What Do Mammography Guidelines Mean for You?

As women, we are inundated with new information on healthy living and disease prevention. We take this all in, but may still be asking: What vitamins should I take? How often should I floss? Does that new mole look strange? And, as we all know, our breast health is no different. You’ve probably heard that you should do a self breast exam monthly and talk to your doctor about annual mammograms when you turn 40, if not earlier. The medical profession followed those guidelines for years because, after all, isn’t early detection the key to cancer prevention?

It’s no surprise then that the U.S. Preventive Services Task Force* (USPSTF) 2009 report on mammography screening caused quite a stir and a lot of confusion. Based on its review of the most current research, the panel revised previous guidelines so that mammograms are now recommended every two years beginning at age 50 for women of average risk. It also questioned the efficacy of doctors showing women how to perform self-breast exams as a method of early detection.

While the USPSTF recommendations on screening mammography, clinical breast exam and self-examination do not directly impact the young breast cancer survivors served by Young Survival Coalition (YSC), we always carefully review recommendations of such significance. Although mammograms are not perfect and often produce false positives in young women, the evidence has clearly shown that they are effective in older women and should be available for all women for whom such screening is appropriate. Further, the Task Force’s recommendations deal only with average-risk women, not screening in higher-risk women and looking at residual breast tissue of young and old survivors.

As for YSC’s population of young women, the debate reminds us that better screening tools are urgently needed for all risk levels. Mammograms have been found to be an ineffective screening mechanism for women under 40 because their breast tissue is dense. And while over 13,000 women under 40¹ in the United States will be diagnosed with breast cancer this year, there is still no effective screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly lower than for their older counterparts, and the disease is often detected at later stages and is usually more aggressive.

Taking all of that into consideration, medical professionals, researchers and advocates remain frustrated by early detection of breast cancer for all women and specifically those under 40. Accordingly, YSC urges young women to do what YOU can to become familiar with your breasts and bodies. Know your own personal risk factors for breast cancer, be aware of the signs of breast malignancies and promptly consult with your health provider if you have any health concerns. You are your own best advocate!

¹American Cancer Society, Surveillance Research 2011.
*The USPSTF is a panel of independent experts who analyze the most current research on evidence-based prevention and establish guidelines based on this review: http://www.ahrq.gov/clinic/uspstfix.htm.
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Categories: Guest Bloggers

We Are Part of a Larger Community

There are over a quarter of a million women living in the United States today who were diagnosed with breast cancer before their 41st birthday. This is a lot of young women who have heard the words, “You have breast cancer,” way before they ever thought they could get it. However, when you consider ALL cancers according to Surveillance, Epidemiology, and End Results (SEER) data put out by the National Cancer Institute (NCI), it is estimated that more than 1.6 million people will be diagnosed with cancer in one year, and of that awful total, 9.2% will be under the age of 44. Meaning around 150,000 young adults and kids will be diagnosed with cancer in one year! This just plain sucks!

The point is, while YSC is a very special community just for women who are (or were) diagnosed with breast cancer before their 41st birthday, a larger young adult cancer community exists and we all work together to support each other as we learn to live with cancer.

While the challenges that come with facing a breast cancer diagnosis might be different, the issues around nutrition, careers, insurance and fertility are felt by all young adults no matter what type of cancer they are diagnosed with.

As a young survivor myself, I’ve learned a great deal from this larger young adult cancer community, since being diagnosed two years ago. I consider myself a part of the Stupid Cancer family and have learned so much from this amazing group of young survivors across the country. I attended the OMG! Cancer Summit for Young Adults this past spring in Las Vegas and was reminded how much we all have in common as we struggle to find our “new normal.”

For those of you who live on the East Coast, Stupid Cancer is hosting OMG2012/east, a smaller, one-day conference in New York City on September 15. It’s free for all young survivors but space is limited, so if you are interested in taking an active role in our larger young adult oncology community, this is a wonderful way to be reminded that you are not alone (which we all need every once in a while!). There are a lot of us out there striving to survive with style, determination, strength and even a sense of humor.

If you are planning to attend the OMG2012/east, please shoot me an email with your mailing address, so we can send you a YSC pin to wear so you can represent all the young women with breast cancer in our community!

YSC is about ensuring that all young women diagnosed with breast cancer are empowered, educated, and supported throughout every phase of their experience. I believe that in order to do this properly, I have a responsibility to encourage everyone that wishes to be a part of the overall young adult cancer community to do so.

We are all in this together, as we try each and every day to define and navigate our “new normal.”

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You Want Me to Eat THAT???!!!

