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Personal accounts from those with breast cancer

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Those touched by breast cancer share advice ; For this year's Pink Paper, we've invited those touched by breast cancer to share their advice and reflections with the newly diagnosed. We lead off with

Meredith Moss Staff Writer
Dayton Daily News
10-15-2011

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Those touched by breast cancer share advice ; For this year's Pink Paper, we've invited those touched by breast cancer to share their advice and reflections with the newly diagnosed. We lead off with reflections from Lauren McClure, the young woman who appeared on the cover of our first Pink Paper two years ago. Here are Lauren's thoughts:
Byline: Meredith Moss Staff Writer
Section: Life

Abreast cancer diagnosis is a life-changing moment. It is very easy to get caught in the whirlwind of doctor appointments, scans, visits to the pharmacy, etc. Overnight you are using words in your everyday speech you had never uttered before. Everyone you talk with wants to know about your new diagnosis, out of sheer concern.

If I can offer one shred of advice to women whose lives have recently been invaded by breast cancer, it is to be in control of the many decisions that will need to be made. Don't let breast cancer take more than it already has. You will be forced to make difficult choices that you will live with forever. I had to choose whether to keep my breasts or remove them at the young age of 22. It was the most difficult decision of my life, but I knew it was best for my longevity and quality of life.
One of the biggest decisions you will be faced with happens every single morning. You have the chance to choose what kind of day you want to have. It's a powerful moment when you realize you have many reasons to be sad about life but when you wake up in the morning you keep your head up and are excited to find reasons to smile that day. It has been two years since my diagnosis and I still struggle with this choice. I have days where the moment my feet hit the floor, I've already decided nothing good will come of that day. The day I started to lose my hair, I did not get out of bed. I cried and pulled my hair out all day long. It was one of the most devastating and scariest experiences of my life. I decided that day that I would take advantage of my own happiness rather than let cancer override it.

While breast cancer is prevalent in all corners of the world, all social tiers, and all ethnicities, there is not one single person who has your experience. People will want to talk about their diagnosis, treatment, surgeries, etc. No one else has your same story.

When I was first diagnosed, I did not want to relate to anyone else, I was not ready to admit that I had breast cancer. Last year, Meredith Moss at the Dayton Daily News asked if I would once again participate in the Pink Paper. I declined because I was so exhausted with my role as a breast cancer survivor. Knowing your boundaries and what you are comfortable with will increase your everyday happiness immensely. If you are just tired of every conversation you have being centered around your diagnosis, don't hesitate to ask your friends or loved ones if you can just talk about something else at that moment. This is not rude, or a red flag for concern. You are just tired. That's OK.

I now work for an oncologist at Dayton Cancer Center and while I love my job immensely, some days I come home exhausted mentally and emotionally from cancer. I live and breast cancer it seems at times, but everyday I grow stronger and more knowledgeable.

It's important to remind yourself that cancer does not have you, you have cancer. Meaning, you are the one in control and you can mentally and physically beat this disease. Breast cancer will take away physical parts of your body, but it can only take away your pride, joy and beauty if you allow it. Turn your face to the sun, and the shadows will fall behind you.

Lauren McClure, Kettering

- There is always hope. Listen to your doctor. Ask questions. Keep your friends and family close. You will not only survive, but you will thrive.

In the beginning, I was really angry when I learned that I had cancer. I was too young -- age 38 -- and I did not smoke. I thought that I would not live to see our daughters graduate from high school. Twenty-eight years later, we now have two granddaughters and four great-grandchildren. I have been blessed with more than I ever anticipated. Life is good!

I began quilting while we were stationed in Germany. After volunteering with the American Cancer Society, we talked about creating a Making Strides Against Breast Cancer quilt. I feel that by creating these quilts, I can spread the message of breast cancer awareness and encourage others in our community to get mammograms. Cancer is not a death sentence. There is a light at the end of the tunnel and we can not only survive, but thrive from this disease. I am so grateful to the Sulphur Grove Quilting shop for donating their machine quilting to complete our awareness quilt.

Joan Scott, Riverside, 28-year-survivor

Look for Joan Scott's quilts on display today in the Survivor Tent at the Making Strides Against Breast Cancer Walk at Fifth Third Field. You can sign a square to honor a survivor, someone who is currently fighting cancer, or in memory of someone who has lost her battle with breast cancer.

