Breast Lump What Lies Beneath?

Breast Lump What Lies Beneath
Robin M. Gray, R.N.
Available on Amazon.com, $13.50

As medical errors accumulate, woman moves beyond anger to acceptance

Robin Gray, a former nurse and stay-at-home mom, was taking a relaxing bath when she found a breast lump. After consulting with her husband, a physician, she took her concerns to the well-respected colleague he suggested. Robin is told the words that are heard all too frequently by young women with breast masses – “It is just a cyst.” In this writer’s opinion, five of the most dangerous words a young woman can hear.

Over 11,000 women under the age of 40 are diagnosed with breast cancer every year. Breast cancer in younger women is often more aggressive and advanced than their older counterparts. So when a young woman, full of fear, approaches her doctor with a mass and is told not to worry about it, it is especially tragic. The woman’s fears are subsided, while the tumor continues to grow inside her.

Gray recounts her story of medical mishaps and eventual breast cancer diagnosis in her book “Breast Lump What Lies Beneath?” Multiple physicians are to blame for the progression of her cancer and the more debilitating surgeries and treatments that resulted. From a general disregard for her complaints, to multiple misreadings of her biopsies, Gray endures treatment from her physicians that is unfortunately all too common to young women.

Her anger turns to action when she initiates a medical malpractice lawsuit against her physicians. However, this is not a story of revenge. Gray moves beyond being the victim, and is finally able to accept the egregious errors of her physicians. With help from her family and her faith, she finds peace.

Robin Gray’s story is an interesting read for anyone who has experienced a breast cancer diagnosis, and also for those who wish to reduce the risk of a misdiagnosis. She includes in her book warnings against the diagnostic methods commonly used in young women, in turn giving readers the tools needed to demand further testing of breast masses if needed. Gray also shares the importance of moving past negative events in life, and truly appreciating the positive. And that is perhaps the most important message of all.

This Time’s A Charm

This Time's A Charm
Lessons of a Four-Time Cancer Survivor
Donald A. Wilhelm
Available at Amazon.com, $21.95

After hearing Donald Wilhelm talk about his cancer journey on The Stupid Cancer Show (www.i2y.org) back in November, I was interested in reading his book, This Time’s A Charm, Lessons of a Four-Time Cancer Survivor. Now, I’ve heard of people, myself included, beating cancer once. Maybe twice. But four times? I had to read this guy’s story.

Donald was diagnosed with Hodgkin’s Lymphoma at the age of 28, after six months of unsuccessful treatment for what his family doctor thought was a sinus infection. After his diagnosis was finally confirmed, Donald went through chemotherapy, which eliminated any evidence of the disease. He then recurred. Donald takes us into his hospital room as he details his experience with a stem cell transplant, which included a whole month of isolation since his immune system was basically non-existent. The transplant was successful, but he eventually recurred again. This time, he battled the cancer with chemotherapy and radiation. Donald experienced a brief remission, and once again relapsed, for the fourth time. It’s then that he decides, based on his knowledge of his own body, to take charge of his own treatment.

Donald writes like he talks. On the Stupid Cancer Show, he spoke in a friendly and honest way that made it seem like I already knew him. His book comes off the same way. His writing is honest, sometimes brash, and often funny. You wouldn’t think you’d chuckle while reading a book about a guy who had cancer four times, but I had to when he was explaining his first bone marrow biopsy procedure and was unaware of the audience of residents that often accompany physicians in teaching hospitals. “Yeah, that’s cool. I want all these people, especially the chicks, to check out my white ass while you’re torturing me. In fact, shouldn’t we be waiting for Oprah’s television crew?”

It was interesting to read about Donald’s experience with lymphoma. A breast cancer survivor myself, I could relate to certain aspects of his diagnosis, feelings, and treatments, but his type of cancer was different enough that I actually learned a lot about the disease. I would highly recommend this book for anyone newly diagnosed with lymphoma, or any type of cancer for that matter. Donald also writes of insights that never came through for me when I went through cancer treatment. For example, Donald points out that when someone is diagnosed with cancer, their doctor will almost certainly recommend that they immediately stop smoking, because it impairs the immune system. Doctors don’t, however, recommend to their cancer patients that they go for therapy to help with their mental coping skills, even though anxiety and stress have been proven to have a negative effect on the immune system. Great point!

After Donald’s fourth recurrence, facing his doctor’s prediction of six months to live if he does not do the recommended chemotherapy and second stem cell transplant, he parts ways with conventional treatments. He is convinced that if he could just separate himself from all of the stress and anxiety associated with the grueling medical procedures, his body can take over and his own immune system could fight off cancer. He did the things he loved – skiing, snowmobiling, hiking – he even bought a boat. He fell in love and married his now wife, Amy. This departure from traditional cancer treatments seems to have worked well for Donald – he’s still here to tell his story.