“What in the world are we supposed to eat while we train to ride 200 miles?” I’ve heard this question time and again from the many women I know who are doing Tour de Pink for the first time to take their bodies back from cancer.

I had the unfortunate experience of learning what it felt like to have my body run out of fuel on a bike ride recently. This experience is often referred to by cyclists as “bonking” or “hitting a wall.” No matter what cute name you give it – it sucks.

So, this is how I understand it: We are supposed to eat a big breakfast before we go on a long ride, which is counter-intuitive from everything we were taught as kids. Remember having to sit by the pool and wait an hour after eating lunch? And now they’re telling me I’m supposed to eat a large meal before I exercise … Ok, strange, but I’ll go with it.

You are also supposed to eat EVERY HOUR. Deciding to eat every hour would be fine with me if I could stop and enjoy a nice meal. But that’s NOT what this means. You are supposed to eat something WHILE you are riding, every hour. Very different.
Again, it really contradicts everything we learned as children. But, I don’t want to repeat myself.

I’ve also found that everyone seems to have a different magical food choice for these on-the-go meals. Some people keep it real with a granola bar they keep in their jersey pocket. Other people go to the extreme with this substance called GU. It comes in a pouch and has the consistency of slime – and you’re supposed to eat it willingly every hour.
I’ve been told that after a long ride you should eat protein and drink a lot of water. I understand a beer is also fine since it has calories, which makes me happy.

Back to my unfortunate experience of learning the hard way the importance of keeping your body fueled …. I “bonked” on a 30-mile ride and, thank God, was surrounded by experienced riders. I had no idea what was happening to me … the next thing I knew they were shoving this GU stuff down my throat. I wasn’t happy at first, but then I felt my senses starting to come back. I thanked the owner of the GU for sharing his magical jello shot with me.

My plan is to try the GU Chomps since the chomps seem to be more like eating gummy bears (more my style) … and maybe a granola bar … ‘cause going old school is just more fun sometimes.

Any other ideas on fuel for us newbie cyclists?

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Categories: Taking my Body Back

A Letter to Family & Friends About My Journey – Part II

Pink EelephantThe following is the second of four letters that I wrote to my friends and family immediately following my breast cancer diagnosis and surgery:

Letter # 2
October 25, 2010
A letter to my friends and family

Please forgive the long lapse since my last update. Life seems to be happening so profoundly fast these days that I lost track of time. Blame it on the pink elephant!

A special thank you to all of you who have emailed, called, texted and written to check in during the past month. It is your continual support and love that makes every day that much easier. Each day I feel as if I am taking each step with you all cheering “YOU CAN DO IT … KEEP GOING!” Some days the steps are tall and steep and all of you together raise me up so I can reach each step and keep going. Thank you from the bottom of my heart.

During the past two months I have been faced with challenges, fears and emotions that I didn’t expect. But with each step, something profound always appears that takes my breath away – right in the midst of the chaos. Some blessings or occurrences I might have otherwise missed. Here are a few:

•    I’ll never forget my mother sitting next to me in bed talking to me for hours and hours over the last six weeks … it’s become one of my favorite parts of this journey.
•    The generosity of total strangers that has shocked me day after day – bringing me to tears of happiness and restoring my faith in humanity (too many acts of kindness to list them all).
•    The strong and magnificent breast cancer survivors I’ve met who give me hope and fill me with strength – these women are my true angels.

On the morning of October 7, (2010), I went in for my second (and unexpected) surgery to remove seven more lymph nodes from under my right arm. After only 48 hours of being surgical drain free, I was home with another surgical drain (ugh!), more stitches, and back in bed – with a 400-pound pink elephant sleeping comfortably on my chest.

A week later we happily learned that all seven lymph nodes came up negative for cancer!!! Yahooooo! We also learned I was negative for the BRCA gene mutation, which meant my mother and I being diagnosed seven months apart doesn’t appear to be caused by a genetic mutation (well, at least one that’s currently been identified). Go figure!

So what is next for my pink elephant and I??? Are we done??? Unfortunately it does not appear so.

Since two of the lymph nodes from my first surgery tested positive for cancer, I have to begin a “treatment regimen” to ensure that (1) the cancer has not spread to other parts of my body and (2) that it never comes back! Yes, it means the other “C word” … CHEMO!!!!

I think chemotherapy is almost as feared and misunderstood as the word cancer. So, over the last two weeks I have been educating myself and gained a basic understanding of what is ahead of me. I met with one oncologist (doctor who determines and manages your “treatment” from start to finish) and am meeting with another one next week, for a second opinion. My guess is that sometime around the end of November I will begin chemo … but this won’t be settled for another week or so.