- My advice for anyone that is either going through or been through a journey with breast cancer is to have a positive attitude foremost. Staying positive is one of the most important things you can do. Listen to your doctors and work with them as a team ... not with them being superior to you. Above all, have faith. Without my faith none of this would have seemed as easy as it did.

Do I ever want to go through this journey again? NO! But I don't regret what I went through. It has made me a stronger and better person and does more every day.

I am now a member of the Butler County Volunteer Leadership Council with the American Cancer Society. I am also the Breast Project team chairperson for Butler County as well as a Reach to Recovery volunteer, and a co-chair of the Relay for Life of Hamilton relay in 2012.

Rita Holmes, Hamilton

- I tell women to get as much information as possible from their breast surgeon, oncologist and radiation oncologist, and to stay positive. Breast cancer is curable.

Gary L. George, MD, Chairman, Medical Imaging, Miami Valley Hospital

- At the time I was diagnosed with breast cancer 25 years ago, we expected the doctors to tell us exactly what to do. I had a total mastectomy and node removal and so did all of the other women in our group. Today, it's much scarier for women because there are so many different options they need to mull over and discuss, and they don't know enough to make those decisions. Doctors today won't come right out and tell us what to do.

Julianne Bonder, Centerville

Some thoughts:

- My birthday gift from my daughter is that she gets a mammogram.

- When I was going through surgery and chemo 19 years ago, there was no one for my husband to talk to -- such as another husband who had been through it with his wife.

- Losing my hair was the hardest part of the ordeal. I did not have the courage to buzz it off myself but admire women who do and I wish I had.

- Anyone facing surgery or recovering should read Dr. Susan Love's book ... It's like the Settlement Cookbook for breast cancer!

Marsha Froelich, Trotwood

- On the morning of 9/11/ 2001, I was in the doctor's office getting the news that I had breast cancer and would have to undergo chemotherapy and radiation. Needless to say, along with the devastation that day brought to our whole country, it was personally a day that changed my life forever.

I have just celebrated 10 years cancer free. If I could give advice to someone newly diagnosed with breast cancer, it would be to rely on your faith, yourself and loved ones. There are far more resources available today, than there were 10 years ago. Be your own health advocate. Research and ask questions. Get second opinions.

Always take a friend or loved one to appointments and have them take notes. Nine times out of 10, I was given more time and attention when I had someone with me. Sad, but true. If you don't have someone to go with you, contact the American Cancer Society for help locating someone to accompany you. Your fight is unique and how you choose to fight is your decision. Accept friends' and family members' input, but make your own informed decision about care. It is you who will be living with and through those choices. Stay strong!

April Thomas, Troy

- I tell everyone to take the experience a step at a time. It is a process and can be easier to understand and not so overwhelming taking it a step at a time. I also tell women that this is a time to focus on themselves. It can be difficult as women to focus on ourselves, but this is a time they need to put themselves at the center of doing what is best for them.

Amy McKenna RN, Breast Cancer Coordinator, Miami Valley Hospital

- Learn all you can from anywhere you can and make sure you like all your doctors. If not, find new ones. Be brave and demanding!

If you are not exercising, start. Walking is fine. More is better. Only one of my doctors told me to do so, but now studies are finding it is significantly helpful in keeping cancer at bay.

My story: I was unprepared for the doctor to find a lump as big as a lime in my breast -- I'd been checked faithfully each year. It was hiding behind fatty tissue. I researched everywhere, went to different support groups, found all the information I could, looked up my friend who wrote "translations" from physician-speak to English about cancer, and she translated all my lab reports for me. I collected my lab reports and all the information I could. I always took my time finding the next doctor (breast cancer includes three specialties: surgeons, oncology, radiation oncology.) I gathered up support from everyone who was a friend or had ever been one, those who live here and those who live far away. Relatives and stray people I liked. I joined Noble Circle after my treatment -- a mastectomy, chemo and radiation -- was done. My main support is my husband, Sam Love. He actually read a book on how to be a good breast cancer husband, "The Breast Cancer Husband Book."

