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Running For More…

The personal blog and website of Kristen Cincotta

Archive for the ‘Science’ Category

Army of Women Call to Action – Looking for Buffalo Area Participants!

Wednesday, July 30th, 2014

If you’re checking in for a Baby C update, he’s still not here. He’s taking his sweet time deciding when to come into the world, just like his Mom did!

But hey, while you’re here, I’ve got another great cause that I wanted to write about today. I can’t help myself, you all know that.

Anyways, I regularly get emails from Dr. Susan Love’s Research Foundation soliciting qualified participants for an array of breast cancer-related studies through their awesome and unique Army of Women initiative. Admittedly, most of the time, I don’t pay enough attention to the details of each study to find out if I’m qualified for the studies. But with not much to do these days but wait for Baby C (and get some actual work-work done from home), I’ve actually been taking the opportunity to look at some of the things that land in my inbox on a daily basis. And lo and behold, this Army of Women study caught my eye today. I’m not qualified for this study (I’m too young and can’t get to the study site easily) but with a large family and a number of friends from the Buffalo area, I figure that there’s a good chance that someone in my extended network will be. So I decided to share the details here and even if you’re not interested personally, maybe you’ll take five minutes to share the details with your network as well.

Please note that I’m not posting this particular call to action because I think it’s the best or most worthwhile of the many Army of Women studies. I’m posting this one in particular because I know a lot of people with connections to the Buffalo-area and geographic barriers are often some of the hardest to overcome when recruiting participants for a study like this.

Project Title A Pilot Study of the Flaxseed Effects on Hormones and Lignans: Role of Race, Genes, and Gut Microbiome

Researcher Susan McCann, PhD, Roswell Park Cancer Institute

Study Summary The purpose of this study is to determine whether adding flaxseed (a food high in compounds that can change hormones) to a regular diet changes hormones that are related to breast cancer risk and if the effect of flaxseed differs between African- American and Caucasian women.

Who Can Participate? You can sign up for A Pilot Study of the Flaxseed Effects on Hormones and Lignans: Role of Race, Genes, and Gut Microbiome if you meet ALL of these MAIN criteria:

• You are a woman between 45 and 75 years of age.

• You have stopped having your menstrual periods (you are postmenopausal).

• Your last menstrual period was more than 12 months ago.

• You have never been diagnosed with any cancer (basal and squamous cell skin cancers are OK).

• You have never had gastric bypass surgery.

• You have NOT taken estrogen or other female hormones (hormone replacement therapy, nonprescription hormones, or herbal supplements for menopausal symptoms) within the past 2 months.

• You do NOT eat flaxseed or take a flaxseed supplement regularly.

• You are NOT allergic to seeds or nuts.

• You have NOT taken antibiotics in the last 3 months

• You live near or are willing to travel (at your own expense) to Roswell Park Cancer Institute in Buffalo, New York

• You self-identify as:
o Non-Hispanic White OR
o Non-Hispanic Black

After you RSVP, the research team will contact you to ask additional questions to be sure that the study is a good fit for you.

What Does Participation Involve? If you sign up for A Pilot Study of the Flaxseed Effects on Hormones and Lignans: Role of Race, Genes, and Gut Microbiome, the research team will contact you to confirm that you are eligible. If you choose to participate in the study, you will be asked to: 

• Be randomly assigned (like the flip of a coin) to eat 2 tablespoons of ground flaxseed per day for 6 weeks or to maintain your usual diet. Two months later, you will switch into the other group for 6 weeks. 

• Complete an interview about your diet, health habits, medical history, reproductive history, and other information related to a woman’s risk of developing breast cancer. 

• Attend 5 morning visits throughout the duration of the study at the Prevention Center at Roswell Park Cancer Institute. At these visits, you will be asked to provide a blood sample and have your height, weight, and body fat measured. You will also be asked to bring a urine sample from the night before and a small sample of that day’s bowel movement that you collected at your home. The research team will provide the containers for these samples, and instructions on how to collect them. The research team will also call you periodically to ask you everything you ate and drank in the past 24 hours.

Where? Roswell Park Cancer Institute, Buffalo, New York

If you are interested in participating, or know of someone who might be, please click the image below to be taken to the Army of Women site for this project. And hey, while you’re on their site, please consider signing up for future Army of Women calls to action by clicking “Sign Up Today” in the menu bar at the top of the page!

Army of Women Logo

PS – Michelle’s IndieGoGo campaign to raise funds to supply protective equipment to the healthcare workers in Liberia on the front lines of the Ebola outbreak is still going strong. In case you missed it yesterday, please click here to learn more about her efforts and how you can contribute! Thanks!

I’m Back!

Tuesday, October 1st, 2013

Hi everyone!

First and foremost – MASSIVE apologies for going dark for the last week and a half. After the Atlanta Track Club Singleton 10 Miler race, I came home all set to spend the rest of the day doing two things: taking a nap and writing fundraising letters for my #Run4Results fundraiser for the American Cancer Society. Unfortunately, while I was napping, the battery in my computer ran completely down. And despite all of my best efforts, I couldn’t wake it up again. It was totally, completely dead. It turns out that on top of a number of small tics that my computer had developed over the years (I couldn’t drag and drop or right click, my battery was warped… ), my logic board was FRIED. Without a logic board, there was no using my computer. So, after three trips to the Apple Store, off my computer went to get new logic board and overall internal clean up. After a stressful week and a half, I finally got my baby back today, just about good as new!

Unfortunately, with my computer in the shop, I didn’t have many options for blogging or doing much on the internet besides monitoring my social media feeds on my phone. The only other computer in our house is my husband’s work laptop and understandably, he wasn’t comfortable with me using that machine beyond what was absolutely necessary. So I was relegated to doing all of my “computing” via iPhone – NOT ideal. It was very limiting and unfortunately, really put a cramp in my ability to run my fundraiser the way I had planned to.

Thankfully, all of that is now behind me. Given that I am currently furloughed from my job due to the government shut down, it looks like I’m going to be able to spend some time this week getting “caught up”. First priority, of course, is sending out those fundraising letters. I’m also going to write up my training from the past two weeks (which has been going pretty well!) as well as an overall September running recap. Time permitting, I will also be writing one large post on ACS and why I chose them for my fundraiser. I had intended to make those posts a series, but I think with my condensed timeline before the AllState 13.1 Half Marathon this coming Sunday, one post will have to suffice. Finally, I would be remiss if I didn’t write something for Breast Cancer Awareness Month which officially kicks off today. So look for that too.

I think that covers everything from my end. Again, apologies for disappearing into the internet ether and probably more importantly, extra emphatic apologies to anyone who had to endure my broken computer-related crankiness over the last couple of weeks. All in the past now!

Thanks for sticking with me!

ACS Determination Logo 2

Please click on the image above to visit my fundraising page and make your donation!

Fundraising Lessons Learned from my #Run4Research

Sunday, September 8th, 2013

Early in the year, I decided that in 2013, I would try to raise $1000 for three different cancer organizations in conjunction with my three biggest races of theTime for Research Alarm Clock year. First, I ran for the ROC  at the Publix Georgia Half Marathon back in March and had AMAZING success with that fundraiser, ultimately raising $1513. Coming off of that high, I thought that my second fundraiser, my #Run4Results for the Breast Cancer Research Foundation (BCRF) in conjunction with the Peachtree Road Race 10k would be just as successful. However, that fundraiser just never took off the way I had hoped that it would. In the end, I was only able to raise $205. For my third fundraiser of the year, the #Run4Results, which I launched a week ago and which benefits the American Cancer Society, I wanted to make sure that I do everything I can to recreate the magic of my #Run4ROC rather than repeating my less than successful #Run4Research. To that end, I’m going to take some time here to hash through what I think were the major lessons of the #Run4Research fundraiser that kind of wasn’t.

Lesson 1 – It Takes Time, Time, Time

I launched the #Run4Research on June 17th. The Peachtree Road Race was on July 4th. That means that even though I planned to continue the fundraiser for a few weeks post-race (and, in fact, you can still make a donation here if you’d like!), I really only gave myself three weeks before the race to generate awareness of my fundraiser and pull in donations. Then I went and developed a killer infected tooth that required an emergency root canal about a week before the Peachtree. Honestly, with as much pain as I was in, I was just not in the right mental state to be promoting my fundraiser. At that point, I was hurting so much, I wasn’t even sure how well I was going to run. Ultimately, I promoted my fundraiser for about a week, let it falter for a week and a half, tried to pump it again right before the race, and then kind of gave up when the donations just weren’t there.

So the lessons here? Give myself more time, both before AND after the race. I know from my years with the Breast Cancer 3 Day that people need time to hear about your effort and decide to donate. Sometimes they want to save more to make a bigger donation. Some people like to wait for pay day or the next time they pay bills. Some people just plain forget. Plus, things are going to come up on my end (like that toothache) and I need to be prepared for that. So this time around, I gave myself a full month before the race to raise awareness of my #Run4Results (which is probably still not quite enough) and I’m committing myself to continuing to promote this cause for a full two weeks post-race as well. With the #Run4ROC, I got the majority of my donations in the week after my big race because seeing my tweets and Facebooks posts and Instagrams from the race reminded them to donate. I’m sure if I hadn’t gotten discouraged and basically given up, I could’ve pulled in some more donations immediately after the Peachtree as well. So – more time pre-race to raise awareness and more time post-race to let people make their donations.