The most important part of the book, in my opinion, is his eleven pieces of advice for those with cancer. These are definitely gems of information that I wish I’d have known when I was first diagnosed.

Donald often quotes a Chinese proverb: “To know the road ahead, ask those coming back.” Donald has returned from the darkness of cancer with valuable information for all of us, and I thank him for that.

Catch Donald Wilhelm on the other stops on his blog tour:

2/18/09 www.uniboobclub.blogspot.com
2/19/09 www.moutray.wordpress.com
2/20/09 www.makesomelemondae.com
2/21/09 www.awesomecancersurvivor.com
2/23/09 www.serendipityfactory.com
2/24/09 www.everythingchangesbook.com
2/25/09 www.cancercornerlive.blogspot.com
2/27/09 www.appendix-cancer.blogspot.com
2/28/09 www.imtooyoungforthis.org
03/1/09 www.route53.wordpress.com

Starting or growing a family after breast cancer: Helpful resources

Back in 2003, when my doctor told me I had cancer, I didn't cry. When he told me I would need a mastectomy because my tumors were so large, I didn't cry. When he said I'd lose my hair courtesy of chemotherapy and radiation would burn my chest until I had blisters, I still didn't cry. When he told me that I might not be able to have children due to the effects of chemo and my hormone receptor status, I broke down. The tears came, and they didn't stop for what seemed like forever. I could hardly look at my husband, who just the month before, with a twinkle in his eye, suggested that we should start "trying." I felt my dreams for a houseful of kids that had my blue eyes and his blond hair slip away.

After the initial shock, I did what I always do when faced with something new. I hit the books. Or I should say, the internet. I learned that certain types of chemotherapy, particularly cyclophosphamide (Cytoxan) can increase the risk of temporary or permanent infertility. I also learned that for women with estrogen receptor positive cancer, like I had, the drug tamoxifen was recommended for five years, and pregnancy is not an option while on tamoxifen.

While this was discouraging, I found that I still had options. I spoke with my oncologist, and we decided to eliminate cyclophosphamide from my “chemo cocktail” in an effort to preserve my fertility. After my cancer treatment was completed, I did take tamoxifen, but discontinued it after about two years so that I could try to get pregnant. But the decisions that I made are not appropriate for everyone, so it is very important to discuss your particular case and concerns with your doctor.

These are some of the resources I found helpful while making my decisions.

American Cancer Society: Fertility and Cancer - What Are My Options?
Explains how cancer treatment affects fertility, how to preserve fertility, and questions to ask your doctor.

Fertile Hope
National, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.

Adoption after Cancer Listserv
This list is a forum to share information, advice, and stories to support those who choose to adopt after cancer.

LiveStrong Foundation: Female Infertility
Discusses the risks and symptoms of fertility as they relate to cancer survivors, as well as options and additional resources.

Resolve: The National Infertility Association
Non-profit organization with nationwide network mandated to promote reproductive health and to ensure equal access to all family building options for men and women experiencing infertility or other reproductive disorders. Free weekly teleseminars in 2009.

KidsAfterCancer.com
Features news, resources, and survivor success stories.

My Life with Laura: A Love Story
by Chad Moutray
Available at Lulu.com, $24.99

My Life with Laura: A Love Story is a wonderfully written tribute to Laura Moutray by her husband, Chad Moutray. Chad Moutray takes the reader on an incredibly detailed journey of their life together, from the moment he meets Laura until the moment they tragically part when she passes from breast cancer. The stories are so detailed, in fact, that by the end of the book, you might feel like the Moutrays are old friends.

It starts like the typical love story – Chad and Laura meet, fall in love, and have a baby. Chad describes each vacation, family event, their beach wedding, and even the birth of their daughter Charlotte so thoroughly that the reader really gets to know each of them well. While it may sound like the classic love story, the ending is anything but predictable.

After having some pain in one of her breasts, then noticing that her daughter had refused to nurse on the same side, Laura sought a medical opinion, and like so many young women, was first treated for mastitis. Her symptoms persisted, however, and at 35 years old, Laura was diagnosed with breast cancer. Throughout the time of her diagnosis and treatment, Laura maintained her grace, positive attitude, and faith.

As a breast cancer survivor, I was a bit hesitant to take this book on. In general, I don’t enjoy reading of people dying from cancer. It scares me. I knew I would have trouble reading this story in particular, because Laura and Chad’s daughter Charlotte was just two when she lost her mom, about the same age as my own daughter. I knew I would picture myself in Laura’s situation, and I was not sure I wanted to go there. Upon finishing the book, I realized that while some parts were very sad and a little too relatable for me, I enjoyed it, and I’m glad to have read it. We need to read books like this. Not only to celebrate Laura’s beautiful life, taken away too early by cancer, but also so we can realize that Chad and Laura’s story could very easily have been yours or mine. It sounds so cliché, but this book is a reminder for us all to appreciate every moment we have with our loved ones.

