Tuesday, August 19, 2008

Christina Applegate? Cancer? BRCA1+? You betcha.

So apparently Christina Applegate had breast cancer. I don't remember hearing anything about it. But according to this USAToday article:


she is having a double mastectomy with reconstruction... and she's BRCA1 POSITIVE!

Let me tell you why I think it's so significant. First off she's young and a popular actress with young women - a household name even. And she's being pretty outspoken about it, it seems. So I think this is a great opportunity for the world to take notice and for her to be an active member of the BRCA/hereditary-high-risk community. The article says she's starting a program to give women more affordable access to MRIs and she's also appearing on a one-hour special about cancer on TV. So yay for that!

It's funny because right after the FORCE conference, my stepmom was saying how FORCE needs a celebrity representative to get the word out to more people. It needs Hollywood! (I know that's a sad notion and it doesn't really need Hollywood, but it would be nice and a big boost.) Well - now the opportunity is here!

I wonder if more actors/actresses will come out of the woodwork with their family histories and testing?

Here's a quote of hers from the article to leave you with, and I think it's very true:
"Sometimes, you know, I cry and sometimes I scream and I get really angry and I get really like, you know, into wallowing in self-pity sometimes," she said. "And I think that's — it's all part of healing, and anyone who's going through it out there, it's OK to cry. It's OK to fall on the ground and just scream if you want to."

SO MUCH good luck to Christina. We're rooting for you!

Monday, August 4, 2008

Who you gonna tell?

So the other day my boyfriend and I are in my apartment entertaining my aunt and cousins, and they see a poster that I happened to receive at the Fox Chase In Our Shoes event. My aunt says, "That's a great poster, where'd you get it?" I was about to blurt out "Oh, Fox Chase at this BRCA event" but then I realized... SHE DOESN'T KNOW. And I don't exactly WANT her to know either. So I said something about an event that was for women at high-risk for cancer, thinking that sounded like anyone, and she didn't question it. My boyfriend on the other hand started to press the issue... saying something about how I got it free because I was speaking at the event... TMI.

So it got me wondering... why NOT tell my aunt? I mean I've got this friggin blog out there for all the Internet and their moms to see, and I won't even tell some of my own family members? I didn't tell my grandparents either. My immediate answer is that they're very prying people, and I don't necessarily want to explain it to them. Also, it might freak my grandparents out... they're old and decrepit and have their own health problems to worry about. So i'm protecting them, maybe even protecting myself from having to explain the whole thing. Saving my own breath. Maybe not the best reason, but my reason nonetheless for the time being.

I think the issue of who to tell is a hard one. If you want to be an activist, you're going to have to tell people. You're making the news public so you can encourage the public to care (which I'm all for, they totally should). But you have to be ready for what that means for you.

And then there are some people you have to tell for the good of your relationship with them. Your husband or serious significant other, for instance. Your parents, probably. Maybe your best friend? You want the support of these people, so you should let them in.

But I think it's ok to keep it a secret from some others. I don't think i'm a bad person... maybe a little bit selfish, but it's where I am right now and I understand that and I'm at peace with it.

Oh... and on the issue of writing a blog, I'm here to connect with others who might share some of my sentiments. Not to publish personal information. And I'd like to think this is a little bit anonymous... I mean I'm not posting pictures of myself (YET) or giving out my address.

What do YOU think?

Monday, July 28, 2008

It's been a while, but I'm still here!

Hey there blogland. I'm sorry it's been so long since i've posted but a lot's been going on. I know that's not a good reason to neglect you, however.

I just wanted to give a quick update...

First off - I climbed Mt. Washington (one of the highest mountains on the east coast, highest in the northeast) and it gave me a great sense of personal accomplishment. I will post pictures so as soon as I download them. It doesn't outwardly have much to do with BRCA, but when I think of it as a milestone in my life and a challenge that I completed and was proud of, it inherently connects. I guess it's because A) it's metaphorical for a big thing in my life and B) it's something physical that I was able to do. Exercise is a big thing for me with BRCA, and I trained for this and then did it in good time (though I was quite sore afterward). Now I just have to set goals for myself so I keep running and exercising.

Second off - I made an appointment to see a specialist who I've heard good things about, just to see if maybe she could be my contact for all things BRCA, and also the place I went to for regular screenings. Let me tell you... getting an appointment was a nightmare. These people only have ONE person working to get appts for new patients... and it is MUCHO hard to get in touch with her. As much as that pissed me off, i'm glad I got the appointment.

And here's another thing that's been on my mind... I really want to quit my job because I hate it and I hate my commute and I want a new one NOW. But I'm so scared to not have health insurance, even if it's just for a month or so. I'm not sure what to do, except maybe quit and immediately opt for COBRA or an individual plan for as long as I need to. We'll see. Dammit... why is this even an issue? Shouldn't we all be able to just see doctors when we want to? Anyway as you can tell I'm quite frustrated right now...