Lesson 2 – Just Like Training, Consistency is Key!

I already touched on this, but I was just NOT consistent in promoting my #Run4Research. I would tweet and Facebook about it regularly for a few days, and then completely go silent for days. In this era of social media, you have to say something repeatedly and then say it again if you want it to stick. There are just too many other things vying for people’s attention. If I don’t mention my fundraiser in some capacity on a regular-to-constant basis, people who have every intention of donating will forget. I’m guilty of this as well – I see fundraisers that others are doing and think “I should donate to so-and-so’s fundraiser!” and then completely forget when I don’t see constant reminders. So – consistency, consistency, consistency. Look for lots of posts, tweets, Facebooks, Instagrams, emails, whatever. It’s coming!

Lesson 3 – Move Beyond Social Media

All of my most successful fundraisers have included one key element – I sent out fundraising letters through both email and snail mail. Heck, my parents used to make me write a letter about why their co-workers should buy my Girl Scout cookies before they would take the order form in to work. I have been writing fundraising letters and distributing them in any way I could think of since I was a tiny person. So, what did I NOT make time to do for the #Run4Research? Yeah, I never sent any fundraising letters. No emails and definitely no snail mail. I tried to do everything through social media and it didn’t work. I also didn’t bother to try to plan any other type of fundraiser either. No raffles, no contests, no events. I can’t say that I will have time to plan any big fundraising events for my #Run4Results, but I AM going to get back to what I know works the best for me – those fundraising letters. I just can’t expect everyone to come to my social media sites and make donations. I need to bring my cause to them. If I want my friends and family to go to the extra effort to support me, I need to go the extra mile to ask them directly.

Lesson 4 – Connect the Dots

And by connect the dots, I mean two things: I need to draw the connection between what I’m doing (running until my legs feel like spaghetti) and what I’m asking them to do (donate, donate, DONATE!) and I need to highlight my connection to the organization that I’m fundraising for. Let’s take each of these in pieces, starting with the second one.

When I set out to accomplish my three big races/three big fundraisers plan, I spent a lot of time deciding which organizations I wanted to fundraise for. I knew that I wanted my organizations of choice to be cancer organizations, and I wanted at least one of them to be explicitly a breast cancer organization. I wanted reputable organizations with solid track records of doing good work. I wanted at least one organization to focus primarily on research because I’m a research scientist and I wholeheartedly believe that research is our silver bullet to ending cancer forever. I wanted there to be some structure for running a fundraiser on behalf of each organization to already be in place. And I wanted to stay away from Komen, not because I don’t support them (because I obviously do) but because I’ve focused almost exclusively on them in the past and knowing the growing public fatigue towards Komen, I wanted to use my efforts to spotlight other organizations. So that is how I landed on my three organizations: the ROC (my mom’s oncology center), BCRF (a breast cancer foundation focused primarily on research), and the American Cancer Society (highly effective and diverse organization with a great structure in place for the fundraiser).

For the #Run4ROC, I had to put in a little extra effort to get the fundraiser itself set up since there wasn’t really a model already in place. However, my connection to the organization I was fundraising for was readily apparent. My mom has been getting her treatments at the ROC since 2007 and they have been tremendous to us. Many of my potential donors also had friends and/or family who had been treated there and those that didn’t wanted to extend their gratitude to the staff there for taking such excellent care of my mom. I didn’t have to work very hard to sell people on why donating to their capital campaign was a great thing to do.

For the #Run4Research, though, I over-estimated both the general awareness of BCRF AND the trust that folks had in them. A lot of the big breast cancer organizations have been hit pretty hard in the press lately and they are all feeling the pinch because of it. While I know that BCRF isn’t perfect, they are a VERY good organization. And they do put their money where their mouths are – in 2012, they donated 91 cents of every dollar raised to breast cancer research. In promoting my fundraiser, though, I never really made it clear why I had chosen them. This should have been an easy sell – I was a biomedical research scientist and I’m currently a public health research scientist. If I can’t sell people on the importance of funding research (especially under sequestration when federal funding for research is super tight!), then no one can. And somehow, I failed to make that connection. I can’t expect my potential donors to do the leg work to research an organization they’re not familiar with. I need to be the one to do the leg work and bring the facts to them if I want them to donate, especially since this was my second fundraiser of the year.

And speaking of leg work – I also think I need to draw the connection between my running and my fundraising a little better. With the 3 Day, it was fairly easy to draw that line – if I didn’t reach my fundraising minimum, I didn’t get to walk. I had skin in the game to make my fundraising successful, as it were. With the fundraisers I’m doing this year, that isn’t the case. I was running the Publix Half Marathon whether my #Run4ROC fundraiser was a success or not and I was running the Peachtree regardless of what happened with my #Run4Research. I tried to connect my fundraiser to my running by suggesting amounts for people to donate (like donations per mile or per minute of time), but I’m not sure that worked as well as I’d have liked.

For me, the connection between my running and my fundraising is this: I’m working HARD to prepare for this race. Because of social media and email and all of that, I can draw as much attention to my training efforts as I want (Hey! I ran 12 miles on Saturday!). And in drawing attention to my training efforts (Did I mention it was HOT when I ran 12 miles?!), I hope that I can take that little spotlight I’ve claimed for myself (TWELVE MILES!), and redirect it onto a cause that needs as much of a spotlight as it can get (How about a $12 donation for my twelve miles?). I’m not delusional here – I know that I don’t have the clout (or even Klout) of a celebrity when it comes to drawing attention to a cause or an organization that I care about. But through this blog, my many years volunteering for breast cancer organizations, and my personal experience as a researcher, I think I’ve built a little bit of credibility when it comes to highlighting organizations worth supporting. And, well, I’m really good at being loud. If I can use my loud voice and my legs to draw attention to a cause that matters deeply to me, I’m going to do it. I think I just need to make that more clear in my fundraising efforts!

Translating the Lessons to Action

So given all that, here’s what I’m going to do differently to make my #Run4Results just as successful as my #Run4ROC:

1. Start earlier and stick it out longer. The AllState 13.1 Half Marathon is on October 6th. I’ve already started raising awareness for my #Run4Results and I’m committed to keep it up for at least six weeks – four weeks pre-race and two weeks post-race.

2. Promote my fundraiser and highlight my efforts towards it more consistently. I’ve already been highlighting all of the training that I’m doing to prepare for this race in my weekly training posts. I’m also going to start including a brief fundraising update in each of those posts as well as dedicated fundraising updates every two weeks. I’ve also got at least three posts planned over the next four weeks highlighting the great work of the American Cancer Society. Which brings me to action item #3….

3. Highlight the great work of the American Cancer Society. I chose them for my third fundraiser for a reason. I’m going to use this blog to tell you why.

4. Send out fundraising letters. I’m planning to send out one set in the next week or so and one set in the week immediately following the race. I’m going to send primarily emails but I’m also going to use snail mail to reach some family members who aren’t as comfortable navigating the online world (aka: my grandmother!).

It’s going to take a bit more commitment to make this fundraiser a success than in the past but I’m ready to give it the same time and effort that I’m giving to my training. After all, while all this sweaty running might draw some eyeballs, it’s the donations that will ultimately lead us to a cure (or cures!) for cancer.

ACS Determination Logo 2

Please consider supporting me in my #Run4Results at the AllState 13.1 Half Marathon to benefit the American Cancer Society by making a donation today!

Running for Research with the Breast Cancer Research Foundation!

Monday, June 17th, 2013

Back in March, I ran for the ROC. Peachtree Road Race LogoThis July 4th, it’s time for my next big fundraising race of 2013 – I’ll be Running for Research at the Peachtree Road Race with the Breast Cancer Research Foundation!

For my second big fundraising race of the year, I am choosing to focus my efforts on raising money for breast cancer research. I chose BCRF for this fundraiser because while many breast organizations do great work and raise money for research, BCRF is one of the few to focus on funding research as their primary mission. In fact, this year, BCRF is funding $40 million dollars in breast cancer research, research that will change the future for all of us. As a scientist myself, I know the power of a dollar. Research is very expensive and sometimes the return on investment isn’t great. But when those breakthroughs happen, they are worth EVERY SINGLE PENNY. I firmly believe that the only thing that will end breast cancer as we know it is research. Research on prevention. Research on better diagnostics. Research on better, less devastating treatments. Research on survivorship. Research dollars will make all the difference.

So, let’s work together and raise some of those research dollars today! As I mentioned, I am doing this fundraiser in conjunction with my running of the Peachtree Road Race on the 4th of July, the world’s largest 10k. This will be my fourth year running this iconic Atlanta event, and my first time tying in a charitable component. Just as the race is huge (60,000 runners!), I want my fundraiser to be huge as well. That’s why I’m setting my goal for this race at $1000 by the end of July. Here are a few options for how you can help me get there:

  • Donate the amount of money needed to sponsor research for the time I’ll be running this race. Based on my training and previous races, I’m estimating it will take me about an hour to make my way from Buckhead to Piedmont Park. BCRF estimates that on average, one hour of research costs $50, so that’s a great starting point for a donation. If $50 isn’t right for you, you can sponsor 30 minutes for $25 (the minimum donation required through BCRF’s Time for Research program), two hours for $100, six hours for $300… you get the picture. This is an excellent way to give your donation a tangible value!
  • Donate per kilometer or per mile. The Peachtree is a 10k, which is the equivalent of 6.2 miles. You can donate $2.50 per km for a $25 donation, $5 per mile for a $31 donation, or hey – donate $62 and honor the distance both ways!
  • Donate to dedicate a mile. As with my previous fundraiser, if you donate $100 or more, you can dedicate one of my miles to anyone that you wish to honor. I will recognize them on my personal website (www.runningformore.com) as well as on my shirt on race morning (provided I have your info by July 1st). Because I am reserving the first mile for Marcia, my best friend’s mom, and the final mile for my mom, there are only four miles to claim, so if you want to do this, donate soon!

