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Misdiagnosed, but not misunderstood

BY GUEST BLOGGER | FEBRUARY 24, 2014

Becky Busch

One of the many unfortunate things about having a rare tumor was that for some time no one was certain what it was. In fact, I was misdiagnosed a couple of times.

The first surgeon that I came in contact with believed it to be esthesioneuroblastoma, which is quite rare. It has affected maybe 800 people in the world. However, it is a slower moving tumor, and he had me convinced that this thing could have been slowly growing for up to five years without me being the wiser.

His plan was to do surgery. I had my first CT scan on a Friday and he wanted to do surgery the following Tuesday. He said he couldn't do a biopsy beforehand because the tumor was in my brain. Being in 'fix it' mode I agreed to it. To sum up: This man, who was very nice by the way, and who happens to be a surgeon, said he could remove the tumor. It sounded good to me. My family flew in the next day and put the kibosh on that plan.

At first I argued with them. I wanted this tumor out of my head, and there is a man (who went to medical school) who says he can do the task, so why not let him.

While I was lying in the ICU that weekend, my family worked tirelessly to come up with a plan to make me listen. Finally, after the relentless efforts of my parents and siblings they made contact with the Anschutz Cancer Center at the University of Colorado hospital and MD Anderson. They believed a biopsy could be done through my nose.

I'll admit that after the biopsy, things became fuzzy for me. While the doctors convened on my case and treatment, my condition got worse. I was hardly able to get out of bed, and the prescription painkillers had me pretty much out of it. So much so that I don't remember the majority of things that happened in this time. I was finally hospitalized at the university hospital, and I began my first chemotherapy treatment. It was a 96-hour infusion of taxol, cisplatin and 5-FU. Nurses practically wore haz-mat suits while administering these toxins into my veins.

After my treatment, a couple weeks later, I started to feel better. A nurse was disconnecting my IV, and she started asking me about my condition. My sister was sitting in the room with me as I answered. I told the nurse it was esthesioneuroblastoma. My sister sat up and interrupted me, "Umm, Becks, you know that's not what you have, right?"

"It's not?"

"No. Don't you remember the doctor giving you the results of the biopsy in the hospital?"

"He did?" Like I said before, things got fuzzy. I didn't even retain important information. "What do I have?" I asked.

"Sinonasal undifferentiated carcinoma," she told me.

"Huh." I paused. "Is that better?" I asked with a ray of hope.

She shrunk in her chair. "No."

It turns out it was a more aggressive tumor. Instead of growing in five years, it grew in five months. It was also more rare, affecting 400 instead of 800, and it was classified as inoperable. They knew that it started in my sinuses and that is was some sort of carcinoma, but the word 'undifferentiated' pretty much meant they didn't really know what it was.

After six chemotherapy treatments and more than six weeks of radiation therapy, the tumor shrunk enough to be removed surgically. After the tumor was completely removed and available for further testing I was officially diagnosed with sinonasal teratocarcinosarcoma. When my surgeon told me the new diagnosis, I again asked, "Is that better?"

"No." Instead of being 1 in 400, I am now 1 in maybe 50-80 people in the world that have ever had it. It is highly aggressive and rare, and now we know that it is a polymorphic cancer, meaning it can affect and travel through blood, tissue and bone. In fact, part of the tumor had actually calcified and turned into bone--and you thought it couldn't get weirder.

Hindsight is always 20/20. If I had undergone that first surgery I most likely wouldn't have survived. Thank you to my family and friends who saved my life. You gave me the tools to live. You gave me a missile to take into a gun fight.

Being diagnosed with a rare cancer can be frustrating because there is not as much information out there on rare diseases. The study groups are small, so the statistics often sound very bleak. When I was looking into sinonasal teratocarcinosarcoma I was reading statistics like 'in a study group of 11 people, 8 died within 1 year. Of those who survived, 70% died within 5 years.' This was not encouraging information.

The support is not the same for those with rare cancers. The lack of support can be as small as not having our own color for a wrist band, and as large as minimal funding for research. There are no official parades, marathons or fundraisers for sinonasal teratocarcinosarcoma or the many other rare cancers out there. If you want those things for rare cancers you have to do it yourself. Sometimes that can make a person feel alone.