While the story has an ending which is impossibly sad, reading how strong both Laura and Chad were as they dealt with this incredibly difficult situation is truly inspirational to anyone fighting cancer or struggling through any difficult situation in life.

How to avoid a misdiagnosis? Don't get cancer!

When I was diagnosed with breast cancer in August 2003, it was a full 18 months after I first felt the lump. I didn’t experience this delay because I was too afraid to see a doctor about it, or too busy. No, my cancer was allowed to grow and spread unchallenged for 18 months because three different doctors, including the radiologist who looked at the lump with an ultrasound, told me it was just a cyst. Nothing to worry about. I was young, just 29 years old, and had no family history of breast cancer, so my complaints about the lump, and later, the breast discharge, were ignored.

So why is there such a major public emphasis on the importance of early detection, if many young people are ignored in the exam room?

It happens all too often. Hoarseness or a cough is attributed to a respiratory infection, when it’s really lung cancer. Rectal bleeding is blamed on hemorrhoids when it’s really colon cancer. And breast masses are attributed to fibrocystic conditions when it actually was breast cancer.

Don’t get me wrong. There are many wonderful doctors out there who listen to their patients, perform the necessary tests, and follow up with an appropriate treatment plan. I managed to end up with three who didn’t follow these basic tenets of patient care. And I’m not the only one.

The misdiagnosis and delayed diagnosis of breast cancer in young women is the most common type of medical malpractice case. The most common allegation in these claims is that the doctor did not order tests to check for potential breast cancer, which caused the delay and progression of the cancer to a later and more deadly stage. While breast cancer is the most commonly misdiagnosed cancer, 12% of all cancers are initially misdiagnosed, and most commonly in patients under 40.

So, how can young people avoid a misdiagnosis of cancer? First of all, don’t get cancer! I wish it were as easy as that. But if you do have a nagging symptom that doesn’t seem to go away, see a doctor. Most of the time, a doctor’s diagnosis is accurate. Don’t self-diagnose any problem based on what you read on the internet or hear from friends or family. See a doctor.

If you feel like your doctor has not taken your complaints seriously, see ANOTHER doctor. Get an appointment with a specialist, who is less likely to misdiagnose than a primary care doc. If the opinions of the two doctors agree, then the risk of a misdiagnosis is greatly reduced. If they disagree, be persistent until the correct diagnosis is reached.

Ask for a diagnosis. This is where I went wrong. Three doctors told me my cancer looked like a cyst. I should have asked what characteristics of the mass led them to that conclusion. I should have asked if breast discharge is normal with a cyst. I should have asked what else my symptoms could have possibly been attributed to. Instead, I left each appointment, happy to have a clean bill of health, but still with a nagging feeling that something was wrong.

Read test reports. This may sound obvious, but make sure YOUR NAME is on the report, and that the tests given were appropriate for your specific condition.

And finally, do your own research about the diagnosis given by your doctor. The best way to be confident with your diagnosis is to understand the characteristics of the disease. Research your disease, how it’s diagnosed, and what tests are typical.

So, what do you do if you suspect malpractice? The first thing I wanted to do was call my doctors and totally bitch them out. Don’t do that! If you do speak with the doctor, calmly ask them what happened. Any ethical doctor will discuss your care and tell you why certain decisions were made.

If you still suspect malpractice, try to get your complete medical record from your doctor’s office. Keep a detailed record of events and conversations, including the names of the doctors, nurses, and techs that were involved in your care. And finally, contact an experienced medical malpractice attorney in your state. They will be able to tell you if it would be appropriate to initiate a lawsuit.

I DID sue my doctors, soon after starting chemo. At first, my thoughts about suing them revolved around some kind of revenge for the delay I experienced. But the thoughts of revenge quickly subsided as reality took over, and I found that taking legal action was the only way, for me, to try to make a change. I wanted those doctors, and all the doctors at their medical institutions, to think twice the next time a young woman presents with similar symptoms. But a lawsuit is not the way to go for everyone. In the end you just have to be OK with however you decided to deal with your cancer and your care.

For more information on how to reduce your risk of a delayed diagnosis, visit www.tinakoral.com.

Humbled and Overwhelmed

I am normally a very private person. There are things about me that my husband, that I've known since the age of five, is still learning about me. I keep my personal life pretty close to the vest. That being said, my cancer story, If I Just Breathe, is one I can't keep to myself. And I've been so humbled by the overwhelming response to this book. I just can't get over how many wonderful e-mails I've received in response from those who have purchased the book and read my story.