Overall I am doing fine. Healing nicely and getting stronger every day. Jeff and my parents continue to be rocks of encouragement, love and support, which I’d be lost without. I’m not going to lie – some days are really rough – but who in life doesn’t have tough days?

So, that’s the update. No final plan as of yet, but it’s coming together. My pink elephant and I continue to dance together every day – sometimes she leads, sometimes I do – but we have bonded and will continue to move forward.

I’m not sure where this road will lead me, and in all honesty I am still trying to figure out how I even ended up on this road in the first place … but your road is your road, and life is about turning lemons into lemonade … all while carrying a 400-pound pink elephant.

Love,
Jen

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Categories: YSC SYNC - Survivors

Cycling Can Be Beautiful

As a new rider just at the door of the house we call cycling, I currently only have one cycling outfit.

This is an issue since I’ll be riding for three days in a row for Tour de Pink. Obviously, I need more than one outfit … but what to buy? And why is it so expensive?

During the last six months I’ve been asking all the other female cyclists I meet what they wear. I’ve heard a variety of responses. I’d thought I’d share a few recommendations, for those of you experiencing the same conundrum:

Terry (http://www.terrybicycles.com/) has become one of my favorite sites to browse through. It’s a Vermont-based company dedicated to getting more women riding bicycles — comfortably, safely and beautifully. Beautifully is the key word … let’s be honest, bike shorts are a challenge for most women. I purchased my riding “skort” from this company, and I’ve been incredibly happy with it. Thank God, since it’s the only thing I own!

Sheila Moon (http://store.sheilamoon.com) is another very cool website. It’s based in San Francisco, so of course it’s cool (I grew up in the Bay Area)! I have not purchased anything from Sheila Moon yet, although I have my eye on a few skorts I’ve seen on its site.

Team Estrogen (http://www.teamestrogen.com/). Besides having a great name, it has a great slogan, “Where style meets the road.” Come on — how cool is that? It has a huge variety of skorts and cute tops I’m looking at. It’s not 100% cycling, so I’m a little cautious about ordering skorts from the site since the chamois pad in the shorts is soooo important.

Bike Jane (http://shop.bikejane.com) is also a good one to bookmark (says the girl who owns ONE biking outfit). I like its selection and am pleased not to see those awful shorts everywhere.
These are my suggestions — does anyone have any others?

I am going to have to cough up some cash soon and start buying at least two more pairs of skorts and cycling jerseys … and probably another pair of socks!!! That’s all I need and then I’ll be rolling in style … my own style.

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Categories: Taking my Body Back

A Letter to Family & Friends About My Journey – Part I

Letter #1
October 5, 2010
A letter to my family & friends

Pink EelephantPeople have said for centuries that if you look hard enough you will see that the world is made up of love, hope, happiness and amazing blessings every day. I have always tried to be a person who looks for those small moments (when they randomly pop up). Until one week ago, that is how I would have defined myself. That’s all changed.

After being diagnosed with breast cancer at the age of 36, I’d now define myself as someone who has been blessed to see the world in a completely different way. I now know that this world is made up of the most amazing, kind, loving, brave and brilliant people, who perform blessings and acts of kindness ALL THE TIME. These are not small moments that pop up (as I once believed) — they are everywhere, and they are for everyone.

Over the last week, so many of you have emailed, called, texted, emailed again, called again, texted again — over and over — with a single message, “We are thinking of you, Jen.”

I felt every single one of you — every single time. I have never in my life felt humanity wrap itself around me like it did (because of all of you) and say “you’ll be okay” … and because of that and because of all of you … I am doing well.

I came home from the hospital after my bilateral mastectomy surgery last Wednesday around noon with a huge appetite (not surprising) and went back and forth between naps, eating, small outings outside and more naps. The best way to describe how I felt during the past week is as though a huge pink elephant was sitting on my chest with no intention of leaving, nor losing any weight.

But, thanks to my wonderful parents and my beyond-amazing husband … my pink elephant and I began a dance of recovery together. Some days the pink elephant had the upper hand, and some days I did … but we moved slowly together in unison.

Today is an important day — today is the day that my drains were taken out. For those of you who don’t know what surgical drains are — God bless you and I pray you NEVER find out. For those of you who do know — say a cheer out loud for me because all I can do is cry in happiness that those God-awful things are gone. (I think the pink elephant even did a celebratory dance today.)

And to all of you — I could feel your wishes, prayers, cheers and words of encouragement from all around the world. For that, I will be eternally grateful. I am doing well. I feel okay. The pink elephant and I have become friends.

