When I was diagnosed with breast cancer I learned the importance of maintaining a medical checklist. I also learned how little I really knew about my health records and family history. I had to collect information quickly and document each step of treatment and medication.

This information is now carefully filed, and I have told my husband where to locate the information. Each time I visit a doctor and am asked to update my records I am better prepared. I learned that keeping medical records updated for each family member is important, especially when an emergency or major illness occurs.

What you need to record

Compile a permanent medical dossier for yourself and your children be prepared to bring it to doctors’ visits. Here is a list:

• A record of all allergies (environmental, food, medications, materials like latex)
• List of current medications, dosages and frequency taken
• Vitamins or supplements taken and dosages
• History of illnesses and surgeries and dates they occurred
• Family history of major illnesses

Preparing for your doctor’s visit:

Make sure you understand your health insurance plan and bring the necessary identification and paperwork. Here are some things you need to know before walking into the medical facility:

• Do you need a primary care physician referral to see a specialist? If a paper referral is required versus electronic (find out from your carrier), it can take several days to secure. Don’t what until the last minute.
• What is your co-pay for your initial consultations, doctors’ visits, surgery and medications?
• Do you have an out of network plan? If yes, how does it work and what are the limits and guidelines?
• How many medical opinions are required for any major treatment or surgery?
• Are second or third options covered by insurance?
• How are medical emergencies covered?
• Is coverage limited to your region, or can you seek treatment out of state?

Reading the fine print

Dealing with medical expenses and insurance paperwork for reimbursements can add stress at a time when you don’t need more. It is important to read the fine print and to keep every receipt filed.

Your insurance provider should generate an “Explanation of Benefits” (EOB) for every medical claim. The EOB tells you what the insurance carrier has paid the medical facility and what your personal financial responsibility is. Make sure that amount matches the actual bill the hospital or treatment center sends you to pay.

If you see something amiss on either the bill or the EOB, contact your insurance company immediately to inquire. Most insurance carriers allow ninety to one hundred and eighty days for patients to address and dispute claims. It is your right to appeal any claim

File yours and your family’s medical records in a secure place and tell your spouse or partner where they are kept in case he/she needs to step in as a heath care proxy to handle your medical paperwork if you are unable to manage it on your own.

The only thing worse than having a doctor tell you that you have been diagnosed with cancer is telling your children. Just saying the words, “I have cancer” can make you choke. It took me two years to say the words without a struggle.

So how do you share the news calmly to the most precious people in your life?

Think age appropriate when you share the news. A younger child will digest the news differently from a pre-teen or teenager. You may choose to gather the family in a room together or tell each child separately.

Use language they can easily understand and keep the medical explanations simple. Let them know that everyone is a “team” and we are going to win the battle. Tell them you have a great medical team on your side to treat you.

Speak in a calm and reassuring manner. Practice in front of the mirror. It helps to have your spouse or partner with you when you break the news.

Tell them how much you need and value their support and that you will still and always be there for them. It will be a challenge to face and important to plan, prepare and allow for a little down time but never “away time” from their needs.

Allow time to answer their questions. If you are met with their silence, give them a chance to digest the information quietly and tell them you are available to talk at anytime..

Helping your family process the information

After receiving the news, some children may continue on with their daily activities but some may withdraw. Be observant to their behavior and any changes. You may want to inform their school guidance counselor(s)and to ask them be alert for any behavioral changes at school.

Allow your children to express themselves through creativity or physical activities- whatever it takes to get any rage or fear out of their system. Play games together, attend sporting events, movies or shows. Paint; craft, cook, read together; plant flowers- whatever it takes to make their surroundings fun and distracting.

Set aside quality time with your partner or spouse that does not involve “cancer talk” or finances. He/she will be facing your diagnosis as lover, caretaker, family provider and co-parent. That is a lot of weight to juggle. Be sensitive to this and to the fact he/she will need an emotional outlet.

Establish a communications policy

If you are choosing to keep your diagnosis quiet at work or among friends, tell your kids so they don’t share the news with friends. Explain how it is important to you that the news is kept just among family but that they are free to ask you questions and express their feelings with you.

Breaking the news and processing and managing the information is hard. Start with a communications plan that works for you and your family and stick with it to make it a little easier.

On June 13, 2013, the U.S. Supreme Court unanimously ruled that companies cannot patent naturally occurring human genes. This landmark ruling is a giant step forward for women’s health because it breaks down barriers and opens doors for more accessible and affordable testing for the BRCA gene mutation.

Why Is BRCA genetic testing important?