Sandy Love Yellow Springs

- Of course early diagnosis is critical, hence the need for regular screening. The earlier the disease is found the more likely it will be cured. Regardless, local disease is always potentially curable, but the less advanced the better.

Appropriate initial treatment of early disease is critical to its cure rate. A multidisciplinary modality treatment is often needed. That is treatment that includes surgery with or without radiotherapy. Systemic therapy is often needed, this includes endocrine therapy(hormonally based), and/or chemotherapy, in certain types the use of Herceptin is needed. The appropriate testing of the tumor is needed to determine the systemic therapy. This includes testing for hormone receptors, Her-2 neu and Oncotype Dx.

In young patients and those with a family history, an evaluation for genetic testing is recommended.

Dr. Basel Yanes, medical oncologist

- When I was first diagnosed with triple negative breast cancer at the age of 38, I was told by a cancer survivor that it would be the best and worst year of my life. Turns out, she was right, but instead of a year, it was three and a half years of my life. What made it the worst is pretty obvious: treatments that caused me to be nauseous, tired and bald. A lot of things combined to make it the best: Tecumseh's Volley for a Cure match in my honor that raised almost $6,800; complete strangers telling me to keep fighting; congregations all over the county praying for me; the great staff at the Spring-field Regional Cancer Center, where I received my treatments; random gifts on my desk at work; and Shaw-nee's football team wearing pink and asking me to join in a post game victory picture. It was truly amazing what people did for me. There were also things that affected me that are harder to put into words. I guess I would describe it as an overwhelming feeling of love and support from my boyfriend, family, friends, and community.

There were many things and people that helped through my battle, but if I had to give some advice to a new breast cancer patient, it would be to ask for and/ or accept help. At first, that was hard for me because I really didn't want to let cancer "rule" my life. I wanted to do everything that I had always done and as a mother of two who worked full time, there was always something to do. My everyday life and cancer quickly became too much for me.

Cancer does have a way of putting things in perspective and is also a great reason to stop doing the things that weren't meaningful to me or my family. Then Willi, one of my co-workers at Tecumseh High School, stepped in. She organized weekly meals and a house cleaning schedule. That was something I would never have dreamed of asking for, but Willi saw a way to help and offered. I accepted, but was very hesitant. I will also admit, at first, I would clean before they came over! But I soon realized that they didn't care what my house looked like when they got there, they just wanted to do something to help me. My co-workers cleaned and cooked for my family for almost two years. What an impact that made, doing something that had to be done and leaving me with the time and energy to do the things I wanted to do. It is amazing how a home cooked meal and a clean house can make you feel. The point is, people do want to help you and they aren't sure what they can do for you. Tell them what you need and then accept their help.

Kristie Talley, Springfield

My best advice for women who are newly diagnosed with breast cancer:

I would advise the sister not to blindly follow the advice of her doctor. The body speaks to us, and I believe we should listen to our intuition, weighing it against our own research and against the doctor's advice. For me, my own oncologist is the best there is, but I still discuss alternatives to his advice, and he listens and gives me options, if available. But the final decision is always mine.

A little of my own story:

In 2001, my nipple was leaking. My gynecologist said not to worry, it was natural for my age. Three times throughout the next two years, I questioned the leakage, always getting the same response. Then in 2003, I discovered a lump in that breast. Since I had breast implants I was told that it was probably scar tissue from the implants. Accepting this, I let another three months go by.

You can guess the rest of the story: stage 3 breast cancer, which turned to stage 4 (metastatic) in 2007 and returned in 2010. Although my PET scans are not clear, I have recently decided to stop chemo, since I value the quality of my life right now. I have not given up on a possible cure, but I have chosen to follow an alternative route based on supplements and diet. My oncologist is more than willing to continue monitoring me as I take my own path, for which I am so grateful. Whether this alternative works or not, it is not as important to me as being able to follow my own heart and mind; and I know that there are still other alternatives to try.

Sandie Scott, Washington Twp.

Advise for women going through breast cancer ... keep putting one foot in front of the other. Ask "What's next?" Join a support group and do things you never thought of doing.