I love you all, thank you.

If I can leave you with one thing … look for those blessings. They are everywhere … trust me … I can see them now.

Love,
Jen

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Categories: YSC SYNC - Survivors

We Are 1 YSC

1 YSC: Face 2 Face.It is important to remember where you come from — but it should not define who you will be. This is a statement that is easy to write — but much harder to accept when faced with change.

YSC conducted an Affiliate Summit this past weekend that included representatives from all of YSC’s affiliates around the country.

I was in awe of these outstanding men and women — who have dedicated their lives to the success of YSC. So many of them have built strong communities of volunteers in their hometowns to support our cause. YSC is a national organization because of their hard work, dedication and drive.

However like all great things, YSC needs to evolve in order to be successful and keep up with the changing times. We are expanding in order to reach more young women affected by breast cancer throughout the country and ensure they feel supported and empowered. No matter where they live. No matter who they are. No matter what they do.

No one will ever forget the outstanding work our YSC volunteer leaders have done … their efforts will serve as the foundation for what we will do going forward.

Each of us has a voice and a passion for our movement … and the YSC volunteers that I’ve met around the country are some of the smartest, most caring and compassionate people.
If you have volunteered for YSC over the years in ANY capacity … I thank you.
And for all of the amazing volunteers who participated in the Summit this weekend … I thank you.

We all have a choice in how we look at opportunities presented to us. I can’t wait to see where the volunteers take the future of YSC … based on what I witnessed this past weekend, I think it will exceed my greatest expectations.

Remember: the past doesn’t define us … it only acts as a guide as we choose who we will become together.

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Wigged Out!

Wigged Out – Tina’s Wig Boutique

My first question to my doctor after being told I had breast cancer at the age of 34 was, “Will I lose my hair?” … not “Will I lose my life?” Seems silly now after everything else I’ve faced on this journey. My husband, Scott, said “Really, you are willing to trade your life just to keep your hair?” No, I didn’t want to do that, but I didn’t want to look ridiculous either. I didn’t want people whispering, “Oh, that’s a wig!”

For many women, hair loss is a part of the fight. I found the wig shopping process to be horrible. Sitting in those wig chairs was the loneliest I’d ever felt. It suddenly hit me that I really had cancer. Couldn’t the wig shop employees see and feel my fear and desperation? I needed help. Where was the compassion?

I became really good with wigs during my journey. I had always been blonde, but cancer gave me the confidence to try new things. I marched into my last chemo session feeling sassy in a red wig and announced to the nurses that I’d decided hair was a waste of time and I would keep my hair short when it grew back and just wear wigs. They all stood looking at me like I was crazy. Was this the same emotional wreck that was so worked up about wearing a wig? Yup, same gal, but different attitude and new perspective.

I will be a six-year survivor this October and I still wear a wig every day. I never thought I could love wigs and I do! I really think they need a new name like “spare hair” or “easy hair.” For me, they’re an accessory. I change my bag, my shoes … and my hair! I love never having a bad hair day and the ability to change styles and colors. I realize that wearing a wig makes the fact that you are going through cancer real, and that some women who experience chemo-related hair loss may opt to not wear a wig; but if you choose to wear a wig, try to look at it as a chance to have an alter ego … Your butt-kicking-cancer ego!

Four years ago I started my own boutique, called Wigged Out because I want other women to have a better experience than I did. I want them to know I’ve been right where they are and to walk out feeling beautiful and confident. My goal is to empower other women to fight their cancer and win — while looking fabulous.

I thought I’d share some things I’ve learned along the way …

In retrospect, I handled the hair loss all wrong. It initially came out 10-15 strands at a time and it gradually got worse. But, once my hair was gone, I stopped crying about it. I put on my wig and felt pretty normal. So, my advice is don’t allow the hair loss to control you. Take control of it and you will feel more in charge and can say, “All right cancer, you messed with the wrong chick!”

Should you get human hair or synthetic? Everyone has a different opinion. Here are some things to consider:

Human hair:
•    Generally more expensive. Quality wigs in this category usually start around $800.
•    Requires daily styling (curling, flat iron, etc.), just like regular hair.
•    Can get split ends (from heated styling tools) that will need to be trimmed.
•    Needs to be washed with a mild shampoo and conditioner every 6-10 uses.
•    Tends to feel heavier and hotter.

