My workshop at the 2014 PBCC conference! Oct. 5 in Harrisburg, PA

Breast cancer in young women: coping with unique issues

Listen here: Breast cancer in young women: coping with unique issues

My workshop went very well - better than I expected, actually! I had a lot of group participation and met so many amazing women! We didn't even get through all of the content (which is good!) Thanks to the PBCC for this incredible experience and opportunity! My workshop intro and outline are below.

Me at the PA Breast Cancer Coalition's 2014 conference, where I presented a workshop on the unique issues faced by young women with breast cancer, such as body image and fertility.

Good morning! My name is Marjorie Miller, and I am so honored to be here today. I am not a doctor or an expert; I am a young breast cancer survivor and I am here to bring to light some of the unique and sensitive issues young women with breast cancer face, such as not being taken seriously by doctors and dating or starting a family.

I was diagnosed when I was 26, while I was planning my wedding. Because I have a personal history of cancer, prior to the breast cancer, when I found a lump it was taken seriously and within days I was getting an exam followed by a fine needle aspiration. This led to a quick diagnosis.

Unfortunately this isn't the case for all young women, and many are dismissed by their doctors because they are "too young to get breast cancer.” Some go months or years before they are scheduled for a follow up.  I want to help make sure this isn't the case anymore. Young women can and do get breast cancer. I know from experience. And I want to share my experiences and provide a platform to address these issues that aren't always addressed when talking about breast cancer, to hopefully change the dialogue and make a difference. Thank you!

What Is Different About Breast Cancer in Younger Women?

Diagnosing breast cancer in younger women (under 40 years old) is more difficult, because their breast tissue is generally denser than the breast tissue in older women. By the time a lump in a younger woman's breast can be felt, the cancer often is advanced.

In addition, breast cancer in younger women may be aggressive and less likely to respond to treatment. Women who are diagnosed with breast cancer at a younger age are more likely to have a mutated (altered) BRCA1 or BRCA2 gene.

Delays in diagnosing breast cancer also are a problem. Many younger women who have breast cancer ignore the warning signs -- such as a breast lump or unusual nipple discharge -- because they believe they are too young to get breast cancer.

Many women assume they are too young to get breast cancer and tend to assume a lump is a harmless cyst or other growth. Some health care providers also dismiss breast lumps in young women as cysts and adopt a "wait and see" approach.

(WebMD)

Most breast cancers are found in women who are 50 years old or older, but breast cancer also affects younger women. About 11% of all new cases of breast cancer in the United States are found in women younger than 45 years of age. While breast cancer diagnosis and treatment are difficult for women of any age, young survivors may find it overwhelming.

Centers for Disease Control and Prevention (CDC.gov)

According to the Young Survival Coalition, (www.youngsurvival.org),

Young women CAN and DO get breast cancer. It is estimated that more than 250,000 women diagnosed with breast cancer at age 40 or younger are living in the U.S. today. More than 13,000 young women will be diagnosed this year. While breast cancer in young women accounts for a small percentage of all breast cancer cases, the impact of the disease is significant.

Statistics and Disparities (Young Survival Coalition)

Numbers to Open Your Eyes:

Facts and Statistics

If popular opinion were true—that young women don’t get breast cancer—YSC wouldn’t be here. We all know the truth, though—young women can and do get breast cancer. And the facts back us up. Here are some startling stats to wake us all up—and get us ready to defeat this disease together.

Women Just Like Us:

• You’re not the only one: Each year, approximately 70 thousand men and women age 15 to 39 are diagnosed with cancer in the US.1 Breast cancer is the most common cancer for women in this age group.2
• Women ages 15 to 34 and 35 to 54 die more frequently from breast cancer than any other cancer.3
• In 2011, the American Cancer Society projected 230,480 new cases of invasive breast cancer among U.S. women annually, as well as an estimated 57,650 additional cases of in situ breast cancer.4 It is estimated that 13,110 cases of breast cancer will be in women under age 404 and approximately 26,275 women will be under 45 years of age.5
• Every year, nearly 1,200 women under age 40 die from breast cancer.4

A Different Enemy:

• Compared to older women, young women generally face more aggressive cancers and lower survival rates.4,6 More and more evidence tells us that breast cancer before age 40 differs biologically from the cancer faced by older women.7

Our Unique Challenges:

• No effective breast-cancer screening tool yet exists for women ages 40 or younger.
• Young women with breast cancer struggle with many issues either not present or much less severe in the lives of older women, including:
• The possibility of early menopause
• Effects on fertility
• Questions about pregnancy after diagnosis
• Concerns about body image
• Challenges to financial stability
• Since breast cancer occurs at a much lower rate among young women than in our older counterparts, we remain underrepresented in many research studies.7

Your Background, Your Challenges: Health Disparities

• African American women under age 35 have rates of breast cancer two times higher than Caucasian women under age 35.8
• African American women under age 35 die from breast cancer three times as often as Caucasian women of the same age.8
• Researchers believe that access to healthcare and the quality of healthcare available may explain these disparities, although scientists continue to investigate. Research also shows that young, African American women are more likely to get aggressive forms of breast cancer than anyone else.9

THE ISSUES:

Body image

• Emotional and physical effects of surgeries, chemotherapy and radiation: what are the concerns? How to deal with them, and why it’s different in younger women.
• Reconstruction options: prosthetics, different types of implants, no reconstruction, nipple reconstruction options; feeling “whole” again.
• While many women choose no reconstruction, oftentimes young women feel the need, as I did. With my reconstruction I have gained a lot of self confidence. My plastic surgeon worked with me to create a size that wouldn’t feel out of place on my body.
• My first “go round” I had a right mastectomy with immediate expander reconstruction. My skin ended up ripping so I needed to get my implant removed two months before my wedding. I wore a prosthetic. bathing suit, working out.
• After some genetic testing I decided to get a prophylactic left mastectomy. To mend my right side I got a lat flap - at the same time as my left mastectomy with reconstruction. I opted for silicone implants. After six surgeries, two rounds with the expanders, I am VERY happy with the results. I chose not to have nipple reconstruction on the right, but was presented with many options. I see my plastic surgeon once a year, and during my breast MRIs the doctor checks the placement of my implants and checks for any leaks.
• Exercising and yoga - discuss my experiences
• Expanders (AH!)

• Those of you with implants: please share your experiences. Silicone vs. saline; going bigger or smaller, etc.
• Beyond the breast: other effects of treatment, including hair, skin, nails. Has anyone tried the American Cancer Society’s Look Good … Feel Better program? If so, please share.

Dating and starting a family

• How to tell a significant other about breast cancer during a relationship
• How to tell a significant other about breast cancer in the past. What your body looks like now and why.
• Dating after breast cancer. Some of the issues women might face are how to tell a prospective date you have had cancer and what they might think. Intimacy and breast reconstruction. Losing feeling, pain. Personally I have not regained a lot of my feeling on my right, and I may never, and I still have some pain and tension within my chest muscles. Stretching helps, foam roller.
• IS ANYONE GOING THROUGH THIS RIGHT NOW?
• Concerns about pregnancy and breastfeeding: fertility, options for starting a family, pregnancy and its effects on a woman’s body who has been through surgeries/treatments   - I made the very personal decision to not get pregnant, and my husband and I are so blessed to have adopted a baby girl earlier this year. Our adoption story is a beautiful one! we waited less than a month for our little bundle of joy, and brought her home at 2 days old. This was my personal choice, given my history of cancer, and what my body had been through - I did not want to experience a pregnancy.
• A lot of young women face fertility problems, or are told by their doctors not to get pregnant. a lot also worry about passing along cancer genes.