To support me in my Run4Research, please click on the link below to visit my personal fundraising page on BCRF’s Time for Research website and follow the instructions to make an online donation:

http://www.timeforresearch.org/run4research

It’s really as easy as that! 100% of the funds donated through Time for Research go to the BCRF, who currently spend 91 cents of every dollar on breast cancer research and awareness programs. All donations are tax deductible. Please be aware that Time for Research does not accept mailed in donations at this time.

Please donate whatever amount is right for you. Every donation is step towards an end to breast cancer forever. I know many of you donated to my Run4ROC in March, and I will be asking for donations again this fall when I run the Allstate 13.1 half marathon to benefit the American Cancer Society. I’m asking a lot of all of you this year, just as I’m asking a lot of myself as I sweat it out in the hot Atlanta sun training for each of these races. I appreciate every cent that we are able to raise together for this important cause and for this great organization that often gets overshadowed by some of the better known breast cancer groups.

As I noted with my Run4ROC fundraiser, this fundraiser is different than the fundraisers I’ve done in the past. While I am using the BCRF’s Time for Research structure to host this fundraiser, there are no fundraising minimums required for my race entry and I’m not trying to earn any awards or prizes. I simply want to raise some money for the most powerful weapon we have against breast cancer – RESEARCH. I have seen this power firsthand, both with my own work during my lab days and now with my mom – the chemo drug that she is currently on was only approved by the FDA this spring. Through research, we are literally building the path forward for those living with metastatic breast cancer as they are walking down it. I don’t want anyone to ever come to the end of that road because we didn’t fund critical research when we could have. No one should ever have to hear “I’m sorry, there are no more treatments for you” and yet, for too many women, that is still a reality. The ability to change that is in our hands right now.

Clicking on the image will take you to my fundraising page too!

Thank you for your continued support of me and my fundraising efforts – together, we will end breast cancer forever!

Gone, But Never Forgotten

Friday, April 5th, 2013

I know that I still owe everyone a recap on my first half marathon and an update on the results of my Running for the ROC fundraiser. Those posts will be coming, soon. But tonight, I wanted to talk for a minute about Bridget Spence.

Bridget, featured in an ad for Komen for the Cure

Bridget was a member of my pink family. I never had the privilege of meeting Bridget, but as part of the extended 3 Day family, I felt like I knew her. I think a lot of us felt that way. She was so open and honest in her blog, My Big Girl Pants, it was hard not to feel like she was an old friend. Today, we all received word that after a long battle with breast cancer, Bridget passed away last night surrounded by those who truly did know and love her best.

Bridget’s cancer was similar to my mom’s. As similar as a cancer can be, I guess, when it strikes a woman in her early 60s and a young lady in her early 20s. Both of their cancers were/are HER2+, a protein marker that we didn’t even know was a thing until the last two decades. The discovery of HER2+ cancers quickly led to the development of Herceptin, the drug that both my mom and Bridget credited with extending their lives far beyond what used to be expected for Stage IV metastatic breast cancer.

Herceptin is a different kind of drug. The HER2 gene causes cells to express extremely high levels of cell surface receptors that promote improper, aggressive cell division. Herceptin is an antibody that gloms onto those receptors, effectively blocking them from promoting cell division. Unlike other chemo drugs, which interrupt universal cell division processes (and therefore target ALL dividing cells in the body, leading to those side effects that are commonly associated with cancer treatments), Herceptin only affects the cancer cells that are over-expressing these receptors. As a result, it is tolerable for far longer than most chemo drugs. My mom was on Herceptin for the entire first 18 months she was being treated and has been on it continuously since her cancer came back in early 2010. From what she wrote, Bridget was on it for most of her 6+ years of treatment. Herceptin is not a cure in and of itself. Instead, Herceptin keeps the cancer at bay so that individuals like Mom and Bridget can live their lives. Herceptin turns metastatic breast cancer into a chronic condition rather than an immediate death sentence.

Herceptin first gained FDA approval 15 years ago. That’s not that long ago, as far as biomedical breakthroughs go. But scientists aren’t generally the sort to be contented with one breakthrough. Herceptin isn’t perfect. So scientists and the organizations that fund them started asking “What’s next?”. And what was next is TDM-1. TDM-1 is a new drug that is a hybrid of two cancer drugs that we already had: Herceptin plus a super potent molecule of traditional chemotherapy. On its own, that chemo molecule is too damaging to be used in medical care, even for metastatic cancer. It just wouldn’t be tolerable at the doses you’d need to give to get full coverage of a cancer that has spread throughout the body. But! Stick that molecule of super chemo onto a Herceptin molecule, and it’s the equivalent of adding a honing device to missile. Suddenly, the chemo bomb is delivered directly to the cancer cells. That means that far less of the chemo needs to be given to have the same anti-cancer effect. All of the potency, relatively minimal cellular collateral damage. This is what a I truly believe is the future of chemotherapy. And because of Herceptin, HER2+ breast cancer is the first one to have a specific antibody-chemo conjugate that targets it.

TDM-1 was approved for use by the FDA on February 22nd, 2013, when it was rechristened “Kadcyla”. It was in clinical trials last summer when my mom was told that the current treatment she was on might be the last one available to her once her cancer outsmarted it. These last few months have been stressful, wondering what would happen first: would Mom’s cancer would wisen up to the taxotere she was taking and become resistant or would TDM-1 get approved? Thankfully, the clinical trials were successful and the FDA, recognizing the potential in TDM-1, expedited the approval just in time. Mom’s cancer hasn’t yet outsmarted the taxotere. But a few weeks ago, the taxotere outsmarted her lungs and caused significant fluid accumulation, making it unsustainable as a cancer treatment.

Mom will start Kadcyla in a few weeks, if not sooner. And because of Bridget, my mom knows what to expect of this brand new drug. That’s because brave, strong Bridget was in the clinical trials for TDM-1.

When your parent is diagnosed with cancer and you are told that it will be okay, because there are treatments available, you are relieved. You probably don’t give much thought to the people who came before you, who tried all of those experimental drugs and surgeries before we knew what they would do. When you’re told there may not be any more treatments available, it is terrifying. You are obsessed with the clinical trials: who’s in them, what are they experiencing, is it going to work???

You almost never get answers to those questions. Because of Bridget and her honesty, I did. And more importantly, my mom did. That kept Mom fighting so that she would be here for the day that TDM-1 became a reality for her. That’s why Mom is still here, feeling strong and optimistic about this next phase of treatment.

Bridget gave me the greatest gift I have, and probably will ever receive: more time with my mom. That is a priceless gift. In her final blog post back in December, Bridget asked that we not forget her. I know that I absolutely never will.

When I Ran for the ROC at the Publix Half Marathon in March, I dedicated one of my miles to Bridget, knowing that she had made the courageous decision to end her treatments. Tomorrow morning, I will run the Northwestern Mutual Road to the Final Four 5K benefitting the American Cancer Society’s Coaches vs Cancer program in Bridget’s name. It is the very least I can do to honor someone who has given me so much.

My BIG News – Dr. C Got a Job!

Monday, December 3rd, 2012

So… I sort of fell off the #NHBPM wagon. The goal was to write 30 blogs posts in 30 days. And I promise, I had every intention of doing just that. But yet, it’s now December 3rd and I only wrote/published 3 posts. I feel sort of bad about that. But not too bad, because I had a REALLY good reason for not posting:

I GOT A JOB!!!

It was a very long hiring process, one that honestly stretches back to last December when I applied for a public health policy research position on a team working on Traumatic Brain Injury (TBI) at the Center for Disease Control and Prevention (CDC). As it turns out, I didn’t get that job. But my resume did catch the eye of the team lead, who also serves as the acting branch chief for the Health Systems and Trauma Systems Branch in the Division of Unintentional Injury Prevention (DUIP), which is a part of the larger National Center for Injury Prevention and Control (NCIPC). When the next possible opening on the TBI team came up in May, she got in touch with me and we had a phone interview that went great.

And then I didn’t hear anything more all summer, other than assurances that NCIPC/DUIP were re-organizing and they’d be in touch. In the mean time, I continued applying for other jobs (and hearing nothing… ), researching possible fellowship opportunities, and networking, networking, NETWORKING. Anyone that I came into contact with who had even the most remote connection to a place I wanted to work or experience in the fields I’m interested in, I was all over it. In August, I spent over an hour chatting up a very nice woman who happened to work at the CDC while hanging out at my friend Kristin’s pool. And that conversation was where I learned about ORISE fellowships.

ORISE is an acronym, that stands for Oak Ridge Institute for Science and Education, a Department of Energy (DOE) institute focused on recruiting scientists and engineers to work on a whole host of health, science, and engineering issues. ORISE itself is a physical place located in Oak Ridge, Tennessee that is managed by the Oak Ridge Associated Universities (ORAU) consortium. However, not all ORISE scientists work in Tennessee. Rather, ORAU also sponsors a series of ORISE fellowships at a number of member institutions and partners, including at the CDC here in Atlanta.