We all carry BRCA1 and BRCA2, both naturally occurring human genes. However, a BRCA mutation, or abnormalcy, can lead to specific cancers. In women these include breast and ovarian cancer. While not all cancers are linked to the BRCA mutation, some women have greater risks.

If you have a family history of breast or ovarian cancer there could be a link to the BRCA gene mutation. The mutation is also more common in women of Ashkenazi Jewish heritage. While my family had no history of breast cancer, my father and grandfathers had prostate cancer and my grandmother had pancreatic cancer, both linked to BRCA gene mutation.

What the ruling means to women

The Supreme Court ruling allows more companies to offer BRCA testing. Until now Myraid Genetics has held a patent on the BRCA gene. The test cost thousands of dollars and was not always covered by health insurance unless a woman was at risk. I was already diagnosed with breast cancer when I took the blood test.

When my test came back positive I chose prophylactic surgery to remove my ovaries and Fallopian tubes and reduce my increased risk of having ovarian cancer. It was a day surgery and laproscopic with an incision in my belly button, so there are no scars.

The ruling means women have more control over management of their health. It means you can decide to take the test and understand your risks. If you test positive you can choose entering a surveillance program, prophylactic surgery or just be more vigilant about mammograms and breast self-examinations.

What it means to your family

Some women fear knowing if they carry the mutation because it can be passed down to your children. Other family members may also carry it and may consider taking the test. As a daughter I would want to know the answer. As a parent I would want to understand what I need to do to inform and protect my children.

Prophylactic surgery is an option but not a requirement although your doctor may recommend it. If you are of child bearing age, you need to decide if you plan to have more children before under going surgery to remove your ovaries. This is something to discuss with your Ob/GYN and a fertility specialist.

Knowing you carry the genetic mutation means you need to make some decisions about reducing risk and prevention. And it means you need to be more attentive about your managing your health. But as a woman and as a parent, shouldn’t you be doing this anyway?

Although it was just a couple of weeks ago when my doctor looked me in the eye and called me cured of the breast cancer that had almost ended my life, I’ve actually considered myself free from cancer for quite some time. When I was diagnosed, Alan and I took a serious look at our lifestyles and our environment and made significant changes that last through today. We share many of our insights on the benefits of healthy living here on DrGreene.com, and we’ve come to embrace our good health and to enjoy our good days.

I fully believe that some of the healthiest people in the world are those who are living with a chronic disease and managing it well. Those of us who have gone through a life-changing threat to our existence have sought out information about the world we live in, the food we eat, the air we breathe… we want to do anything and everything we can to regain and maintain our health. People with diabetes who watch what they’re eating and control their disease with diet and exercise are healthier than most disease-free folks who eat junk food and spend their evenings on the couch. People with asthma who avoid second-hand smoke are exposed to fewer toxins. We survivors of diseases just seem to be more aware of what keeps us healthy and what will make us sick because if we don’t pay attention, the repercussions could be very serious.

Some days I’m really angry about what cancer stole from me. I was breastfeeding one day and, thanks to chemotherapy, two months later I’m in full blown menopause, complete with intense hot flashes. It was insult to injury because I hoped to have another child. During my treatment I opted to do everything I could to keep my breasts because I fully believed I would nurse again.

But the anger about the cancer doesn’t come close to the happiness about the cure. I was diagnosed with stage three inflammatory breast cancer. The chances that I would survive were very, very small. But survive I did, and, as another cancer patient once said to me, “Today is a great day to be alive.”

I started off with one of the strongest Western medicine available, and at the end of my treatment, I was in a very vulnerable position. The cancer was gone, but the first year after treatment has the highest risk of recurrence. And cancer that comes back during this time usually spreads very quickly and is very resistant to more treatment.

I decided I wanted to be as involved as I could in attacking this thing. I found about a trial at Stanford that the coordinators were having trouble finding participants that fit the critera. You had to have been diagnosed with stage three or stage four breast cancer, and you had to be done with treatment with no evidence of the disease. The hard truth is that they couldn’t find many eligible patients because there weren’t many of us who were surviving this disease. When I was first diagnosed Alan tried to find people online with my cancer, and he couldn’t find anybody. He just kept finding memorials for people. So I enrolled in the FGN1 trial at Stanford.  I knew I had a 50/50 chance at getting the drug, but either way, I was determined to do it. Either I got the drug, and perhaps got help, or I didn’t and hopefully helped others.

The trial was an 18-month chemotherapy treatment, but I knew right off that I was getting the actual drug and not a placebo because I had to be hospitalized because of the side effects. They adjusted my dose a couple of times because I was so sick with the side effects, and they actually asked me if I wanted to drop out. But I wound up completing the trial because I wanted to help find a treatment that would help more people than the conventional chemo.