Alright that's all I'll give you for now. But tonight I'm going to attend a workshop at Fox Chase Cancer Center for young girls who may be at high risk. It's goal is to inform them of testing, how it works, what it means, etc. but also talk a little about the implications. I've been asked to share my story, which I'm SO willing to do. So I'll let you know how that goes.


Wednesday, May 28, 2008

My BRCA Support System

One thing that was brought up a lot at the conference was the importance of having a good support system, so today I'd like to talk about mine and invite you to think about yours.

First there's my dad (and I list him first because he's hands down the most important person in my life). We're very close since my mom died when I was 3, leaving him to raise me. We always had a great relationship growing up. My brothers were much older and left the house for college when I was still young, so from then on it was dad and me. You can definitely call me a daddy's girl. He's a wonderful man - smart, funny, insightful, helpful, always there for me through everything, sometimes harsh but I can always tell it's because he loves me and he always apologizes later.
He's the one who had me take the test in the first place, because he's a gyno and very up on women's health issues, plus we had a feeling something ran in our family. And he's been great ever since, helping me schedule appointments and contacting doctors and just gathering as much information as he can for me.
There was one moment at the conference that was really hard - there was an older man there who was BRCA positive and his daughter tested positive as well. He was talking about his fears, and one of them was (and he choked up while saying this) his daughter dying before him. I couldn't help but cry thinking of my own father and how hard this news must have hit him considering he watched my mom die and saw how it affected our family. But I think we were extremely strong then and we'll continue to be strong now and through whatever happens.

Then there's my stepmom, who is just wonderful. She came with me to the FORCE conference because she, like my father, is helping me gather information and learn all I can. She's a great person all around and I know she'll always be there for the family.

Then there's my boyfriend. Now... I know some of you might think "this girl is only 22, how serious can it be?" But I feel like he is "the one", and I'm not someone to jump to those heavy conclusions very quickly. He's been great about the whole thing.
After I got my test results, there was a night where I was freaking out and talking to him on the phone. He didn't say much, and I didn't expect him to. But the next day, I received an email from him saying that he knew I was worrying about alot, but him loving me wasn't something I had to worry about. He said he loved me for me and not for my boobs or my genes, and that was enough to make me cry all over again! I knew I found a good one, and if BRCA is going to make me settle down and have kids earlier than I expected, I hope it'll be with him.

Phew. SO that was just a wonderful little love-fest wasn't it? Even if you don't have a dad who's a gyno or a boyfriend or family members that help you research, it's crucial to find SOMEONE to be a support person who you can talk to, who will help you through hard times, and who will be neutral and speak reason when you may be freaking out. They stressed this a lot at the conference and I agree.

And now I ask... who makes up YOUR support system?

Wednesday, May 21, 2008

BRCA helps me procrastinate

So I'm procrastinating at work (story of my life, also why I don't direct my colleagues to check out my blog... well... that and other reasons) and I just wanted to say a few words about the FORCE conference. It was really wonderful and life-changing.

At one point during the first day, everyone was in a big hall listening to some opening remarks and I looked around at all the women (and some men) gathered and had this overwhelming urge to just burst into tears. I think it's because I was so warmed by the thought that this many people would gather together and openly share their stories, their hope, and their encouragement. I felt like I was part of a community of people who are all struggling with the same issues with the same fears and decisions to make - rather than an individual battling alone and in silence. The whole conference was worth it just for that sense of togetherness and support that it generated, and I'm really thankful I got to be a part of it.

Of course it was also great because of the wealth of information presented, much of which I promise I'll describe soon. In the meantime, I know I mentioned FORCE before but please take a look, if you haven't already, at their website facingourrisk.org. It's got great information and a very active message board.

I am not alone, and neither are you.

Friday, May 9, 2008

Algunas Cosas, and FORCE conference

First off... is anyone reading my blog? If you are, PLEASE write me messages. Don't just stop by and half-ass it. Talk with me. Ok? Thanks. I take valuable time out of my day to write. You should do the same. (Actually, my job is boring and I write to procrastinate, but that's not the point)

Second... next week I'm heading to the FORCE conference in Tampa with my stepmom. I'm not sure what to expect, especially since I think she registered me for all the courses and I really haven't checked anything out myself. But I'm hoping it will be enlightening and that I'll meet lots of people, and also that I'll have a lot to write about when I get home. I promise to take notes and report back diligently.

Third... even though people haven't been commenting on my blog, I myself have reached out to a few people and am happy to say that I've been having stimulating conversations with people about the issue of BRCA. I've thought of lots of important avenues to explore: family networks and other support systems, screening measures, how love-life is affected, health insurance, implications of getting the test, etc...

I realize most of what I've been doing so far is posting articles, and I haven't really sat down and explored any of these issues in detail, so I plan to do that soon. (aka when I have a project at work that I REALLY don't want to get started on)

I think that's about it. I just wanted to post cause I haven't posted in a little bit. And I'm moving into Center City next week (SO EXCITED) so I probably won't be able to post before I go to the conference (leaving next Thursday the 15th). Also this weekend is my 5 year high school reunion. WHEN did that happen?

