Breast Cancer Survivor - Alyson

Hi! My name is Alyson. I am 41 years old and still fighting for my life. I was diagnosed with Inflammatory Breast Cancer (IBC).

While vacationing at a state park lodge with my husband and two sons, I noticed a rash on my left breast. The next morning the breast was so swollen that it would not fit inside my bra. I went home, celebrated Easter Sunday with the family and promptly called my family doctor on Monday morning. 12 days later, 18 doctor appointments later, lots of poking, prodding, and many scans and tests, I was diagnosed and had a chemo port surgically implanted into my chest and began chemo.

I was told Inflammatory Breast Cancer is the deadliest, most aggressive form of breast cancer there is, 2% of all Breast cancers. WHY ME????

Once I received the PET scan results, cancer was nowhere else in my body, I set out on a whole new path. To fight this cancer, beat it and continue to live here with my family. I have 2 sons to finish raising and see my grandchildren someday. I had chemo (Adriamycin Cytoxin and Taxol) from April thru August. Modified radical left mastectomy on September 1, and began 38 rounds of radiation treatments the end of October. I am Estrogen Negative and HER2+ which puts me at a very high risk for recurrence. I am taking weekly infusions (in my chemo port) of Herceptin to try to fight off recurrence. I was bald for nearly 8 months and will never proclaim to have a bad hair day ever again! LOL I was so sick that getting out of bed was not even an option on chemo weekends. But, my pathology report was fantastic and my genetic testing showed no genetic mutation to raise concerns.

I am very positive and have been from the start. I have talked to my cancer from day one and told it that it was not welcome in my body, and that the chemo and I were killing it. My family, friends and team of doctors have been an incredible support for me. I am incredibly blessed to have them all standing beside me every step of the way. Life is short - and cancer puts a whole new perspective on EVERYTHING! The clouds look totally different every morning and I approach life with a NEW NORMAL - never to be NORMAL again.

Life is a true gift - cherish it!!!

Family, Partner and Caregiver Issues

Trouble is a part of life, and if you don’t share it, you won’t give the person who loves you a chance to love you enough.
— Dinah Shore

When talking about breast cancer, attention is usually focused on the needs of the patient. From the time of diagnosis, through treatment and beyond, these needs change. The same is true for the people who love and care for the breast cancer patient. While the breast cancer patient is the one who deals most directly with the disease, it is important to remember that a diagnosis of breast cancer has a powerful impact on everyone who loves and cares for the patient. It has the potential to change the dynamics of many relationships. Sometimes these changes are for the better, sometimes not.

If your loved one is facing breast cancer, it is important that she know you are there for her whenever she needs you, and that she is not alone in the fight. It is helpful for you to recognize and try to understand what she may be feeling. It is just as important for you to keep the lines of communication open. Be supportive, and ask her what she needs from you. Each person and every family is different in how they deal with difficult times. Quite often, these challenges bring the family (and friends) closer together.

How can I provide emotional support?Spend time together, and offer flexibility and attentiveness. There does not need to be a reason to get together, or a list of tasks to accomplish. Watching television or a movie together can be very satisfying.

• Provide emotional space for the woman with breast cancer to work through her feelings at her own pace, and in her own way. Everyone copes differently.
• Practice good listening. Ask directly, and be prepared to hear, what she wants and needs. It is also important to find out what she does not want.
• Roll with the punches. Avoid taking things personally. Mood swings, and rapidly changing approaches to the illness, daily tasks, or friends and family, are not unusual.
• Try not to “fix” every problem. There are no easy answers to a cancer diagnosis, and sometimes people need to just know that they are being listened to.
• Be reassuring and open about offering continued support.
• Plan visits ahead of time and be on time. If you can’t make an appointment, call immediately.
• Do what you can, and avoid promising too much. If you are unable to do what you have promised, don’t let guilt get in the way of offering support or helping out in other ways. A common mistake is not getting back in touch because of personal embarrassment. An unexplained absence is worse than calling to offer different help. Give yourself a break. Everyone is trying their best, and learning as they go. Caregivers are no exception.