After the trial, the doctors told me that of the six women at Stanford who were on the trial, several on the placebo had recurred and one had died. At that time the cancer had not come back in those of us who received the actual drug. I haven’t been able to track down any of the other women in the study, so I don’t have any long-term data. Unfortunately the side effects turned out to be too serious to take the drug to market, but I’m grateful I persevered and got the full treatment.

There’s no doubt that the chemotherapy is one of the major reasons I’m here to tell my story today, I’m fully convinced that my mindset played just as significant a role. When I was diagnosed, I didn’t absorb their message that I was going to die. I heard what they were saying, but I was convinced that the fatal diagnosis didn’t really apply to me. At the same time, I can remember realizing that I needed to live every moment to the fullest.

Humans are capable of two diametrically opposed ideas at the same time. I remember one morning in particular waking up and feeling totally exhausted. I felt tired on the cellular level, and all I wanted to do was just turn over and go back to sleep. But I said to myself, “You may never feel better than you do right now, so get up and get dressed and go play with that baby.” I remember feeling like I didn’t really accept this diagnosis and that I was going to make it, yet coming to the conclusion that I needed to live every moment because they might not come again.

That combination really served me well. And the take home lesson for me after treatment was that it is really important to live today and not miss today. I really learned to take advantage of opportunities… to seize the day.

What are you doing today to live this day to the fullest?

Tomorrow’s Post: Life after Breast Cancer

When I started treatment, my goal was to make sure the medical staff thought of me as the perfect patient. I was going to do exactly what they said to do and follow all the rules – and I was going to be happy about it.

The first six or seven months, that was the way I operated. I went through chemotherapy and a lumpectomy. At one point the team decided I should have a port implanted in my chest so the drugs could be administered without needles in the arm.

I preferred to undergo the surgery under conscious sedation to implant the port because I didn’t seem to recover as quickly when I was fully sedated for a surgery. The anesthesiologist was someone I knew, and we were talking before the surgery. Then they put the drape up between my face and the surgical field so I couldn’t see where they would be cutting.  I was still very aware of what was going on even though I couldn’t see it or (theoretically) feel the surgery.  I heard the anesthesiologist  say, “Ok now – no whining.” I steeled myself, “I’m going to be good and I’m going to be strong and I’m not going to whine.”

But the surgery was not what I expected at all. During one part of the procedure, when the surgeon was using what seemed like a hammer and chisel to pound the port in place inside my chest, I didn’t think I could take it. I was trying so hard to be strong, but it was awful and I felt like passing out. But I didn’t whine.

After the procedure, I told the anesthesiologist how hard it had been. And his face contorted and turned white. “Why didn’t you tell me?” he said, upset. “It’s my job to make sure you’re comfortable!”

“But you said, no whining,” I replied.

I was shocked when he said, “I was talking to one of the nurses.”

Light bulbs went off. Right then I realized that I was the only one in the room who had information about how I was feeling, and it was my job as part of the team responsible for my health to communicate that information. I needed to stop being a compliant, non-complaining patient. I needed to speak up and share the information about what was going on inside my body with the rest of the people who were working with me to try to fix it.

In the course of the next six to seven months, I completely changed how I interacted. I learned how to give myself a shot I had to take daily so I didn’t have to wait on a nurse or get an appointment. I worked with my doctor on a daily plan for my medication, which needed to be adjusted regularly when we were trying to figure out what would work. I had gotten to the place where I knew what I needed. My doctor was reviewing my suggestions, but I was making decisions. I credit that engaged, that empowered, behavior as one of the reasons I was cured.

How have you taken control of your own healthcare decisions? What do you do to prepare for a doctor’s visit? Do you feel comfortable approaching your doctor with ideas or information?

Tomorrow’s Post: Enduring the Journey, Finding the Cure

I tried for 15 years to get pregnant, and when I was told that we should prepare to welcome a baby boy, I was determined to do everything right. I was prepared for the challenges of breastfeeding, but it turns out that my son and I were the perfect nursing pair. He did a great job of latching on and sucking, and I did a great job of producing “liquid gold”. Then I developed a breast infection. Many nursing women have them -  painful, but no big deal.  I felt a lump that seemed like a clogged milk duct. But when the infection went away, the lump stayed, so I went back to the doctor.

The doctor came in and examined me. My son, then 9 months, was on my lap, and she laid one hand on my breast. Then she said abruptly, “Ok, you can get up now,” and started ordering tests. Later she told me she knew what the lump was as soon as she touched me.