Everyone deals with trauma differently. For me I found that the best medicine was laughter. I found something to laugh about every day, and the amazing thing about laughter is that it is contagious. Others around us would open up more freely, and I have even made some lasting friendships from the waiting rooms in the cancer center. When you have a good attitude, you inspire other to do the same. Before you know it you won't feel so alone any more.

Becky Busch was diagnosed with a rare and aggressive cancer several years ago. Since surviving it, she has rediscovered her passion for writing. Among other things, she writes a blog about herself and her own battle with cancer at whoistherealbb.com.

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How to cope when Mama Bear has cancer

BY GUEST BLOGGER | JANUARY 31, 2014

Debbie Woodbury

At the beginning of my cancer journey, I understood what Maya Angelou meant when she said, "There is no greater agony than bearing an untold story inside you."

Once I opened up and started telling my cancer story, I started telling it a lot. After five years, the emotional part of my story has become easier to share - except in one area: My husband and my children. When I talk about them, the same tidal wave of emotion that hit me then hits me again. All I can do is accept and dive into the wave.

It's hard to explain, but anyone who loves doesn't need an explanation. My 20-year old daughter was a newborn when I held her in my arms and first felt it. An overwhelming surge of protectiveness washed over me. In an instant I claimed my primal mama bear fierceness and it imprinted on my psyche forever.

Fifteen years later, the phone rang. Because I was alone when I found out my mammogram was suspicious, I decided to sneak back to the breast center without telling my husband. Of course, I didn't want to go alone, but I put sheltering him over my own best interests. When I came home and told him the truth (and that I now needed a stereotactic biopsy,) I felt horrible about bringing him bad news (and about lying to him by omission.)

Four and a half months later, I had a surgical biopsy and returned, alone, to the breast surgeon's office to hear my diagnosis. When I think back on it now, I realize with some shock that my husband wasn't there because I kept him away (he had gone to every appointment and test since I leveled with him.) Again, I prioritized protecting him above letting him be there for me at a critical moment.

Through the entire diagnostic phase, we kept our 15-year old daughter and 12-year old in the dark until I had a treatment plan. When we finally sat them down, I was glad to tell them I wasn't going to die and would be back to normal after my mastectomy (shows what I didn't know back then.) I remember being shocked at their response, which wasn't good. When I look back now, I realize I had focused so intently on protecting them from bad news that I had deluded myself into thinking I had been successful.

After my mastectomy, I felt extremely isolated. As hard as it was to share bad news about my health, it was even harder to share the emotional fallout of living with cancer. My mama bear wanted to be better, happier and move on with my family, but I simply wasn't able to put cancer behind me so easily.

Now, when I speak with the Pathways Women's Cancer Teaching Project I talk about my children and husband knowing I will tear up because their pain still makes me very emotional. I push on because doctors and nurses need to know how significantly a patient's role as a wife and mother affects her cancer experience.

This is the unspoken burden of women with cancer. We are inseparable from our roles as caregiver, nurturer, confidant and emotional touchstone. We take care of others before we take care of ourselves. Our mama bear instinct is primal and viciously strong and it will over-protect what we care about most in the world - our partners, our children, our parents, our families and our friends.

We can't help it because our overwhelming drive to protect our loved ones, even to the detriment of ourselves, is a force of nature. We're never going to stop feeling and acting on it, but we must come to grips with reality. Even a mama bear needs to take care of herself so she can continue taking care of others.

This is what I learned the hard way and what I now share with you. In addition to your family and friends, build a support network that is there just for you. No one should do cancer alone - and by that I mean without other people who "get it" and are there to support you without needing you to care for them. Putting yourself first once in a while is necessary to healing. And then, when you're a bit stronger, you can get back to being Mama Bear.

Debbie Woodbury is the founder of WhereWeGoNow, a gathering place for survivors creating inspired healing, wellness and live out loud joy beyond cancer. Debbie is the author of You Can Thrive After Treatment and How to Build an Amazing Life After Treatment, a Huffington Post blogger, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathway Women's Cancer Teaching Center, a wife and mother, and a former very stressed out lawyer. Debbie was honored to be quoted in CURE Magazine in Survivor Defined and Seeing Red: Coping with Anger During Cancer. You can also find Debbie on Twitter and Facebook.

