitant price (more exorbitant than normal, for that matter)?
My dad and I tried to do some research. We looked online for legislation, and apparently Pennsylvania was one of few states not to have any legislation about genetic issues and health insurance. My dad contaced the head of FORCE (which I talk about below) but I don't think he ever got a straight answer. With something so new as genetic testing, and someone so young as me who just graduated college and had to apply for new health insurance, no one really seemed to know what to do.
My job didn't ask, luckily, so it was a non-issue. But still, I wonder... And the question is unanswered. How does a BRCA mutation affect your health insurance? Your relationship to your workplace? Is it something you should disclose, or keep mum, and what are the advantages/disadvantages of either situation?
Ideas?
I won't post the article here because it's a little too long. But if you want to read it, I think you can link to it here: http://www.nytimes.com/2008/02/21/fashion/21WORK.html?pagewanted=1&th&emc=th
Thank goodness I don't have multiple sclerosis or fibromyalgia. But sometimes I wonder also... is this positive test any better?
Wednesday, February 20, 2008
New research links nighttime illumination with breast cancer rates
Here's an article from today's USAToday. Viable? Maybe not. Interesting? Yes.
And geez... doesn't it just seem like everything can give you cancer these days? Don't stand in front of the microwave. Don't excessively use your cell phone. Don't eat too much Sweet 'n Low. And now - stay away from places with too much artifical light?
Maybe cancer is just a natural progression in our less-than-perfect bodies?
New research links nighttime illumination with breast cancer rates
When Israeli scientists matched satellite images with cancer registries, The Washington Post says they discovered that the breast cancer rate was much higher among women who lived in the brightest spots on the map.
They didn't find a similar correlation with other types of cancer, the Post says.
"The mechanism of such a link, if real, remains mysterious, but many scientists suspect that melatonin is key," the paper says. "Secreted by the pineal gland in the brain, the hormone helps prevent tumor formation. The body produces melatonin primarily at night, and levels drop precipitously in the presence of light, especially light in the blue part of the spectrum produced in quantity by computer screens and fluorescent bulbs."
Experts say that includes the energy-saving compact-fluorescent bulbs that have become so popular in recent years.
Last year, the World Health Organization announced that it considered the graveyard shift a "probable carcinogen" because of mounting research that suggests a link between exposure to light at night and the development of cancer.
Here's an overview of recent studies on light and cancer. The Post says this latest research is described in Chronobiology International.
And geez... doesn't it just seem like everything can give you cancer these days? Don't stand in front of the microwave. Don't excessively use your cell phone. Don't eat too much Sweet 'n Low. And now - stay away from places with too much artifical light?
Maybe cancer is just a natural progression in our less-than-perfect bodies?
New research links nighttime illumination with breast cancer rates
When Israeli scientists matched satellite images with cancer registries, The Washington Post says they discovered that the breast cancer rate was much higher among women who lived in the brightest spots on the map.
They didn't find a similar correlation with other types of cancer, the Post says.
"The mechanism of such a link, if real, remains mysterious, but many scientists suspect that melatonin is key," the paper says. "Secreted by the pineal gland in the brain, the hormone helps prevent tumor formation. The body produces melatonin primarily at night, and levels drop precipitously in the presence of light, especially light in the blue part of the spectrum produced in quantity by computer screens and fluorescent bulbs."
Experts say that includes the energy-saving compact-fluorescent bulbs that have become so popular in recent years.
Last year, the World Health Organization announced that it considered the graveyard shift a "probable carcinogen" because of mounting research that suggests a link between exposure to light at night and the development of cancer.
Here's an overview of recent studies on light and cancer. The Post says this latest research is described in Chronobiology International.
Friday, February 1, 2008
FORCE - Facing Our Risk of Cancer Empowered
Another thing I'd like to do with this blog is research and provide resources for BRCA positive or other high-risk women.
FORCE (Facing Our Risk of Cancer Empowered) is a non-profit that caters directly to people with a high risk of developing breast cancer - whether it be genetic or hereditary. Here's their site: http://www.facingourrisk.org/
They have branches all over the country, including one in my stomping ground, Philly. The site has message boards and links to good information, and they publish a newsletter. That's just a tiny summary but there's much more so it's worth checking out. I heard about it through my genetic counselor (who I'll refer to on here as my GC, at least from now on).
In May FORCE is hosting it's third national conference called Joining FORCES, to bring together professionals and individuals affected by breast or ovarian cancer risk. My stepmom is a nurse and my dad, being the one who signed me up for BRCA testing in the first place, suggested we go together.
So I'll be in Tampa for the conference, and you can bet your bottom dollar i'll be reporting it all on here. That's not for another few months... so in the meantime... you'll just have to listen to me prattle about other things.
FORCE (Facing Our Risk of Cancer Empowered) is a non-profit that caters directly to people with a high risk of developing breast cancer - whether it be genetic or hereditary. Here's their site: http://www.facingourrisk.org/
They have branches all over the country, including one in my stomping ground, Philly. The site has message boards and links to good information, and they publish a newsletter. That's just a tiny summary but there's much more so it's worth checking out. I heard about it through my genetic counselor (who I'll refer to on here as my GC, at least from now on).
In May FORCE is hosting it's third national conference called Joining FORCES, to bring together professionals and individuals affected by breast or ovarian cancer risk. My stepmom is a nurse and my dad, being the one who signed me up for BRCA testing in the first place, suggested we go together.
So I'll be in Tampa for the conference, and you can bet your bottom dollar i'll be reporting it all on here. That's not for another few months... so in the meantime... you'll just have to listen to me prattle about other things.
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