Happy Friday!

Wednesday, April 23, 2008

Sometimes Congress does good work...

Check this article out, it's about a new bill Congress is close to passing called GINA (Genetic Information Nondescrimination Act):


Imagine being able to take a genetic screening test without worrying that you'll be denied health insurance. Sounds nice doesn't it? This bill would give us that peace of mind. It would also allow people who haven't gotten testing to come out and get it because they won't fear living with skyrocketing insurance premiums. Well done, Congress. You put a smile on my face this morning.

Unfortunately though, I have to note that the bill does nothing to alleviate high costs of health insurance. Maybe that's "Step 2"? Or how about finding a cure for Breast Cancer. Can that be step 2? Please?

Friday, April 18, 2008

Susan G. Komen reminds me: I really need to get to the gyno

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!

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.


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.

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."

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?


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.

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.

Tuesday, January 22, 2008

Study Says Implants Double Risk of Infection in Breast Reconstruction

Here's an interesting article I found in the New York Times. I'm always on the lookout for this kind of stuff so i'll post anything I find here for your reading pleasure.

Study Says Implants Double Risk of Infection in Breast Reconstruction

Women given implants immediately after mastectomies were twice as likely to acquire infections as those whose own tissue was used in breast reconstruction.

Published: January 22, 2008

Breast cancer patients who had reconstructive surgery using implants immediately after mastectomies were twice as likely to acquire infections as women who immediately had breast reconstruction using their own tissue, according to a study published yesterday.

The article in Archives of Surgery, which examined the medical records of breast surgery patients at Barnes-Jewish Hospital in St. Louis from mid-1999 to mid-2002, found that 50 of 949 patients acquired an infection at the surgical site within a year after surgery.

Roughly 12 percent of the infections occurred in mastectomy patients who immediately had implant surgery, compared with roughly 6 percent of infections in those who immediately had breast reconstruction using their own abdominal tissue, the study said. In noncancer patients, about 1 percent of infections occurred after breast reductions and no infections occurred after breast augmentation using implants, the study said.

“The bottom line is that implants are associated with an increased risk of infection in breast cancer patients,” said Margaret A. Olsen, the lead author of the study and a research assistant professor of medicine at Washington University School of Medicine in St. Louis. “The question is what factors contribute to this increased risk and what can be done to prevent it?”

The study noted whether patients had other medical conditions like diabetes, but it did not report how many underwent radiation or other treatments that might have played a role in the infections.

The study did analyze the cost to the medical center of each infection — about $4,100 per patient — a hospital-acquired complication not covered by managed care, she said.

But both kinds of reconstructive surgery entail risk. Dr. Stephen R. Colen, the chairman of plastic and reconstructive surgery at Hackensack University Medical Center in New Jersey, said operations using abdominal tissue took several hours longer than implant surgery, increasing the risk of blood clots and lung embolisms. In 2 percent of patients, the transplanted tissue dies, requiring further surgery, Dr. Colen said.

But implant reconstruction inserts a foreign object into the body, providing a surface on which bacteria may grow. And implantation involves a series of procedures — including one surgery to insert a skin-stretching device in the chest, followed by saline injections to expand the breast, another surgery to put in a permanent implant and a final surgery to attach a nipple — creating more occasions for infection to occur, Dr. Colen said.

Dr. Keith E. Brandt, a professor of plastic and reconstructive surgery at Washington University and an author of the study, said all patients received prophylactic antibiotics at the time of surgery. But postsurgical treatments for breast cancer, like radiation, may weaken the body’s ability to fight infection.

Friday, January 4, 2008

Why I'm here

The first few minutes of 2008 found me on a porch watching red and gold fireworks exploding in the distance. Behind me a rowdy group of my college friends chugged champagne straight from the bottles, and to my side they lit up cigars and congratulated each other on making it through the year.

Even with all the noise and light and excitement, I felt isolated. In my bubble everything was silent as I contemplated the events of the past year. Well… actually just one event — finding out that I was positive for the BRCA1 gene mutation. I had always known my risk of getting breast cancer was elevated. My mother died from it when I was three, and her mother died before I was born from Ovarian cancer. But actually seeing a piece of paper from a real lab with a percentage and a confirmation that I, in fact, was 3-7 times more likely than the average person to get breast cancer by the age of 70, really shocked me into thinking about things I had never thought about before. And that’s why, right there on that tiny porch, as the vapor of my breath mushroomed around my face, I resolved to share my thoughts and story with anyone who would listen.

So - here's my blog.

It's a place for me to share my hopes, fears, musings, and findings on the topic of BRCA and cancer risk. Please enjoy it and I'd love to get some feedback or start up a dialogue with anyone who is interested.