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24 Lessons to help savor the joy and heartbreak of life with cancer

BY SUZANNE LINDLEY | NOVEMBER 27, 2013

suzanne lindley blog image

"Life is a series of disastrous moments, painful moments, unexpected moments, and things that will break your heart. In between those moments: that is when you savor, savor, savor." ~Sandra Bullock

As Thanksgiving approaches, I am pulling from the thoughts of Sandra Bullock because life this year has been a series of all these challenges and more. Yet, it has given way to much celebration. There has been disaster in ways that are hard to describe, the pain of my mom's cancer diagnosis and the fear that ensued, the unexpected blessing of stable scans for myself, and heartbreaking loss of friends that were dear.

Life can, and has, thrown some difficult hurdles in my direction. However, there has been a cadence to the way life works and it has been in the breathtaking moments when the world should stand still, with little or no control, that I have felt unknown strength and abundant blessings.

Most of these blessings that I so gratefully enjoy include the muchness of family, special milestones and everyday magic. These days are relished because of the treatments and medical team that have worked so hard to keep me here...and this year to even give me a new smile. I cherish my friendships, too, for it has often been the simple touch, cyber hug or powerful thought that has given me the courage and hope to move forward. So, as I savor the "cancer calm" in the storm of stable tumors, these are some of the lessons for which I am forever grateful.

1. "Love is the answer." Jane and AJ Ali

2. "You are where you want to be." Loretta Baker

3. "Life is a treasure chest. What is your treasure today?" Leon Davis

4. "The bumble bee isn't supposed to be able to fly, and you aren't supposed to survive. But the bumble bee flies and you WILL survive." Jean DiCarlo Wagner

5. "Take a deep breath." Jean DiCarlo Wagner

6. "Hope is dope!" Snoop Dog

7. "Instead of thinking "it could be worse," remember "it can get better!" Desiree Gray

8. "Everyone is terminal; no one more and no one less." Gordon Gwosdow

9. "The footprints of friends will carry you and you have one very special angel watching over you." Russ Howard

10. "Oh Happy Day!" Bonita Jones

11. "Cherish the golden gossamer threads of life." Shirley Laverne

12. "We can make it to the top. We are angels!" Kevin Lebret-White

13. "We are here for each other through good and bad." Vicki Lehman

14. "No one can take away your ability to have hope." Keith Lyons

15. "Life doesn't happen around you, it happens between your own two ears." Keith Lyons

16. "Life is the most precious thing we have." Dalia MacPhee

17. "Hold fast and shine brightly." Brian McLeod

18. "Life is fabulous!" Erica Paul

19. "Talk doesn't cook rice." An old Chinese proverb I first heard from Nancy Roach

20. "If you go outside the box and open up yourself to new experiences, joy is there for the taking." Pam Schmid

21. "We have been blessed to know things others don't yet understand, and our challenge is a great one: We understand our mortality, and we revel in the blessing of every breath we draw and every day we see. Our job is to bring a little heaven to earth, in the form of faith and love." Tony Snow

22. "It's all about hope." Tami Thennis

23. "Find some hope." Shelly Weiler

24. Last but not least, Ronnie Lindley: "It will be OK!"

I am humbled by the rhythm of life; how it ebbs and flows. I am thankful for ALL of you that walk with me through the tragedies and triumphs of each day. You are treasured souls who have shown me that beauty often lies in the midst of struggle. You have helped me to strengthen my resolve. So as you enjoy the days and weeks to come with family and friends, however and wherever that may be; know that I am grateful for you. Happy Thanksgiving from our home to yours.

And with the words of Sandra Bullock, "Savor, savor, savor!"

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Redefining the word "cancer"

BY DEBU TRIPATHY | AUGUST 2, 2013

Debu Tripathy blog image

Can a simple act of a few individuals change how we think about cancer?

Well, not a few, anymore, but a growing choir of voices are now redefining the term "cancer." We have known for a long time that there is a continuum from benign to cancerous growth. We even have names for some of these, such as borderline malignancy of the ovary. In the case of ductal carcinoma in situ of the breast (DCIS), the survival of patients is equal to the general population, but it is often treated with surgery, radiation and tamoxifen.