Talking to friends about breast cancer, talking to your doctor(s)

• What do you need from friends? How can they provide help? (A night out, simply listening, asking or not asking questions, etc.; everyone’s needs are different)
• Addressing the “you’re too young” stimaga. It can sometimes be hard to be taken seriously - how to address these issues and how to ask for what you need.
• What do you need from your doctors? Discuss screening, breast exams, bloodwork, etc. Creating YOUR plan based on what feels right to you.
• What are some ways young women can get their message/fears/concerns across to doctors and friends?
• WHAT ARE THREE THINGS YOU WANT FRIENDS/ FAMILY TO KNOW ABOUT YOUR BREAST CANCER AND WHAT YOU NEED FROM THEM? PLEASE WRITE DOWN ON YOUR SHEET OF PAPER.
• Young women with cancer have different needs. Many have not yet been through menopause or have started a family, so treatment options need to be discussed and altered. Younger women also handle treatment and side effects differently.
• WHAT QUESTIONS DO YOU WANT TO ASK YOUR DOCTOR NOW, WHETHER CURRENTLY IN TREATMENT, OR POST-TREATMENT? PLEASE WRITE DOWN ON YOUR SHEET OF PAPER.

Life after/living with metastatic/recurrence: regaining sense of self, living with “new normals”

• After breast cancer: how are you healing physically? How has treatment affected you long-term? Regaining strength and movement.
• After breast cancer: how are you healing emotionally? How do you want to heal? How do you need to heal?
• Yoga, physical therapy, running

I had physical therapy to regain strength and movement on my right side. To this day I use a foam roller nightly and lift weights and stretch. The discomfort hasn’t gone away completely, and sometimes running and yoga is uncomfortable. But I power through and tell myself this is my “new normal.” I always inform yoga teachers of my condition before class. There are some poses I can’t do, or don’t feel comfortable trying to do, and I have to be OK with that.

• Living with metastatic breast cancer: dealing with treatment long-term, “maintaining” sense of control, living with “new normal”
• Routine screenings and checkups for life: how do you cope with the anxiety? Does the fear of recurrence ever go away?
• Recurrence: dealing physically and emotionally.
• WRITE DOWN THREE FEARS; THREE GOALS FOR LIFE AFTER BREAST CANCER; AND THREE THINGS YOU WANT TO ACCOMPLISH NOW OR LONG-TIME, WHETHER OR NOT HAVING TO DO WITH BREAST CANCER.

Managing Your Follow-Up Care (Young Survival Coalition)

After treatment ends, you still have important medical business to attend to—your follow-up care. This means regular checkups to test for recurrence (your cancer’s return) or metastasis (your cancer’s spread). Doctors also screen for other types of cancer and for any difficulties caused by your treatment. Most women have checkups every 3-4 months for the first 2-3 years and once or twice a year after that.

Take an active role in your follow-up care, and you can empower yourself to get the most out of your checkups:

Plan: Work with your doctor to plan your best care—your plan should fit your unique circumstances. You can also empower yourself by creating a Survivorship Care Plan. This is a summary of your diagnosis, treatment and recommended follow-up care. Develop or update your survivorship care plan. These tools and more can be found in YSC's Post-Treatment Navigator.

Ask questions— Bring a list of questions with you. Here are some common ones to get you started:

• What tests do I need?
• How can I relieve pain and manage other problems?
• How long will it take for me to recover and feel more like myself?
• Is there anything I can or should be doing to keep cancer from coming back?
• Do I need to worry about any side effect issues from my treatments? (Examples include bone health from hormone suppressors and heart health from anthracyclines.)

Don’t forget to ask for more resources or better explanations if you need them. Make sure you get a chance to ask all your questions: Ask the most important ones first in case your doctor runs out of time, request more time next appointment and ask if you can call. You can also bring a supportive friend or relative to take notes and ask good questions. Remember to keep your own records of your visits, too.

Additionally, you should consider keeping a copy of all tests for your own records along with detailed information about what drugs your treatment plan included.

Communicate: During each visit, tell your doctor about any symptoms, pain or physical or emotional problems you might have. Share any medicines or other treatments you’re using and discuss any changes in your family medical history, including any new cancers.

Stay Vigilant: You can play an extremely important role in checking for recurrence. Many times recurrences aren’t spotted for the first time at follow-up meetings—often women suspect or find recurrences themselves between appointments. So stay vigilant for changes to your health, and tell your doctor about anything concerning. Remember, however, that many health changes will come from something unrelated to your cancer. Talk to your doctor, and you can be certain.

Ask your doctor what rule they use for reporting a symptom. For example, they might report a symptom that lasts for more than two weeks.