While it is important for you to be supportive of your friend or loved one, remember that you also have needs which require attention. In order to be a good caregiver, you need to take good care of yourself (physically, emotionally and spiritually). It is very easy to become so overwhelmed by the situation that you find yourself operating on “auto-pilot.” You may not even recognize that you are approaching burnout. When you reach this point, it may become difficult to be a supportive caregiver for your loved one.

How can caregivers take care of themselves?

• Try to find someone to talk with about your own feelings. Sometimes there are support groups in your area specifically for family members, friends or partners.
• Talk to other caregivers. They can offer support and information about how they handle being the caregiver in their family.
• Do not suppress your emotions. It is okay to cry when you need to. Acknowledge your own fears and feelings as a normal response, not a weakness, and find ways to deal with them.
• Take some time to relax or exercise or spend time with your friends.
• Take time to recharge your batteries. Continue to do whatever brings you peace, comfort and happiness as you go through the process of caring for your friend or loved one. And remember to leave the guilt behind.
• Don’t try to handle everything yourself. When someone offers to help, let them lighten your load.
• Keep your sense of humor. It can help reduce tension and uplift everyone, especially in difficult times, even if only for a few moments.
• Take advantage of resources available. Whether you are an immediate family member or a relative, friend or co-worker of the breast cancer patient or survivor, your life will be affected and changed by your experience in dealing with and caring for her or him. There are many resources you can turn to for help. Sometimes the help will come naturally from within the relationships you have. Sometimes it will come from strangers who are traveling on similar paths. Other times, you may need to turn to professionals to help you cope with your own feelings and emotions.
• We hope the resources we provide help you through the challenge of knowing and caring for a friend or loved one who has breast cancer.
• Recognize The Signs Of Burnout
  -Irritability. You snap at people for small things; you lose patience easily.
  -Withdrawal. You don’t stay in touch with friends or participate in previously enjoyed activities.
  -Fatigue. You are constantly tired and exhausted.
  -Insomnia. You have a hard time getting to sleep, staying asleep, or sleep restlessly.
  -Apathy. You feel numb and must force yourself to do routine caregiver tasks.
  -Appetite Changes. You eat more than you used to or don’t feel like eating anything.
  -Increased Substance Use. The only relief you can get is from alcohol, drugs or smoking.
  -Feelings of Guilt. You think you are not doing enough or you feel resentment for the amount of work you are doing.

Breast Cancer: Early Detection

The goal of screening exams for early breast cancer detection is to find cancers before they start to cause symptoms. Screening refers to tests and exams used to find a disease, such as cancer, in people who do not have any symptoms. Early detection means using an approach that allows earlier diagnosis of breast cancer than otherwise might have occurred.

Breast cancers that are found because they are causing symptoms tend to be larger and are more likely to have already spread beyond the breast. In contrast, breast cancers found during screening exams are more likely to be smaller and still confined to the breast. The size of a breast cancer and how far it has spread are some of the most important factors in predicting the prognosis (outlook) of a woman with this disease.

Most doctors feel that early detection tests for breast cancer save many thousands of lives each year, and that many more lives could be saved if even more women and their health care providers took advantage of these tests. Following the American Cancer Society's guidelines for the early detection of breast cancer improves the chances that breast cancer can be diagnosed at an early stage and treated successfully.

What are the risk factors for breast cancer?
A risk factor is anything that affects your chance of getting a disease, such as cancer. Different cancers have different risk factors. For example, exposing skin to strong sunlight is a risk factor for skin cancer. Smoking is a risk factor for cancers of the lung, mouth, larynx (voice box), bladder, kidney, and several other organs.