The Institute of Medicine has called for not just a redefinition of names, but a realignment of the cancer culture of "detect and eradicate." A recent article (Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement) in the Journal of the American Medical Association highlights this problem in cancer screening, where the knee-jerk reaction for any cancer is to treat low- and high-risk cancer with many of the same treatment, therefore exposing everyone to side effects and complications while many derive no benefit--because their chance of dying or having their life affect by their "cancer" was minimal.

Solutions proposed in this article include getting rid of the word "cancer" and using terms like "indolent lesions of epithelial origin"--this may alter behavior both on side of the medical team and the patient. Of course, one cannot just declare a new system into existence.

The medical system must provide safeguards that truly dangerous cancers will be diagnosed and treated appropriately. Even some cases of DCIS can recur as invasive cancer, which can then potentially spread and lead to death. This means more research on prognostic tests – a huge ongoing needed in oncology that involves molecular/biological assays and large follow-up studies to validate these tests. We have a long way to go on redefining cancer, but perhaps starting with labeling changes is at least a symbolic start – but hopefully will be followed by both a scientific and cultural shift.

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Being a “bad” patient

BY ELIZABETH WHITTINGTON | MARCH 7, 2013

Elizabeth whittington blog image
I used to be a model patient; I would be very pleasant, nod my head at everything the doctor told me, whether I agreed or even understood what he or she was telling me. I knew their time was important, so I tried not to ask too many questions and kept my appointments to a minimum.

I went to a specialist today for a minor medical issue, and I noticed that I had become a "bad" patient. Not only did I drink coffee in the waiting room when there was a "no food or drink" sign, I also answered emails on my phone (no cell phones – no exceptions!).

I remembered that I told my dentist that I would only get dental X-rays every other year unless there was an issue. And I told my gynecologist that I would not be getting a baseline mammogram at 35 because I had no risk factors or symptoms. "That's just what we do here," she said.

I also use my phone (no exceptions!) to tape record conversations with my doctor. I guess it's OK since I ask him first. I also ask a lot of questions: could A be related to B? Do I need that CT scan or is there an alternative? Can I get generic? What about X, could my symptoms be related to ____fill in the blank___? And if I think he or she is missing something, I always point it out again.

When I mentioned that I was a "bad" patient, several people told me, "Good!"

One person commented: "Bad" patients live longer! and another reminded me that doctors work for us, so I shouldn't be concerned with being a "bad" patient.

I've heard many a story by cancer patients and survivors who were diagnosed only by being a "bad" patient. And there are those who lived longer because of a treatment or clinical trial they asked about, or received follow up from a late effect that no one believed they had, until they met the right doctor--finally.

Although lighthearted, a friend compared me to Elaine in "Seinfeld." At least I won't have to worry about stealing my medical record to take off the fact that I was "difficult."

You remember the one...

Elaine's medical chart on Seinfeld

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Boldly and courageously

BY SUZANNE LINDLEY | AUGUST 20, 2012

The past few weeks have been laced with emotion. This morning the sadness and fear caught up with me. I stood in the shower and let my feelings unfold as the hot water soothed my body and a rush of tears began to heal my soul. During these summer months two of my loved ones have heard those three terrifying, life-changing words. My mom has been diagnosed with breast cancer and just last week we learned that my aunt has very advanced lung cancer.

The distortion of time and space that accompanies "cancer" has surrounded me yet again, with moments in time hanging like hours on end. Life has been unfolding in a blur. The initial paralysis of shock has subsided into a determined flurry of decision. There have been biopsies, surgeries, consults, results and difficult conversations. With all of them comes the knowledge that life will never again be the same.

A new normal has already started to surface. Office visits and follow ups, waiting rooms and procedures, treatments and side effects, tests and results are quickly becoming routine. How I wish I could shelter those that I love from this strange world of cancer; for the treasure of good health to surround them still.

Since that isn't the case, I am thankful I can help ease some of the unknowns and shine a light as they take the first steps of their new journey. Already, there has been an outpouring of support. How lucky we are to have resources and answers, expertise and friendship at our fingertips. To know that others have been where my family now stands is truly a gift. Together, we will step boldly and courageously toward a cure!

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LIVESTRONG offers parenting with cancer class

BY ELIZABETH WHITTINGTON | JUNE 21, 2012

I received an email this morning from LIVESTRONG about an education session for parents who have cancer. It's available online and in person. Details below:

The June 2012 LIVESTRONG Community Education Class will address the topic of parenting with a cancer diagnosis. Join us on June 28 from 6:30-8pm CST.