I was very lucky. From the time I had the breast infection to the time I had the definitive diagnosis was six weeks. Breast cancers in breastfeeding women are rarely diagnosed this quickly because the breasts are so lumpy when you’re nursing.

But when the surgeon came in and told me I had breast cancer and I had to stop nursing, all I heard was, “YOU HAVE TO STOP NURSING.” I didn’t listen to the details about how serious this cancer was.

When you’re diagnosed with something that’s really devastating, there’s only so much you can hear. For me it was that I couldn’t breastfeed any more. All I could think of was, “How will I feed my baby?”

A couple of months later, I sat in my oncologist’s office and received more bad news. He was talking about treatment and told me I had only months to live. But before he told me my prognosis, he told me, “YOU HAVE TO HAVE REALLY STRONG CHEMOTHERAPY AND YOU ARE GOING TO LOSE YOUR HAIR.”   That’s all I heard.

If you are close to someone who has just received very tough news, she may not realize what the actual news is yet. One of the best gifts you can give this person, besides just being there, is to accompany her to the doctors’ offices and write down everything the doctors and nurses communicate. Then give the patient some time to digest the big news and schedule a quiet time to go over the other details. This is a very vital service a caregiver can provide for a patient in need.

I’m now on the board of a non-profit organization, the Society for Participatory Medicine. It’s really a movement that encourages people to be part of their own healthcare team and encourages healthcare professionals to treat patients and their families as part of the team. I was very lucky to get to that place in my treatment. Tomorrow I’ll talk about that, but first, please share your story… have you ever been on the receiving end of this type of bad news? How did you process the information you were given? Have you ever helped anyone through a similar situation? What tips can you give to help others in your shoes?

Tomorrow’s Post… Getting Treatment: How I Became an e-Patient

On September 8, 2009 I went to my doctor for my annual physical. I’m very diligent about getting my regular checkup because I have a history…

On March 22, 1996 I was diagnosed with stage three inflammatory breast cancer and given months to live. This doctor, my gynecologist, has been with me the entire time – she was my doctor even before the diagnosis, back when I was struggling with infertility and trying to have a baby. She was the very person who diagnosed the breast cancer. She is a phenomenal physician and a very trusted advisor, and now she is a friend.

During my last visit, my doctor, my friend, looked at my charts and my paperwork, then turned to me and said some of the most beautiful words I’ve ever heard.

“We can now call you cured.”

My breast cancer is gone. Done. Over. Nonexistent. We don’t have to use words like “remission” or “no evidence of disease” or talk about a “probability of recurrence.” This cancer that almost took me away from my children and my husband is truly cured. And just like I remember that day in 1996 when this same woman told me I had a deadly form of breast cancer, I will forever remember the day she told me I was cured.

I actually haven’t told many people about my latest news yet because I wanted to share it here in the DrGreene.com community. It’s Breast Cancer Awareness Month, and I know there are many women – too many women – out there right now who have concerns about breast cancers. Perhaps you’re putting off a mammogram, or maybe you’ve found a lump and are waiting for news. Some of you are probably going through treatment right now, and I’m sad to say I know more than a few of you have lost loved ones to this disease.

I wanted to tell my story publicly on DrGreene.com for a number of reasons. First, my diagnosis of breast cancer was one of the reasons Dr. Greene and I changed our lifestyles and dedicated ourselves to sharing health information via DrGreene.com. Second, my experience as a cancer patient taught me important lessons about how patients need to participate in their own healthcare. And third, because I want to spread the word that people can live through a fatal diagnosis, even when the odds seem overwhelming.

My doctor told me that when she talks to other women with breast cancer, she calls me her poster child. What I had was supposed to be fatal, and if I can beat that cancer, others can, too.

Share your story… how has breast cancer affected your life?

Tomorrow’s Post… Getting the Diagnosis: All You Hear is “Cancer”

As a father, I have a desire to teach, provide for and protect my children. For me, one way to do all three of these is to choose organic foods for my family. I now know this as a physician, but I first learned it as a father and a husband.

That’s often the way it is. Medical textbooks don’t contain all the answers. Intuition and personal experiences often pave the way for later scientific understanding.

Today there is a strong, mounting body of science that is illuminating the benefits of growing crops organically. There is also evidence showing the harm of certain chemicals used in foods. And where we just don’t know the effects of new chemicals, we can proceed with precaution and protection for our children and their world. But I didn’t always feel this way.