So, what does this have to do with my new job? Well, as part of the big reorganization over in the NCIPC/DUIP, a team working on public health policy relating to prescription drug overdose (PDO) was relocated into the Health Systems Branch, which, as I noted above, is currently under the direction of the head of the TBI team that I interviewed with. The PDO team happened to have openings for two ORISE fellows to work on a two year project evaluating a series of state-run prescription drug monitoring programs (PDMPs). And my contact, who was still looking for a way to bring me in, recommended that I apply for the position, which I did.

And then I didn’t hear anything for over a month.

Thinking that the lack of communication meant the fellowship was a long shot at best, I soldiered on, pursuing networking opportunities with a commitment that could best be described as “relentless fervor”. As part of this pursuit, I figured out a way to attend the Network for Public Health Law Conference here in Atlanta in mid-October. The conference was awesome and I learned A LOT. But more importantly, I met A LOT of people who were generous with their time and really went out of their ways to help me build my networks within the public health field. As it turns out, one of the people that I met at the conference just so happened to work on the PDO team at the CDC. And he went back to his team lead and talked me up, effectively moving my resume to the top of the pile.

[Side note: When you are looking for a job, everyone, and I mean EVERYONE, will tell you “It’s all about who you know!“. I was told this three separate times at my dental cleaning in early October alone. Reluctantly, I admit that they’re right. But what people don’t tell you is that you, and you alone, control who you know. So if your current network isn’t generating promising leads, get out there and meet new people!]

Shortly after I got back home from my networking trip to DC (like I said, relentless fervor!), I had a phone interview with the PDO team lead and another senior member of the team. It was on a Friday morning, it lasted 27 minutes, and I had no idea if they liked me or not. After a weekend of trying to convince myself I didn’t blow it while simultaneously preparing for another networking meeting with a public health lawyer at the CDC the following Monday (RELENTLESS FERVOR), I received an email on Monday morning that basically said “Congratulations on being selected as an ORISE fellow! Here’s 800 pieces of paperwork we need to start working on to get your hiring approved and processed.”

I was FLOORED. But I was also cautious. In all of my networking meetings, I had learned that opportunities with the federal government can fall apart just as easily as they come together. So I tried my best not to say anything until everything was finalized (although my mom leaked it to my 94-year-old grandmother who then posted about it on my Facebook wall… ), which happened the Tuesday before Thanksgiving. So while I was stuffing my face with turkey and potatoes and pie, I was also incredibly grateful that after a long, frustrating search, I had FINALLY landed a fantastic position where I will get hands on experience learning how public health policy is set at the federal level.

I’ve now been at work for a little over a week and I’m still really excited, even though all I’ve gotten to do so far is paperwork and background reading. I hadn’t really considered working in drug abuse policy, but I’m finding the material stimulating and intriguing. Prescription drug misuse and abuse is a huge public health problem across the country right now and different states are trying different things to counter it. My job, then, in a nutshell, will be to help figure out which interventions and controls are working (and why) and which aren’t (and why). It should be a fun challenge and I know I’m going to learn a lot!

The one caveat, though, is that as a guest researcher at the CDC, my understanding is that I need to be careful what I choose to blog about here. In terms of “reporting” on the fundraising and awareness events that I try to take part in on a regular basis, I think I’m fine to keep blogging away. Likewise, fundraising for private organizations like American Cancer Society and Komen for the Cure. However, there are obviously confidentiality issues relating to the work I’ll be doing at the CDC, so beyond what I’ve shared in this post, I probably won’t write much about that specifically. Additionally, I need to be careful that any health and science posts (like my “cancer awareness month” series) are not misconstrued as approved by or representing any kind of official position by the CDC, ORISE, ORAU, or the Departments of Energy and Health and Human Services. A simple disclaimer should do the trick, but I’ll probably err on the side of caution for a while just to be safe.

Finally, I strongly suspect (although I haven’t seen it confirmed anywhere yet) that I am not supposed to do any public advocating or politicizing on issues pertaining to government-funded research, including the current state of said funding and the potentially detrimental effects of sequestration on it. It is something of a conflict of interest to be advocating for protecting/increasing CDC funding when said funding levels have huge implications for the future of my fellowship and whether or not I get hired on as a permanent CDC employee. So PLEASE. Since this is the only thing I’ll be writing publicly about sequestration from this point on, do me a favor and look it up. Look up the effects that an 8% across the board cut in funding will have on NIH, NSF, FDA, AHRQ, and yes, CDC. If you do nothing else, read through this report from Research!America. Read the info that AAAS (especially this report), CIBR, and the Society for Neuroscience have compiled on the issue (note, those links will take you to their sequestration pages). This letter by the Coalition for Health Funding is also worth a read, as is this ACS CAN blog post on sequestration and breast cancer research. Read the Cures Not Cuts! website. And CONTACT YOUR REPRESENTATIVES. The US government funds the vast majority of biomedical research in this country, research that will find the cures for Alzheimer’s, Parkinson’s, multiple sclerosis, muscular dystrophy, diabetes, and yes, someday, cancer. These potential cuts to research investments will have ramifications for decades. We’re falling behind already. We cannot afford any more budget cuts to our science and research budgets and everyone needs to make sure their representatives know it. This PDF from Research!America includes sample letters, tweets, and Facebook posts that you can use as inspiration. Do it for me. Call it a “Congratulations on the new job!” present.

So that’s my biggest news. But I do, actually, have other news as well, this time on the volunteering front. The day before I found out that my fellowship was approved and I had a start date in place, I was asked to be on not one, but TWO important committees at the Atlanta affiliate of Susan G. Komen for the Cure, with whom I’ve been volunteering at health fairs and fundraising events since late last winter.

First, I will be serving as the Safety Chair for the Atlanta Race for the Cure which will take place at Atlantic Station in May (registration is now open!). That means that I’m responsible for lining up the medical and ambulance support for the race as well as making sure everyone is where they should be and everything runs smoothly on race day. As I’ve gotten more involved with the local running community here in Atlanta and I’m pretty comfortable with the medical community here as well, it’s kind of a perfect fit! Organizing, race planning, and health care – it’s a perfect fit! I thought I had my first planning meeting for Race for the Cure committee tonight (we meet on the first Monday of each month), but it turns out that doesn’t start until next month. As best as I can, I’ll try to post updates and you can be sure that come spring, I’ll be recruiting as many people as possible to take part in the race!

Second, I will also be serving as a member of the Community Grants Review Board, something I’ve been wanting to do for years. For those who don’t know, 75% of the money that the Komen affiliates raise throughout the year (including through the Race for the Cure) stays with the affiliates and is redistributed throughout the local communities in the form of community support grants. The majority of these grants go to fund breast cancer initiatives and patient support work at local healthcare providers, community support centers (like YMCAs) and cancer support organizations. I’m thrilled that I now have the opportunity to help direct how Komen Atlanta chooses to use their funds. I have grant review training on Thursday and will have until early January to review my assigned grants. Then in late-ish January, I will get together with the rest of the reviewers to decide on which grants to fund for 2013-2014. I’m really looking forward to experiencing this aspect of Komen’s work from the inside and as best I can, I’ll try to keep everyone posted. However, to avoid conflicts of interest and all of that, I will need to keep the specifics of much of this work private as well.

So that’s how the end of 2012 and the beginning of 2013 are shaping up for me. After my defense last December, I thought my whole life would just start moving forward immediately. I fully expected to have a new job in place well before I graduated in May. I never anticipated that I would be unemployed for as long as I was. Moreover, I had no idea how restricted I would be financially because of my lack of a job, which, in turn, restricted the charitable work I was able to do. In short, throughout most of 2012, I felt stuck in the mud when I all I wanted was to be finally moving forward. Well, after almost a full year of fighting to get unstuck, I can proudly say: I AM UNSTUCK. I have a new job that I’m really fired up about where I’m going to learn a lot about public health policy, law, and hopefully communications from inside the federal government. I have two great volunteering gigs where I’m going to have a real influence on how a large breast cancer not-for-profit does their work. I honestly haven’t been this excited for the coming year in such a long time. It’s such a great feeling to finally be on my way!

#NHBPM Post 3: Stomach Cancer Awareness Month!

Wednesday, November 7th, 2012

Note: This post is a part of WeGo Health‘s National Health Blog Post Month: 30 posts in 30 days challenge. The prompt for Day 3 that I’m responding to is “I don’t know about this, but I’d like to…”. To see the rest of my #NHBPM posts, please click on the image at the bottom of this post.

So, as noted in my #NHBPM header introduction, the prompt for “Day 3” was “I don’t know about this, but I’d like too… ” which seems like the perfect time to write another post in my Cancer Awareness Months series. As I’ve written before, while I choose to focus my efforts primarily on breast cancer awareness and advocacy, I feel that it is important for all cancer advocates to have some familiarity with each of the major cancer subtypes. So using the “Awareness Months” as my guide, I’ve been researching and writing brief synopses on different subtypes of cancer, which can all be found filed under the blog category “Cancer Awareness Months”. The month of November serves triple duty as Lung Cancer Awareness Month, Pancreatic Cancer Awareness Month, and Stomach Cancer Awareness Month, which is what I’m going to be writing about today.