Dr. Vaughn Mankey will describe a framework for considering the unique parenting needs of each child during a parent's illness. He will also discuss key principles that parents can use to encourage coping and resilience in children. Class participants will also be able determine when children may need additional support and professional services. Classes are open to anyone affected by cancer (survivors, caregivers, family members, etc.) and are available to participate in person or online! RSVP here.

CURE also recently featured the topic in the Spring 2012 issue: "Honest Discussions Can Help Ease Kids' Anxiety About Cancer."

What has helped you in talking with children about cancer?

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Need to make a cancer decision: call this number

BY KATHY LATOUR | MAY 23, 2012

Hearing the words "you have cancer" should be followed by, "and now we will begin speaking a language you don't understand."

It's more than the medical jargon that makes it hard for us to absorb all the information; it's also feeling like our ability to understand the language we have spoken all our lives now comes at us from the end of a funnel, condensed into a stream of information that is unintelligible in its magnitude and complexity.

But we need to understand, more now than ever. We have decisions to make and everyone is asking us questions about what we want to do, and they want answers now.

Of course, the question is, how can we ask questions about something we know nothing about? It's a problem for every cancer patient. Lots of information and decisions to be made in a language we don't speak.

The Cancer Support Community, a new organization that until last year was Gilda's Club and the Wellness Community, has launched a new program called Open to Options that is designed to help cancer patients go to their appointments with a list of questions that will help them make the informed decisions they need to make.

Because I like to try out any new program that comes along, I called the toll free number for Open to Options at 1-888-793-9355. I was a little disappointed to have to leave a number, but Jim called me back within the hour.

I liked Jim immediately. He had one of those wonderful slow, deep voices that calmed me before we even started talking about the tough stuff. Jim explained that their job on the help line was to empower patients to communicate with their physicians no matter the issue. Jim is a licensed social worker and said many of his coworkers were oncology social workers and that everyone was well trained to work with cancer patients.

He also pointed out that the program was available at the Cancer Support Communities across the country. If you go to their website, you will see where they are located and their phone numbers to make an appointment.

Jim was clearly someone who knew his stuff. He had lots of resources he recommended for different issues. But his goal, he said, was to send patients back to their doctors with a list of questions that were typed up and ready to be answered. He even followed up with them after the visit to see how it went.

Those of us who have had cancer know it can be hard to talk to a doctor. We feel that if we ask a question, it can somehow be taken as a challenge and we don't want them to feel that way. Depending on the physician, some have little time for questions and need to be reminded that the person in front of them is a person with a cancer and not a cancer with a person attached.

Having someone like Jim in your corner can help.

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Fertility takes center stage at SABCS

BY SUSAN MCCLURE | DECEMBER 8, 2011

In an educational session that kicked off this year's San Antonio Breast Cancer Symposium, Teresa Woodruff, PhD, noted that survivors experience depression and anxiety because of sterility. Adult survivors of childhood cancer are often afraid to begin dating because they don't want to have that conversation with someone at an early stage in the relationship but are uncertain as to when to initiate it. Young men and women have the same concerns, but these concerns are heightened among young breast cancer patients.

Fortunately for me, I was already married when I learned that I had cancer. I was also the mother of a wonderful two-year-old boy named Ryan, who remains the best and brightest light in my life. That said, at 35, I was devastated when my oncologist told me that I wasn't going to be able to have more children. I had always thought I would have two or three kids and the thought of Ryan being an only child, with no sibling to grow old with, made my heart ache. It still does.

Lance Armstrong announced publicly that he banked his sperm – that was one of the first public acknowledgements that cancer treatment can cause sterility and patients should do something to preserve their fertility before treatment.

In regards to the logistics of preserving one's fertility, men have an easier time, but not all men have been offered sperm banking. There needs to be better patient navigation in adequate time to ensure that men are able to father future generations. Options for women have been available for some time, but are not always used. Navigation is more difficult – Women have to go from cancer care to reproductive endocrinology and then back to cancer care again which is difficult, and quite honestly, scary and stressful.