I was diagnosed at age 30, a full 18 months after bringing the mass I felt to the attention of my doctors, who said I was too young for breast cancer. My doctors, and even I, didn't know that I was at risk for breast cancer. I didn't know that over 11,100 women under the age of 40 are diagnosed with breast cancer each year, and that 1,100 will lose their battle.

Writing this book was the best way that I knew how to raise awareness of breast cancer in young women. Readers are taken on an intimate journey through my diagnosis, treatment, and the medical malpractice lawsuit I initiated against my doctors.

With its messages of determination, resilience, and hope, If I Just Breathe will make a great gift. In addition, you will be supporting two organizations with a focus on cancer in those under 40, The Young Survival Coalition, and the I'm Too Young For This! Cancer Foundation.

Thank you to all who have purchased this book. I hope you enjoy it. And have a happy, healthy holiday season!

Anticancer: A New Way of Life

I’m a breast cancer survivor of over five years. To be honest, in those five years, I have not significantly changed my lifestyle in an effort to reduce my risk of cancer returning. I’ve switched to organic dairy products, but other than that, my diet and level of physical activity have remained unaltered since my diagnosis in 2003.

It was on Thanksgiving Day that I had that revelation. I was watching my 16-month-old daughter Averie gleefully bang away on the keys of my grandmother’s piano that I realized, I have not significantly changed my lifestyle in an effort to reduce my risk of cancer returning. Now, I don’t pig out on junk food (regularly), and I would not describe my lifestyle as sedentary. But I got cancer for a reason, and it’s not because I had the BRCA gene. I realized needed to change my lifestyle if I wanted to keep cancer at bay and be around to see Averie grow up.

A friend had recommended Anticancer: A New Way of Life (ISBN: 9780670020348) by David Servan-Schreiber, MD, PhD months ago, claiming that it had completely changed her understanding of cancer and the way she lived her life, so I decided to pick it up.

“Cancer lies dormant in all of us. Like all living organisms, our bodies are making defective cells all the time. That’s how tumors are born. But our bodies are also equipped with a number of mechanisms that detect and keep such cells in check. In the West, one person out of four will die of cancer, but three of four will not. Their defense mechanisms will hold out, and they will die of other causes.”

And so begins the most interesting, thought-provoking, and applicable book about cancer that I have ever read. Servan-Schreiber is a physician and brain cancer survivor of over 15 years. At the time of his diagnosis, was a researcher working on his PhD in neuroscience. Frustrated by his oncologist’s reluctance to discuss any kind of lifestyle changes he should take to prevent a relapse, he began months of study on how to help his own body protect itself from cancer. He clearly opines that there currently are no alternative therapies that will cure cancer, and that it is unreasonable to try to cure cancer without the conventional treatments including chemotherapy, radiation, surgery, and hormonal therapies. At the same time, he believes it is also unreasonable to rely only on these conventional treatments and deny the natural ability of our own bodies to defend against cancer.

The book begins with an explanation the circumstances necessary for cancer growth: inadequate immune response to cancer cells, inflammation, and the proliferation of blood vessels to the tumor itself. Servan-Schreiber takes these complicated biological processes, and explains them in a way that is easily understood. This description of the principles of cancer growth lays the groundwork for the rest of the book.

The remainder of the book outlines the four approaches that the author believes anyone can use to create a bodily environment which is inhospitable to cancer:
1. Rid our bodies of environmental toxins;
2. Exercise regularly to inhibit inflammation and boost immunity;
3. Strive for a psychological peace; and
4. Modify our diet to reduce the intake of foods that promote cancer growth, and increase our intake of foods that actively fight cancer.

Now, the first three I have no problem with. I am all about living greener, exercising, and searching for emotional harmony. But talk about changing my diet, and that’s where I get discouraged. I’ve tried to diet in the past, and the results are always the same. I do well for about four days, then I throw up my hands when I don’t see a change on the scale and run for the chocolate chip cookie dough ice cream. But this diet modification is not for weight loss (although a weight reduction would be likely following the changes Servan-Schreiber suggests), it is about food as medicine.

The author recommends increasing dietary intake of green tea, turmeric, mushrooms, berries, and certain herbs, and explains how the phytochemicals in each food fights cancer cell proliferation. Corn or soy-fed beef and chicken, foods including refined sugar, margarine, and nonorganic dairy are among the foods listed as cancer promoters. I found these anticancer diet modifications to be completely doable, even by someone as resistant to the word “diet” as I am.

Anticancer is not a biology book, but one that puts the science of cancer into easily understandable concepts. It’s a guidebook for those who wish to take an active role in preventing cancer in conjunction with conventional therapies. And it’s a good read, not only for survivors, but also for those trying to avoid what I think are the three scariest words in the English language: “You have cancer.”

Please let me know what YOU thought of the book by posting a comment!