Stomach Cancer Awareness Month was started in 2010 by the group No Stomach for Cancer. They chose November because it is “a month known for the pleasure of eating”. With so many of us thinking about our bellies this month, this is the perfect month to shine a spotlight on this widely overlooked type of cancer. In fact, while mortality has been declining over recent decades (especially here in the United States), stomach cancer is still the second leading cause of cancer death word wide.

About Stomach Cancer

Stomach cancer, which is also commonly referred to as gastric cancer, is any cancer that forms in the tissues lining the stomach. The stomach itself is actually made up of five distinct tissue layers:

  1. Inner layer/lining (or mucosa): the site of digestive enzyme production and the most common origination site for stomach cancers.
  2. Submucosa: the supportive tissue layer for the inner layer of the stomach.
  3. Muscle layer: the location of the muscles responsible for digestive contractions that keep food moving through the GI tract.
  4. Subserosa: the supportive tissue layer for the outer layer of the stomach.
  5. Outer layer (or serosa): the tissue that covers the exterior of the stomach and holds it in place within the abdomen.
Per the NCI page on stomach cancer, this type of cancer usually begins in the cells of the inner layer of the stomach and can, over time, grow and invade the deeper tissues of the stomach wall. This type of stomach cancer is called adenocarcinoma and accounts for 90-95% of all malignant stomach tumors. The other three less common types of cancer found in the stomach are:
  1. Lymphoma, which is a cancer of the immune system that is sometimes found in the wall of the stomach. Lymphomas (which I wrote about in more detail here) account for ~4% of all stomach cancers.
  2. Carcinoid tumors, which start in the hormone -making cells of the stomach. These tumors account for ~3% of all stomach cancers.
  3. GI stromal tumors (or GIST), which originate in a specific type of cell in the stomach wall known as the interstitial cells of Cajal. These types of tumors can be found anywhere along the GI tract, although they are most commonly found in the stomach. Even so, GI stromal tumors are very rare among stomach cancers.
Risk Factors for Stomach Cancer
While we don’t know the direct cause (or more likely, causes) of stomach cancer, a number of risk factors have been identified, the management of which has led to the aforementioned decline in stomach cancer mortality here in the United States. I’m going to go through a number of these risk factors in more depth, but in general, factors that contribute to gastric inflammation and poor nutrition (which itself contributes to gastric inflammation) can have a large impact on a person’s risk for developing stomach cancer. As a result, stomach cancer is much more prominent in less developed countries (and in the less well off segments of developed countries as well) where healthy food, clean water, and proper refrigeration are not widely available.
Some of the recognized risk factors for stomach cancer include:
  • Infection with Helicobacter pylori bacteria. H pylori is a very common infection of the inner lining of the stomach. It is estimated that up to two-thirds of the world’s population is harboring H pylori at any given time, the majority of whom will suffer no ill consequences of this infection. In order to survive within the acidic environment of the stomach, these bacteria actively convert nitrites/nitrates from our food into ammonia, which can irritate the stomach lining resulting in peptic ulcers, among other complications. When left untreated over the long term, this irritation to the stomach walls can leave those tissues at a greater risk for developing cancer. H pylori is spread from person to person via contaminated food and water or through mouth to mouth contact. While H pylori is still very common around the world, the increasingly widespread use of antibiotics to treat other infections in developed countries has had the incidental effect of reducing H pylori infection rates in those countries. You can read more about the connections between H pylori and cancer here.
  • Eating a poor diet consisting of high amounts of smoked/pickled/salted foods and low amounts of fresh fruit and vegetables. This type of diet is thought to increase risk for stomach cancer due to the high amounts of nitrites/nitrates in foods that have been preserved using these methods, which again can contribute to lower stomach acidity and long term inflammation of the stomach tissues. Fruits and vegetables, with their plethora of good for you vitamins and minerals are thought to counteract some of these ill effects and are generally easier on the stomach. The advent of refrigeration has led to a significant decrease in preservation via smoking/pickling/salting and, when coupled with the increased ability to keep fresh fruits and vegetables on hand year round, has led to a significant reduction in stomach cancer around the world, and especially here in the United States and in Europe.
  • Pernicious anemia. Pernicious anemia is a form of anemia that is caused by a deficiency in vitamin B12.
  • Previous stomach surgeries or illnesses. Because these operations or conditions can alter the enzymatic balance within the stomach and leave the tissues irritated, having a history of GI surgeries or distress is associated with a higher risk for developing stomach cancer. This includes having a personal history of other forms of stomach cancer, including lymphoma and GIST.
  • Smoking. Smokers have twice the risk of developing stomach cancer as non-smokers, likely to due increased irritation of the stomach tissues.
  • The usual suspects. As with most other forms of cancer, age, obesity, lack of physical activity, and a family history of stomach cancer are also considered risk factors for stomach cancer.

To learn more about the risk factors associated with stomach cancer, I highly recommend the American Cancer Society’s webpage on the topic, here.

The Statistics

It is estimated that 21,320 people will be diagnosed with stomach cancer in 2012, with the majority of those diagnoses (13,020) occurring in men. 10,540 people will die of stomach cancer in that same time period. 26.9% of all people diagnosed with stomach cancer live at least five years following initial diagnosis. One in 116 people will be diagnosed with stomach cancer at some point in their lifetimes, with diagnoses in men being more common. Thankfully, for reasons discussed in the previous section, the incidence rate has been steadily dropping since the 1930s when stomach cancer was the leading cause of cancer death here in the United States. However, due to lack of refrigeration, unhealthy diets, and contaminated water, stomach cancer is still very common in other parts of the world where it remains the second leading cause of cancer death. It is estimated that the United States spends ~ $1.6 billion annually on treating stomach cancer.

The NCI allocated $14.5 million (or 0.29%) of their budget for stomach cancer research in 2010, the most recent year for which those statistics were available.

Recommended Resources

If you would like to learn more about stomach cancer, I highly recommend reading through the NCI’s web pages dedicated to stomach cancer, which can be found here. Their “What You Need To Know” section is particularly informative, as is the “snapshot” report on stomach cancer, especially the section discussing recent research investments and findings. I also found the American Cancer Society’s Learn About Cancer: Stomach Cancer section to be very useful. All of the statistics cited in the post were from the Surveillance Epidemiology and End Results (SEER) fact sheet on thyroid cancer, which can be found here. These webpages were my primary sources of information for this blog post.

The American Association for Cancer Research does not have any specific recommendations for organizations dedicated to stomach cancer research, stomach cancer advocacy, or patient support for those diagnosed with stomach cancer. However, the following organizations are (to the best of my knowledge) considered to be leaders in the field and may be worth consulting:

No Stomach for Cancer, the founders of Stomach Cancer Awareness Month

Can’t Stomach Cancer

The Gastric Cancer Foundation

The Life Raft Group, an organization that focuses on GI stromal tumors.

As with all of these cancer awareness posts, I hope that everyone reading this found it helpful and informative. I know I learned a lot researching it and will be a more effective cancer advocate for it!

Note: While I am a biomedical scientist, I am not considered an expert (medical or otherwise) on stomach cancer. This post, as with all of my “awareness month” posts, is not meant to be an in depth review of stomach cancer. Rather, I only wanted to provide a brief overview of stomach cancer in order to help further the larger cancer community’s awareness of this common cancer. Moreover, while I provided links to a number of stomach cancer organizations at the end of this post, I have not researched these organizations to the extent that I do for my “Spotlight On” series of posts. Until I can research them further, I am not explicitly advocating financial donations to these organizations (although I certainly won’t advise you against it either should you find them worthy!). Instead, I am recommending them here because each organization is a well respected leader in these specific areas and is considered a reputable source for further information on stomach cancer.

 

#NHBPM Post 2: Where Do the Candidates Stand on Health, Science, and Research Issues?

Sunday, November 4th, 2012

Note: This post is a part of WeGo Health‘s National Health Blog Post Month: 30 posts in 30 days challenge. The prompt for Day 2 that I’m responding to is “Find a quote and use it for inspiration”. To see the rest of my #NHBPM posts, please click on the image at the bottom of this post.

“Whenever the people are well-informed, they can be trusted with their own government.” ~ Thomas Jefferson

Unless you live under a rock, you know that this coming Tuesday is Election Day here in the United States. While many people have already early or absentee voted, the bulk of Americans (including me) will be going to the polls to cast our votes for the next President of the United States, for our members of the House of Representatives, and for other elected officials at all levels of government. As a research scientist who has been funded by a federal grant from NIH, the platforms of our candidates on research investments and regulation are incredibly important to me. The US government is far and away the largest investor in science and health research in the country. As both advocates for and beneficiaries of this life changing (and economically stimulating!) research, I think it is important that everyone going to the polls takes a moment to understand where their chosen candidates stand on issues pertaining to science, health, and technology.

To help everyone be as informed voters as possible on the candidates’ positions on these issues, I’ve compiled a series of resources and reviews that I think present the candidates’ policies and positions as fairly as possible. If you feel that I’ve linked to a particularly biased source, please let me know in the comments. While I definitely have my own personal preferences for how this election will turn out, it is not my goal here to sway anyone’s vote towards or against a specific candidate. Rather, I just wanted to point out some solid resources for those looking to better understand the candidates’ positions before voting on Tuesday.