But risk factors don't tell us everything. Having a risk factor, or even several, does not mean that you will get the disease. Most women who have one or more breast cancer risk factors never develop the disease, while many women with breast cancer have no apparent risk factors (other than being a woman and growing older). Even when a woman with risk factors develops breast cancer, it is hard to know just how much these factors may have contributed to her cancer.
There are different kinds of risk factors. Some factors, like a person's age or race, can't be changed. Others are linked to cancer-causing factors in the environment. Still others are related to personal behaviors such as smoking, drinking, and diet. Some factors influence risk more than others, and your risk for breast cancer can change over time, due to factors such as aging or lifestyle changes.

Risk factors you cannot change
Gender
Simply being a woman is the main risk factor for developing breast cancer. Although women have many more breast cells than men, the main reason they develop more breast cancer is because their breast cells are constantly exposed to the growth-promoting effects of the female hormones estrogen and progesterone. Men can develop breast cancer, but this disease is about 100 times more common among women than men.

Aging
Your risk of developing breast cancer increases as you get older. About 1 out of 8 invasive breast cancers are found in women younger than 45, while about 2 out of 3 invasive breast cancers are found in women age 55 or older.

Genetic risk factors
About 5% to 10% of breast cancer cases are thought to be hereditary, resulting directly from gene changes (called mutations) inherited from a parent.
BRCA1 and BRCA2: The most common inherited mutations are those of the BRCA1 and BRCA2 genes. In normal cells, these genes help prevent cancer by making proteins that help keep the cells from growing abnormally. If you have inherited a mutated copy of either gene from a parent, you are at increased risk for breast cancer.

Women with an inherited BRCA1 or BRCA2 mutation have up to an 80% chance of developing breast cancer during their lifetime, and when they do it is often at a younger age than in women who are not born with one of these gene mutations. Women with these inherited mutations also have an increased risk for developing ovarian cancer.

Although BRCA mutations are found most often in Jewish women of Ashkenazi (Eastern Europe) origin, they are also seen in African-American women and Hispanic women and can occur in any racial or ethnic group.

Changes in other genes: Other gene changes might also lead to inherited breast cancers. These genes do not impart the same level of breast cancer risk as the BRCA genes, and are not frequent causes of familial (inherited) breast cancer.

ATM: The ATM gene normally helps repair damaged DNA. Certain families with a high rate of breast cancer have been found to have mutations of this gene.

CHEK2: The CHEK2 gene increases breast cancer risk about twofold when it is mutated. In women who carry the CHEK2 mutation and have a strong family history of breast cancer, the risk is greatly increased.

p53: Inherited mutations of the p53 tumor suppressor gene can also increase the risk of developing breast cancer, as well as several other cancers such as leukemia, brain tumors, and sarcomas (cancer of bones or connective tissue). The Li-Fraumeni syndrome, named after the 2 researchers who first described this inherited cancer syndrome, is a rare cause of breast cancer.
PTEN: The PTEN gene normally helps regulate cell growth. Inherited mutations in this gene cause Cowden syndrome, a rare disorder in which people are at increased risk for both benign and malignant breast tumors, as well as growths in the digestive tract, thyroid, uterus, and ovaries.

Genetic testing: Genetic testing can be done to look for mutations in the BRCA1 and BRCA2 genes (or less commonly in other genes such as PTEN or p53). While testing may be helpful in some situations, the pros and cons need to be considered carefully.
If you are considering genetic testing, it is strongly recommended that first you talk to a genetic counselor, nurse, or doctor qualified to explain and interpret the results of these tests. It is very important to understand what genetic testing can and can't tell you, and to carefully weigh the benefits and risks of genetic testing before these tests are done. Testing is expensive and may not be covered by some health insurance plans.

For more information, see the separate American Cancer Society document, Genetic Testing: What You Need to Know. You may also want to visit the National Cancer Institute Web site (www.cancer.gov/cancertopics/Genetic-Testing-for-Breast-and-Ovarian-Cancer-Risk).