Woodruff suggested that patients and doctors know that fertility conversations should happen, but she isn't convinced that all newly diagnosed patients are thinking about fertility, even if it is more widely known. What about you? Did your healthcare team bring it up? Were you given a chance to fully understand your options?

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Score one for the Army of Women

BY ELIZABETH WHITTINGTON | MAY 11, 2011

You may have heard about a study released at the American Association for Cancer Research (AACR) annual meeting on how breast milk could one day be used to screen for breast cancer. What you may not know is how they found these unique participants.

The data presented at the AACR meeting found that epithelial cells in breast milk could help doctors predict breast cancer risk and screen for the disease. One hope, said researcher Kathleen F. Arcaro, PhD, is that by looking at the epigenetic information in these cells, and specifically certain genes, we could screen new mothers for breast cancer simply by examining the colostrum (first milk secreted after birth) -- a potentially inexpensive and noninvasive screening technique.

One interesting point about the study is where did they find their test subjects? You have to admit that the eligibility criteria were pretty unique. The study investigators called for women who either recently had a breast biopsy or were scheduled to have one in the near future and were breastfeeding. These weren't patients looking for a treatment option, and they weren't considered individuals who were at high-risk for breast cancer looking for ways to prevent the disease. They were just average women who want to help further cancer research.

In any other setting, the trial would never have gotten off the ground. With only about 3 to 5 percent of cancer patients involved in clinical trials and roughly a third of cancer clinical trials are halted due to poor enrollment, the fact that this study was able to secure about 250 breastfeeding women who had a breast biopsy (and some women later diagnosed with breast cancer) was certainly a feat.

If you're not familiar with the Army of Women (www.armyofwomen.org), it is a website sponsored by the Dr. Susan Love Research Foundation and the Avon Foundation for Women. It has a goal of recruiting one million women for clinical trials focused on finding the causes of breast cancer and how to prevent it. The website provides a way for researchers to reach out to women interested in participating in these trials. Women who are not currently undergoing breast cancer treatment can sign up on the website and are then notified by email of select clinical trials, allowing them to choose whether to enroll or not.

I heard Dr. Susan Love talk about this trial a couple of years ago at AACR when the study was just getting started. Love said they put the call out for women to join the study and had a great response, with women even offering to undergo a breast biopsy just to join the clinical trial. And once the researcher discovered she had easily reached her goal of 250 participants (which was first believed to be unrealistic), she asked for more.

The trial is still ongoing and enrolling additional women. Here is the information from the website:

The Milk Study: Using Breast Milk to Screen for Breast Cancer and Assess Breast-Cancer Risk

The purpose of this study is to determine if breast cancer and breast cancer risk can be accurately assessed from a breast milk sample. Currently, there is no accurate way to give women information about their personal risk of developing breast cancer. We will use the cells naturally present in breast milk to examine changes in DNA that occur in association with benign and cancerous breast lesions. Learning about the genetic changes associated with both breast cancer and non-cancerous breast lesions will help us develop a way to provide women with information about their breast cancer risk. Using breast milk to screen for breast cancer will reduce unnecessary biopsies among nursing women.

Who Can Participate? You can join the Milk Study if you are:
• Currently NURSING/BREAST-FEEDING a baby AND
• You are either GOING TO HAVE A BREAST BIOPSY in the near future or you HAVE HAD A BREAST BIOPSY in the past.

What Does Participation Involve? You will be shipped a milk collection container, informed consent form, and questionnaire. You will be asked to complete the consent form and questionnaire and to donate about 2.5 ounces of fresh breast milk from each breast. You will put the consent form, questionnaire, and breast milk in a box that will be picked up by Fed-Ex. You will be asked to provide a copy of the biopsy report. Approximately 1 year after sending your breast milk sample, the researcher will contact you to ask about any breast problems you have had in the last year.

You can also read more about the breastfeeding studies here.

It's a pretty unique study and one that will probably produce some interesting results. The fact that Army of Women has been able to generate interest in this study shows we have entered a new era of clinical study. Currently researchers actively look for participants, even paying recruiting companies and advertising firms to find participants. Imagine the money and energy that could be redirected if people, in turn, came to the researcher.

So, bravo to the researchers, Army of Women and all those women who have enrolled in the study. While we commend those of you who run, walk, and raise money for breast cancer research, joining this type of clinical study earns its own reward in the fight against cancer.

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