ScienceDebate.org

Science Debate is an initiative that was started a year ahead of the 2008 election by six concerned citizens (two screenwriters, a physicist, a marine biologist, a philosopher, and a science journalist) in order to help bring science and technology issues to the forefront of the political debate. As they note on their website, within weeks of its founding, the Science Debate initiative had been endorsed by more than 38,000 scientists (including me!), engineers, and other concerned Americans, including every major American science organization, dozens of Nobel laureates, elected officials, business leaders, and the presidents of over 100 major American universities.  Their “call to arms”, as it were, states:

“Given the many urgent scientific and technological challenges facing America and the rest of the world, the increasing need for accurate scientific information in political decision making, and the vital role scientific innovation plays in spurring economic growth and competitiveness, we call for public debates in which the US presidential and congressional candidates share their views on the issues of the environment, health, and medicine, and science and technology policy.”

While the movement has yet to persuade the candidates for President to take part in a physical debate on these issues, it has been successful at pushing the candidates to more clearly define their positions on science, technology, and research. Starting last year, the folks at Science Debate began crowd sourcing a collection of important science questions that scientists, engineers, and concerned citizens wanted to hear the candidates answer. Together with their partner organizations (you can find the list of these organizations on their website), Science Debate culled the list to 14 critical questions, which were then presented to President Obama and Governor Romney. A subset of 8 questions were also presented to 33 members of Congress who serve in leadership positions on committees or subcommittees dealing with science issues. The answers from both Obama and Romney can be found here and the list of Congress members who were surveyed along with links to their responses can be found here.

The questions that were asked cover a wide range of topics and include: Innovation and the Economy, Climate Change, Research and the Future, Pandemics and Biosecurity, Education, Energy, Food Safety, Water Safety and Availability, Internet Regulations, Ocean Health, Science in Public Policy, The Future of Our Space Program, Protection of Critical Natural Resources, and Vaccinations and Public Health. The responses from each candidate are presented side by side, making it easy to compare and contrast between their positions on these issues.

For more information, please visit the Science Debate website here. You can also find Science Debate on Facebook here.

AAAS.org and Science Magazine’s Review of the Republican and Democratic Party Platforms on Science

Following the completion of both the Republican and Democratic conventions in September, Science magazine, the primary publication of the American Association for the Advancement of Science (AAAS) and one of the pre-eminent science journals in the world, published this editorial reviewing the platforms of both the Republican and Democratic parties on issues relating to science, technology, and the environment. The article touches on the parties’ overall stance on research funding, as well as their positions on funding for embyronic stem cell research, climate change, the future of our space program, energy policy, immigrant scientists, the role of “politicized” science, and actual budgets for this work proposed by each party. I felt that this piece was both comprehensive and fair in its assessment of each party’s platform. Please note that while this article is free to read, you may need to register with the AAAS website in order to view it.

The same author also wrote this editorial for the ScienceInsider section of the AAAS website on Paul Ryan’s record on science and government following his selection as Mitt Romney’s running mate in August. This analysis focused heavily on the funding allotted for various science agencies and initiatives in the budgets that Congressman Ryan has proposed over the years in his position as the Chairman of the House Budget Committee. To my knowledge, this article does not require registration to view.

You can read more about AAAS on their website, here, and you can find the website for Science magazine here. You can follow AAAS on Twitter, here, while the Twitter feed for Science magazine is here.

Research!America’s Your Candidates – Your Health Initiative

Research!America is the nation’s largest not-for-profit public education and advocacy alliance committed to making research to improve health a higher national priority. Research!America recently completed some polling that showed that (to quote from their website) “while Americans consistently describe medical, health, and scientific research as important, just 8% of people say they are very well informed about their elected officials positions on these issues”. To help address this shortfall and to aggregate presidential and congressional candidates positions in one place for easy access, they launched the Your Candidates – Your Health questionnaire and website in 2006. In a similar vein to ScienceDebate.org, Research!America sent a letter explaining the initiative and a 13 question survey to every candidate for President or Congress who appears on the ballot this November. All of the responses that they’ve received to date have been published on their website unedited, where they are easily searchable by state, zip code, or name.

Questions in the Your Candidates – Your Health survey touch on: the role of health research investments in rising healthcare costs, investment in research and innovation as a job creation strategy, STEM (science, technology, engineering, and math) education, military investments in research, the budgets for science and technology agencies including the CDC, AHRQ, and the FDA, research and technology tax credits, the role of the government in prevention research, federal funding of embyronic stem research, and whether or not candidates have a science advisor.

It should be noted that Governor Romney chose not to answer each question individually, and instead released a statement summarizing his position on many of these issues, which can be found here. President Obama’s responses can be found here. You can find the responses of the candidates for congressional seats by searching here.

Starting in 2006, Research!America has also been collecting and posting the responses of the sitting members of Congress to these types of questions, on their Your Congress – Your Health website. It is worth noting the questions on the survey have changed over the years and some of the responses on the Your Congress – Your Health page are in response to questions that are no longer a part of the survey. For reference, you can find Congressman Ryan’s answers (submitted in June 2007) here. President Obama’s answers from when he was in the Senate (submitted in July 2007) can be found here. Vice President Biden did not respond the survey while he was still serving in the Senate.

You can find more information about Research!America on their website, here. You can follow Research!America on Facebook, here, and on Twitter, here.

CancerVotes.org

In recognition of the fact that cancer will kill more than half a million people in the United States this year alone, CancerVotes was started by the American Cancer Society’s Cancer Advocacy Network (ACS CAN) to help educate both the public and the candidates about the actions that lawmakers should take to make fighting cancer a national priority. As Chris Hansen, the president of ACS CAN, puts it:

“While we have made great progress against cancer, the disease continues to kill 1,500 people a day in this country. Lawmakers have the power to make decisions that directly impact the lives of cancer patients and their families, which is why it is important that the public understands where candidates for every office stand on issues critical to fighting and preventing this disease.”

As part of their work, CancerVotes presented Governor Romney and President Obama with four questions addressing the most pressing issues for cancer patients and their families prior to the first televised presidential debate. The candidates’ answers to these questions were then posted on the CancerVotes website, and can be viewed here under the title “US President Voter Guide”. The four topics covered in this guide are: the role of the government in leading the fight against cancer, cancer prevention, access to care, and protecting citizens from the dangers of tobacco consumption. The answers from each candidate are again presented side by side for easy comparison.

You can find more information on ACS CAN on their website, here. You can also follow ACS CAN on Facebook, here, and on Twitter, here. You can also follow CancerVotes on Twitter here.

I hope that everyone finds these resources informative and helpful as you all make your way to the voting booth on Tuesday. You are all going to vote, right?!

 

Thyroid Cancer Awareness Month!

Thursday, September 27th, 2012

September was a busy month full of cancer awareness observances and I’m not quite done yet!

As I’ve mentioned in the introductions to the other “cancer awareness month” posts that I’ve written, I believe very strongly that even though I identify myself as primarily a breast cancer advocate, it is important for me to have some level of understanding of the other major cancer types. To help broaden my knowledge, I’ve been using the various cancer awareness observances as my guide for which cancers to research and write about. And as it turns out, there are A LOT of them in September. Over the course of the last few weeks, I’ve written posts touching on Childhood Cancer Awareness Month, Blood Cancers Awareness Month, Ovarian and Gynecological Cancers Awareness Month, and Prostate Cancer Awareness Month. Today, to wrap things up, I’m going to write a little bit about thyroid cancer in honor of Thyroid Cancer Awareness Month.

Thyroid Cancer Awareness Month was first initiated by ThyCa: Thyroid Cancer Survivors Association back in 2000. When it was originally founded, it was only a week long observance that was extended for the full month of September in 2003. As ThyCa puts it on their website:

Thyroid Cancer Awareness Month promotes thyroid cancer awareness for early detection, as well as care based on expert standards and increased research to achieve cures for all thyroid cancer.

In my reading, I came across some assertions that due its relatively low mortality rates, thyroid cancer was the “good” cancer to get. Well, that’s just ridiculous. All cancer sucks because all cancer can and does kill people. There is no such thing as a “good” cancer to get. And with the fastest increasing incidence rate of all cancers in both men and women, it’s time to pay more attention to thyroid cancer!

About Thyroid Cancer

Thyroid cancer, following the traditional naming conventions in oncology, is any cancer that forms in the thyroid gland. That part should be pretty straightforward by now. But what exactly is the thyroid gland? Well, the thyroid gland is a small organ at the base of the throat, just below the larynx (voice box) that makes hormones to regulate the rate of metabolism. The thyroid is shaped sort of like a butterfly, with two larger lobes connected by a small piece of tissue called the isthmus. In healthy individuals, the thyroid is a little larger than a quarter and can’t be felt manually through the skin. The thyroid is composed of two primary hormone producing cells:

  1. Follicular cells, which use iodine from the blood to make the not so creatively named thyroid hormone (TH). TH is produced in response to increasing levels of the also not so creatively named thyroid stimulating hormone (TSH), which is generated and released from the pituitary gland. Because TH is required for metabolism, improper levels of TH can have a whole host of side effects. Someone who has too much TH (called hyperthyroidism), for example, often experiences irregular heartbeat, trouble sleeping, nervousness, hunger, weight loss, and feeling to warm. Having too little TH (which is called hypothyroidism), on the other hand, can cause a person to feel slow and fatigued and to gain weight.
  2. C cells, or parafollicular cells as their also called, which are responsible for producing calcitonin, a hormone that helps regulate how the thyroid uses calcium.

Thyroid cancer can develop in either thyroid cell type, giving rise to four major subtypes of thyroid cancers: papillary carcinoma, follicular carcinoma, medullary thyroid cancer, and anaplastic thyroid cancer. Let’s go through each one, one at a time.