Synthetic wig with a monofilament scalp

Synthetic Wigs:
•    Tend to be less expensive ($150-$400 for a nicer one).
•    Are available with a monofilament fiber that looks like a human scalp.
•    Need to be cleaned once a month with shampoo for synthetic hair, but daily you just need to shake it out and pop it on. Do not brush a synthetic wig, only use a wide-toothed comb and never comb it when it is wet.
•    Can be cut to fit your face. Make sure you go to someone with experience cutting synthetic hair. If it is cut wrong, it will stick out in an awkward way.
•    Are heat sensitive. You can’t open an oven, hot dishwasher, cook on a stove or expose it to any type of high heat or steam. If you decide to go with synthetic, it is best not to wear your wig in the kitchen.

 I hope this information is useful. If you need help, I’m happy to answer questions or offer support. Just visit my website www.imwiggedout.com and click on the “Talk to Tina” link.

I wish you well on this journey and please know you are not alone!

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Categories: Guest Bloggers

Car Back!

Participants in first 2012 TdP Metro NY Training Ride:
(from left to right: Jean McLoughlin, Kristin Westbrook, me, Matt Purdue, Ken Barrows, Peter Finder, Michael Dayton, Herb Dershowitz, Kim Jenkins, Mitchell Fink, Natasha Weischenberg, David Cura, Laurie Cohen, Pablo Colon)

Have you ever driven past a large group of cyclists and wondered about the chaos that must be involved in keeping so many people together while juggling traffic lights, moving cars and hills … all while staying together? I have.

Before this spring my thought would have been: “Why spend your precious Sunday being cooked by the sun while your life rests in the balance of two skinny tires?”

However, I have made a commitment to myself to take my body back from cancer by riding 200 miles on a bike, and so I’ve begun my own dance with these skinny tires. Since I have no prior cycling experience (translation: have no control and could easily fall over into city traffic at any moment) my husband and I have been riding in upstate New York surrounded by fields, cows and an occasional woodchuck.

While these first rides have been filled with strenuous hills, the greatest concern is a sunburn — or being hit in the face by a bee. The road is quiet, so you feel one with the bike, the road and the surrounding farmland.

This picturesque experience came to a screeching halt moments (literally) after the start of my first group Tour de Pink training ride. As we came to a busy intersection, I realized I had not stopped at a traffic light yet. I certainly had never ridden in a group of 15 cyclists. There were cars everywhere, bikes everywhere and funny terms being yelled out all around me. If they say life is lived outside your comfort zone — I was more alive during this group ride than I had been in years.

Our group of cyclists moved as one creature, always warning its parts about threats around it. As we rode you would hear “car back!” come from the back and move up past you, each person yelling it out so the next person in front of them could do the same, so that we all knew a car was behind us. Moments later “runner front!” would move backwards through the group the same way.

“Hole!”

“Gravel!”

“Slowing!”

The shouts became a song moving back and forth between the entire group that I had begun to rely on. Everyone around us was taking care of each other. Everyone was part of the whole, no matter where they were in the line.

The amazing cyclists that rode on this group ride with me are angels in my eyes. They took great care of us newbies who were only two years out from diagnosis. They rode slowly beside us, teaching us and creating a space where we felt comfortable.

This is what Tour de Pink is all about. Talented cyclists giving their time and energy to help young women affected by breast cancer, like me, do something they never thought was possible.

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Categories: Taking my Body Back

Do I Really Need To Fall?

So, I have a couple rides under my belt — but that’s nothing to get cocky about. What I don’t have under my belt is my first fall.

I’m still struggling with how to shift gears without making that awful noise that tells every cyclist in a 10-mile radius that you have no idea what you are doing. The last thing I want to worry about is falling! And each time I ride and I don’t fall, the anxiety rises one notch higher.

A few weeks ago, my husband and I were riding up in the Hudson Valley in Columbia County. As we were coming into the final third of the ride, we noticed a foal (baby horse)!

It was so close and so cute … I’ve never seen a foal in real life. We turned around and I decided I wanted a photo … and guess who forgot she was clipped in?

I was so excited about the foal it didn’t even cross my mind that I was attached to my bike … that is, until I was lying on the ground squirming around like a bug on its back!

My first fall!!! Thank God! It wasn’t so bad — although being clipped in while you are laying on the ground is a tad awkward.

As I wrestled with trying to unclip, one of the large horses came to get a better look at me squirming around. The horse must have been curious about my ridiculous bike outfit and wondered why I was lying on the ground with a bike attached to my feet!

I’m sure the horse got a good laugh.

I have been told over and over that “everyone falls” and part of me thought that I would be the one that didn’t. Ha! I don’t think I’ll ever forget my first fall … and I’m happy to know now that it isn’t that bad. It was the horse’s fault!


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Categories: Taking my Body Back