Gail Carlson, Centerville

As a nutrition and wellness educator, I feel it's important that women have some level of understanding of the role nutrients play in our health. I know nutritional "therapy" and nutrients in general are considered "alternative" in terms of their use in chronic diseases, but there is solid evidence that at least one nutrient in particular plays a significant role in the possible prevention and treatment of breast cancer. The nutrient is vitamin D3. It's really not a simple nutrient -- it's a prohormone that converts to the most potent steroid in the human body, affecting literally hundreds of genes and their expression.

I have been involved with the Noble Circle Cancer Project for women since the first group met several years ago (my role is nutrient education), and my experience is that women have little access to this most valuable information. In my opinion, women should consider supplementing with 2,000 IUs to 4,000 IUs of vitamin D3 daily, as well as including oily fish like salmon and sardines, cage-free eggs, and small amounts of whole grass-fed dairy products in their diets. For more information, go to pubmed.org, which is the site of biomedical literature and peer reviewed studies from multiple medical journals, and search out D3 and breast cancer.

Lori Kelch, MS Nutrition and Wellness Educator, Spring Valley

I was only 13 years old when I lost my mother to breast cancer, and it was the hardest thing I have ever been through in my life.

I really think what made it easier for me through the rough time was that my parents never lied to me about what my mom was going through at the time. Also I felt that my parents did a wonderful job on making sure that I was well-educated about the different terms and procedures that the doctors were talking about putting my mother through to try and save her.

My best advice to a parent that is dealing with this is keep your child involved in anything that has to do with making you better and never hide the truth from them. It will be hard on them, but at least they know what to look forward to at all times.

April Clouser, Trotwood

As a research nurse at Atrium Medical Center I might say that you may want to think about taking part in a clinical trial. Clinical trials may be a treatment option for you. Choosing to join a clinical trial is something that you and your doctors and nurses decide together. Research is important in discovering new treatments for breast cancer and other diseases.

The studies that we offer are sponsored by the National Cancer Institute. My goal as a research nurse is to provide patients with cutting-edge cancer care with a personal touch by offering hope and support through the journey.

Sandy Fletcher RN, Atrium Medical Center

The amount of information on cancer available through books and Internet sources is absolutely astounding and often contradictory. It can be extremely difficult to determine if a particular source is reliable or if the information provided applies to your situation. These sources are usually better for generating questions than for finding answers. The most important resource for information about your cancer is your treatment team. Be sure to select physicians that you are comfortable with and who respond to your concerns. It is often helpful to make a list of questions about things you have read or heard about to discuss with your health care providers. Remember that any information you receive, particularly information about prognosis, represents an opinion and not necessarily a statement of fact. Most importantly, take advantage of this situation to refocus your attention on those things in life that matter most; faith, family and friendships.

Charles L. Bane, MD, Medical Oncologist, Dayton Physicians Network

My mom was first diagnosed with cancer 11 years ago. The mammogram did not pick it up. She found the lump from a breast exam. My advice to all women is to do monthly breast exams.

My sisters and I did not know how prevalent breast cancer is among women. We started getting tested 11 years ago although we were only in our 30s. We had no clue that although mom did not drink or smoke that this disease could attack.

Cancer does not have to mean a death sentence. My mom lived 11 more years after the lumpectomy and is still a survivor.

Detection is key. We encourage all women to be tested and keep the faith.

Toni Perry Gillispie, Dayton

Contact this reporter at (937) 225-2440 or MMoss@Dayton DailyNews.com.

Illustrations/Photos:
Caption: April Thomas with her son, Dustin Young. CONTRIBUTED
PHOTOS; Marsha Froelich; Amy McKenna; Lauren McClure; Joan Scott;
Kristie Talley of Springfield with her children.; The Noble sisters:
standing, Gail Carlson, Sharon Westbrook, seated Anne McCusker, Deb
Mann and Beckie Kindred. CONTRIBUTED PHOTOS; Dr. Basel Yanes; Lori
Kelch; Sandy Fletcher; Dr. Charles Bane; Toni Perry Gillispie and
her mother, Katerishia Perry

(Copyright 2011)

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Meredith Moss Staff Writer. "Those touched by breast cancer share advice ; For this year's Pink Paper, we've invited those touched by breast cancer to share their advice and reflections with the newly diagnosed. We lead off with." Dayton Daily News. 15 Oct. 2011: D16. eLibrary. Web. 02 Feb. 2012.

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