The most common subtype of thyroid cancer is papillary carcinoma, which develops from the follicular cells. Because these are glandular cells, this type of thyroid cancer is also sometimes referred to as papillary adenocarcinoma. Papillary carcinomas, which account for 86% of all thyroid cancers, are generally slow growing, although they are prone to spreading into the lymph nodes of the neck. These cancers are usually isolated to only one lobe of the thyroid, although not always. Papillary carcinomas can usually be treated and are rarely fatal.

The second most common subtype of thyroid cancer is follicular carcinoma, which accounts for 9% of all thyroid cancer diagnoses. Follicular thyroid cancer is very similar to papillary thyroid cancer in that both types of cancer originate in the follicular cells and are relatively slow growing. However, unlike papillary thyroid cancer, follicular thyroid cancer generally doesn’t spread to the lymph nodes. Follicular thyroid cancer is most common in countries lacking dietary iodine. The prognosis for individuals diagnosed with follicular thyroid cancer is generally good, although not quite as strong as for those with papillary carcinoma. This is at least in part due to the relatively poor prognosis for the Hürthle cell carcinoma subtype of follicular cancer. Because Hürthle cell follicular carcinomas do not readily absorb radioactive iodine, they are often diagnosed at later stages and are much more difficult treat.

The third major subtype of thyroid cancer is medullary thyroid cancer, or MTC. Unlike the previous two subtypes, MTC develops from the c-cells of the thyroid. MTC, which accounts for 2% of all thyroid cancers, often results in abnormally high levels of calcitonin. MTC is usually slow growing and is treatable if caught before the cancer spreads to other parts of the body. MTCs can be linked to inherited mutations in the RET. This form of MTC, which I’m going to talk about more later in this post, is known as familial medullary thyroid cancer and accounts for 25% of all MTCs.

The most rare form of thyroid cancer is anaplastic thyroid cancer, which accounts for approximately 1% of all thyroid cancers. Anaplastic thyroid cancer also develops in the follicular cells, and is thought to sometimes develop from an existing papillary or follicular cancer. Because anaplastic cancer cells are highly dysmorphic and do not resemble healthy thyroid cells when examined under a microscope, anaplastic thyroid cancer is sometimes described as “undifferentiated” thyroid cancer. Anaplastic thyroid cancer is the most aggressive form of thyroid cancer, rapidly invaded the neck and then spreading to other parts of the body. Because of this, anaplastic thyroid cancer is relatively hard to treat.

Finally, while it is not technically a form of thyroid cancer, I wanted to just briefly write about parathyroid cancer, which is any cancer that develops from the four tiny parathyroid glands located at the back of the thyroid. Parathyroid cancer is very rare (with less than 100 cases occurring in the US each year) and generally results in elevated levels of calcium in the blood due to calcium dysregulation. Parathyroid cancer is much more difficult to cure than thyroid cancer.

While the cause of every form of thyroid cancer remains unknown, there have been a handful of risk factors that have been identified. For as yet unknown reasons, thyroid cancer is three times more common in women than in men. Moreover, women tend to be diagnosed with thyroid cancer at a younger age, with the peak rate of diagnosis for women occurring in their 40s and 50s while the peak rate of diagnosis occurring in their 60s and 70s. Eating a diet that is low in iodine has also been shown to increase the risk of developing thyroid cancer, although due to dietary supplements like iodized table salt, this isn’t generally a concern here in the US. While exposure to radiation can increase your risk of developing cancer in general, radiation exposure seems to be particularly strongly linked to an increased risk for thyroid cancer. This includes both exposure to medical radiation as a child and nuclear fall out from living near atomic bomb testing sites and disasters such as the meltdown of the Chernobyl nuclear power station. Finally, there have been a number of genetic mutations linked to the various subtypes of thyroid cancer, which I’m going to talk about in the next section.

The Genetics of Thyroid Cancer

There are two primary types of genes that, when mutated, can result in cancer:

  1. Oncogenes: These are genes that promote growth and cell division. These types of genes are usually turned “off” and are only switched on under highly regulated circumstances. When an oncogene becomes mutated, it becomes permanently turned on (and in some cases turned way up!), resulting in uncontrolled cell growth and division.
  2. Tumor suppressor genes: These are genes that are normally responsible for turning off the oncogenes and stopping cell growth and division before it gets out of control. When tumor suppressor genes become mutated, the off switch essentially is broken, allowing cells to continue growing and multiplying. The rate of cell growth and division isn’t higher, it’s just that the stop light is busted. As a result, mutations in tumor suppressor genes generally result in less aggressive forms of cancer.

Different cell types in the body seem to have certain genes that are more vulnerable to cancer-causing mutations than others. These mutations can be either inherited (meaning you were born with a bum form of the gene) or acquired (meaning you picked up that damage at some point during your life). Cancer due to inherited mutations is known as familial cancer and cancer that is due to acquired mutations is known as sporadic cancer. One of the great challenges in cancer research, then, is to identify both the vulnerable genes associated with each cell type (and therefore associated with each cancer type) and to identify the source of the mutations in those genes. In the case of thyroid cancer, and especially MTC, we actually have uncovered the answers to a few of these genetic questions.

The primary gene that has been associated with thyroid cancer is the gene RET. The mutated form of RET is the oncogene PTC. Acquired mutations in RET have been found to play a role in some papillary thyroid cancers as well as in approximately 10% of sporadic MTCs. Inherited mutations in RET, though, underly almost all cases of familial MTC. Nearly everyone who inherits a mutated form of RET ultimately develops MTC. As a result, if someone has a strong family history of MTC, many doctors will recommend genetic testing and potentially prophylactic removal of the thyroid as a means of preventing thyroid cancer.

Other oncogenes that have been associated with thyroid cancers include:

  • BRAF (oncogene) – mutations in BRAF have been associated with 30-70% of papillary thyroid cancers
  • NTRK1MET (oncogenes) – less common than BRAF mutations, mutations in these two genes have also been linked to papillary thyroid cancer
  • RAS (oncogene) – mutations in RAS have been linked to follicular thyroid cancer
  • p53 (tumor suppressor gene), CTNNB1 – mutations in these two genes have been linked to anaplastic thyroid cancer.

Hands down, the most important breakthrough in cancer research has been the recognition that cancer is ultimately a disease caused by genetic mutations. While we still have a lot of questions still to answer when it comes to the genetics of cancer, seeing how far we’ve come in understanding the genetic basis of thyroid cancer gives me hope that those elusive answers for all cancers are closer to being discovered than ever before.

The Statistics

It is estimated that 56,460 people will be diagnosed with prostate cancer in 2012, with 43,210 of those diagnoses occurring in women. 1780 people will die of thyroid cancer in that same time period. 97.5% of all people diagnosed with thyroid cancer live at least five years following initial diagnosis. One in 97 people will be diagnosed with thyroid cancer at some point in their lifetimes. The NCI allocated $16.2 million (or 0.32%) of their budget for thyroid cancer research in 2011, the most recent year for which those statistics were available.

Recommended Resources

If you would like to learn more about thyroid cancer, I highly recommend reading through the NCI’s web pages dedicated to thyroid cancers, which can be found here. Their “snapshot” report on thyroid cancer is particularly informative, especially the section discussing recent research investments and findings. I also found the American Cancer Society’s Learn About Cancer: Thyroid Cancer section to be very useful. All of the statistics cited in the post were from the Surveillance Epidemiology and End Results (SEER) fact sheet on thyroid cancer, which can be found here. These webpages were my primary sources of information for this blog post.

The American Association for Cancer Research recommends ThyCa: Thyroid Cancer Survivors’ Association for additional thyroid cancer advocacy and patient support information. I also recommend the Light of Life Foundation for more information about thyroid cancer in general and to learn how you can get more involved in advocating for thyroid cancer research.

As with all of these cancer awareness posts, I hope that everyone reading this found it helpful and informative. I know I learned a lot researching it and will be a more effective cancer advocate for it!

Note: While I am a biomedical scientist, I am not considered an expert (medical or otherwise) on thyroid cancer. This post, as with all of my “awareness month” posts, is not meant to be an in depth review of thyroid cancer. Rather, I only wanted to provide a brief overview of thyroid cancer in order to help further the larger cancer community’s awareness of this common cancer. Moreover, while I provided links to a number of thyroid cancer organizations at the end of this post, I have not researched these organizations to the extent that I do for my “Spotlight On” series of posts. Until I can research them further, I am not explicitly advocating financial donations to these organizations (although I certainly won’t advise you against it either should you find them worthy!). Instead, I am recommending them here because each organization is a well respected leader in these specific areas and is considered a reputable source for further information on thyroid cancer.

Prostate Cancer Awareness Month!

Tuesday, September 25th, 2012

Pushing on with my series of cancer awareness months, today I’m going to be writing about prostate cancer in observance of Prostate Cancer Awareness Month. After writing long posts for Childhood Cancer Awareness Month, Blood Cancer Awareness Month, and Ovarian/Gynecological Cancer Awareness Month, this post is hopefully going to be a bit more concise. However, that doesn’t mean prostate cancer isn’t as important as these other cancers. In fact, prostate cancer is the most common cancer in men outside of non-melanoma skin cancer and is the second leading cause of cancer death in men. So as a cancer advocate, I think it’s important to learn a bit more about this very common form of cancer!