When my first son was born, I was still in medical school. His knowledge of food came from what we fed him and what he saw us eat. Children learn more from what we do than from what we say. As a busy medical student, intern and then resident, I ate a typical rushed American diet: convenience foods, fast foods, junk foods. I ate some fruit most days and even less in the way of vegetables.

I was more interested in nutrition than my peers and went out of my way to take additional nutrition courses to supplement the meager offerings in the core curriculum. Still, I knew little. And what I did know was pushed aside by habit and a busy schedule.

By the time my youngest son came along, I was an established pediatrician. I had learned a lot about many aspects of health and wellness. I knew that there were benefits to foods grown organically, but I didn’t believe this deeply enough for it to become a priority in my family’s life. Then everything changed…

Crashing Insight When my youngest was a baby, my wife, Cheryl, was radiant and full of life. We were enjoying parenting and working together. Life was great!

Then Cheryl was diagnosed with stage III, high-risk, inflammatory breast cancer. The prognosis was grim. She was not expected to live to see the New Year. I grappled with the question “Where does breast cancer come from?” Like so many women with breast cancer, Cheryl had no history of the disease in her family. But she grew up on a farm.

It turns out that even though farmers in the United States are healthier than the general population in many ways, they have higher rates than the American public at large for several cancers, including leukemias, lymphomas, myelomas, brain cancers, and cancers of the lip, stomach, skin and prostate. But it’s not just the farmers themselves who get sick. Their children also have higher rates of reproductive tumors, leukemias and brain cancers—kidney and bone cancers, too.

As a girl, Cheryl could hear the pesticide sprayers rumble as she lay in her bed. She drank water from a well on the farm, a water source we later learned had been contaminated with pesticides. She bathed in this water. Her family cooked with it.

Several lines of reasoning suggest that agricultural pesticides used on farms are partly responsible for the increased cancer rates we see in farm families . The structure and function of these chemicals, their effects on animals and what we are learning about their effects on people are all reasons for concern.

The first studies I read about pesticides and breast cancer were a startling wake-up call for me . If these chemicals are hurting people and animals on the farm, how might they be harming the rest of us? Why wait for science to answer this question? The enormity of what we still don’t know about their effects demands thoughtful choices.

Against all odds, Cheryl survived her cancer. Did her early toxic pesticide exposure cause her cancer? I don’t know for sure, but I do know that I don’t want our children and other children put at this risk.

A Father’s Protection Most children today don’t grow up on farms. Does choosing organic food make a difference for them? Researchers at the Department of Environmental Health in the School of Public Health and Community Medicine at the University of Washington started tackling this question by measuring pesticide levels in urine samples from preschool children in suburban Seattle. They divided the children into two groups: those who were fed mostly conventional foods and those who were fed mostly organic foods.

The urine samples of children who ate what people call conventional diets had mean pesticide concentrations about nine times higher than did those of children who ate organic! The results indicated that these preschool kids had exceeded the safe pesticide exposure levels set by the EPA and that their health was at increased risk. By contrast, those children who ate organic foods were well below the EPA levels deemed to cause negligible risk. By feeding your family organic foods, you safeguard them from harm and help them build healthy bodies.

Choosing organic for my family is one way I protect it. Additionally, when we provide our children with organic foods, we are often giving them an even bigger edge—like organic blueberries instead of partially hydrogenated snacks or organic orange juice instead of high-fructose sodas. What a gift! What an important part of our responsibility!

One of the reasons I wrote Raising Baby Green was to help parents easily sort through and prioritize which baby products area healthiest and safest for their children. In the book I suggest alternatives for plastics containing Bishphenol A (BPA) – a hormone mimicker found in most baby bottles.

Within the last week BPA has been in the news as a draft report of the federal US Toxicology Program raised concern that BPA could trigger behavior problems and early puberty in children; Canada moved to ban BPA in baby bottles, citing evidence of increased risk of breast cancer, diabetes, and hyperactivity; Wal-Mart, Toys-R-US, and Nalgene announced that they are moving to phase out BPA in many products within a year; and the American Chemical Council announced that they still consider BPA safe for babies.

These are all important developments.

But BPA is found in other places besides baby bottles (such as the linings of food and formula cans). And BPA is only one of the concerning ingredients in some plastics. And plastics are only one group of concerning exposures during pregnancy and early childhood.

But there is no reason to be overwhelmed. By taking control of only a few routes of exposure you can change the impact of the environment on your child: things that go in the mouth, things that go on the skin, and fumes and aromas in the air. In each category, increasing healthy exposures and decreasing concerning ones can help tilt the odds in your child’s favor. Simple changes in each arena can make a big difference, without much cost or effort.