About Prostate Cancer

The prostate is a gland within the male reproductive system that is located in front of the rectum and just below the bladder, where it surrounds the urethra. The prostate is responsible for producing the liquid component of the seminal fluid that helps to carry the sperm out of the body as part of the semen. The prostate grows rapidly during puberty in response to a testosterone derivative called dihydrotestosterone (or DHT). The healthy adult prostate is generally the size of a walnut and does not continue to grow larger with age, although a variety of conditions can result in an enlarged prostate. The most common of these conditions is called benign prostatic hyperplasia (or BHP), which generally only results in serious medical complications when the enlarged prostate begins to squeeze and constrict the urethra.

Prostate cancer, then, is any cancer that develops in the tissues of the prostate. Almost all prostate cancers are adenocarcinomas; that is, cancers that develop from the glandular cells of the prostate. Other (very rare) subtypes of prostate cancer include sarcomas (soft tissue cancers), small cell carcinomas, and transitional cell carcinomas. It is important to note that BHP is NOT a form of prostate cancer. While some prostate cancers can grow and spread very rapidly, the majority of prostate cancer grow incredibly slowly. These slow progressing cancers are often present within the prostate for years to decades before they begin to have any kind of symptomatic effects on the individual harboring the cancer.

While prostate cancer is not known to be caused by HPV infection, the slow growth of prostate tumors results in a long precancerous stage that is similar to that seen in cervical, vaginal, and vulvar cancers. These precancerous changes are known as prostatic intraepithelial neoplasia (or PIN) and can be classified as either high- or low-grade PIN. It is estimated that nearly half of all men will develop some degree of PIN by age 50. Men with high-grade PIN have a 20-30% chance of harboring prostate cancer at another site within the gland. The relationship between low-grade PIN is much less clear and may not be related to prostate cancer at all.

The primary risk factor for prostate cancer is age, with two-thirds of all prostate cancers being diagnosed in men over the age of 65. Prostate cancer is very rare in men under the age of 40. Certain races also appear to have a higher risk of prostate cancer. For example, prostate cancer is more common in African American men, who are also twice as likely to die from the disease. The reason for this increased risk is unknown at this time. A family history of prostate cancer is also linked to a higher risk of developing prostate cancer, with 5-10% of prostate cancers having a known genetic basis. Interestingly, while mutations in the BRCA1 and BRCA2 genes are most commonly associated with an increased risk of developing breast and ovarian cancer in women, mutations in these same genes also appear to be associated with an increased risk of prostate cancer. Finally, it appears that a diet high in red meat and dairy and low in fruits and vegetables may lead to an increased risk of prostate cancer, although the specific components of that diet that underly this increased risk are unknown.

Prostate Cancer Screening

Because there has been a lot of confusion surrounding prostate cancer screening tests, I felt like a section dedicated to the topic was warranted. There are currently two methods for screening for prostate cancer that are generally used in tandem:

  1. The prostate specific antigen (PSA) blood test, which detects elevated levels of the prostate-produced substance PSA in the bloodstream. A healthy prostate will generally (but not always) produce PSA levels between 4ng/ml of blood and 10ng/ml of blood. Men with PSA levels in this range have a 1-in-4 chance of harboring prostate cancer, while men with PSA levels above 10ng/ml have a greater than 1-in-2 chance of harboring prostate cancer. It is important to note that low PSA levels do not mean that a man is cancer-free; rather, approximately 15% of men with PSA levels below 4ng/ml are found to have prostate cancer on biopsy.
  2.  The digital rectal exam (DRE), which is a physical examination in which the doctor manually inserts his fingers (or digits) into the rectum to directly check the prostate for changes that may be related to cancer. DREs are generally used to confirm or dispute PSA test results.

These tests have unequivocally been shown to find more prostate cancers, especially in the early stages of the disease, than would otherwise be diagnosed without regular screening, resulting in a significant decline in the death rate from prostate cancer since their implementation. So why is regular screening for prostate cancer not recommended for every man over the age of 40? Well, it’s complicated. Let’s try to sort through it all.

First and foremost, while the PSA and DRE tests are good at detecting cancer, the range of biological variability inherent in the prostate (and the levels of PSA produced by it) means that they can also be inaccurate. Some men have very low PSA levels even in the presence of cancer, resulting in false negative tests. Otherwise healthy men may have elevated PSA levels due to a host of other, non-cancer, conditions, resulting in false positive tests. And the DRE suffers from anatomical limitations, again resulting in a number of inaccurate test results. So while these screening tests can be useful, they are by no means ideal.

Moreover, as noted above, prostate cancer grows VERY slowly. Many otherwise healthy men are walking around with undiagnosed prostate cancer that due to its slow rate of progression, will never cause them medical problems during their lifetimes. Regular screening, then, leads to what many in the medical community consider to be an overdiagnosis of prostate cancer. While many of these men would likely opt to treat an asymptomatic cancer should they become aware of it, the reality is that a large portion of those treatments are medically unnecessary. Ultimately, there is a growing belief that because the side effects of treating prostate cancer can have a significant impact on a man’s quality of life (much more so than the cancer ever would!), the benefits of identifying and treating these cancers in their earliest stages are not sufficient to warrant those risks for the majority of men.

In May of 2012, the United States Preventive Services Task Force (USPSTF) updated their recommendations for prostate cancer screening. The USPSTF currently does not recommend PSA screening for any men, stating that there is “moderate or high certainty that the service has no benefit or that the harms outweigh the benefits”. You can read their full report here.

The Prostate Cancer Foundation strongly disagreed with the USPSTF recommendations, and summarized both their response to the USPSTF and their position on prostate cancer screening here. They also noted, in this synopsis of the prostate cancer screening debate, that, “in contrast [to the USPSTF], physician-led groups, such as the American Society of Clinical Oncology and the American Urological Association, maintain that PSA screening should be considered in the context of a man’s life expectancy and other medical conditions.” They further note that “most experts agree that there is no role for PSA screening for men expected to live less than 10 years”.

The official position of the American Cancer Society on prostate cancer screening is in agreement with the physician-led groups cited by the Prostate Cancer Foundation. Specifically, they state that:

At this time, the American Cancer Society recommends that men thinking about prostate cancer screening should make informed decisions based on the available information, discussion with their doctor, and their own views on the benefits and side effects of screening and treatment.

The ACS specifically recommends that men of average risk for developing prostate cancer and who otherwise have every reasonable expectation of living for at least another decade should discuss screening with their doctors starting at age 50. Men of above average risk (i.e. African American men, men with one first degree relative with prostate cancer) should start having these discussions at age 45 and men of high risk (that is, men with multiple first degree relatives with prostate cancer) should start having these discussion at age 40. For men who choose to undergo regular screening, the ACS recommends that men with PSA levels below 2.5ng/ml have follow up tests every two years while men with PSA levels above 2.5ng/ml should have follow up tests annually. Men should make decisions about biopsies and additional treatments based on marked and persistent changes in these test results in consultation with their doctors.

The Statistics

It is estimated that 241,740 men will be diagnosed with prostate cancer in 2012 and that 28,170 men will die from the disease. 99.2% of all men diagnosed with prostate cancer live at least five years following initial diagnosis, primarily due to the slow rate of progression of these cancers. One in six men will be diagnosed with prostate cancer at some point in their lifetimes and one in 36 men will die from the disease, making prostate cancer the most common non-skin cancer in men and the second leading cause of cancer death. The US spends an estimated $9.9 billion on treating prostate cancer annually. For comparison, the NCI allocated $300.5 million (or 5.9%) of their budget to prostate cancer research in 201o, the most recent year for which those statistics were available.

Recommended Resources

If you would like to learn more about prostate cancer, I highly recommend reading through the NCI’s web pages dedicated to prostate cancers, which can be found here. Their “snapshot” report on prostate cancer is particularly informative, especially the section discussing recent research investments and findings. I also found the American Cancer Society’s Learn About Cancer: Prostate Cancer section to be very useful. The Prostate Cancer Foundation’s section on prostate screening recommendations, which can be found here, summarizes this complicated topic very well. All of the statistics cited in the post were from the Surveillance Epidemiology and End Results (SEER) fact sheet on prostate cancer, which can be found here. These webpages were my primary sources of information for this blog post.

If you would like to read more about the current prostate cancer screening recommendations of the USPSTF, you can find that information here.

The American Association for Cancer Research also recommends the following prostate cancer advocacy and patient support organizations:

Finally, while they weren’t listed on the AACR website, I also recommend the Prostate Cancer Foundation for more information about prostate cancer in general and to learn how you can get more involved in advocating for prostate cancer research.

I hope that every reading this found this informative. I know I learned a lot researching it and will be a more effective cancer advocate for it!

Note: While I am a biomedical scientist, I am not considered an expert (medical or otherwise) on prostate cancer. This post, as with all of my “awareness month” posts, is not meant to be an in depth review of prostate cancer. Rather, I only wanted to provide a brief overview of prostate cancer in order to help further the larger cancer community’s awareness of this very common cancer. Moreover, while I provided links to a number of prostate cancer organizations at the end of this post, I have not researched these organizations to the extent that I do for my “Spotlight On” series of posts. Until I can research them further, I am not explicitly advocating financial donations to these organizations (although I certainly won’t advise you against it either should you find them worthy!). Instead, I am recommending them here because each organization is a well respected leader in these specific areas and is considered a reputable source for further information on prostate cancer.