Collaboration: Komen Helpline

how-we-collaborate-mtp-pink1-877 GO KOMEN (1-877-465-6636)

helpline@komen.org

The Susan G. Komen® breast care helpline offers breast cancer education, psychosocial support and information about resources callers need to cope with breast cancer issues.  The helpline also serves as an expert resource and support system, helping patients and families to problem solve by providing information and emotional support, as well as access to Komen’s excellent resources.  The helpline service hours are 9 am – 10 pm ET, Monday – Friday.

A helpline specialist may also assist in the following ways:

  • Help callers think about and develop a list of their needs in order of priority,
  • Reassure callers that their feelings and concerns are typical—that they are not alone in the way they feel
  • Educate about breast cancer issues and coping mechanisms,
  • Evaluate the need for emotional support,
  • Teach/coach the client how to better communicate with their health care team; and
  • Help callers write a list of questions and find ways to remember the answers.

All calls and emails are answered by a trained and caring staff member in English and Spanish, Monday through Friday from 9:00 a.m. to 10:00 p.m. ET. TTD is also available.

Komen does not provide medical advice or referrals to physicians, medical facilities or other services.

Advertisements

Breast Cancer Survivorship: Post-Diagnosis/Screening and Recurrence

bc-survivorship-mtp-pinkBreast cancer survivors have an increased risk of getting a new breast cancer compared to those who have never had breast cancer. That is why it is important to get the follow-up care your doctor recommends. With proper follow-up, your doctor can keep track of how you are doing. This includes checking for and treating side effects. Follow-up care can also help ensure any recurrence of breast cancer can be found early when treatment is most effective.

The National Comprehensive Cancer Network offers these guidelines for follow-up of breast cancer treatment:

  1. Have a mammogram every 12 months (for women treated with mastectomy). (For women treated with lumpectomy, have a mammogram six months after radiation therapy ends, then every 12 months.)
  1. Have a physical exam 1-4 times a year (depending on your situation) for 5 years, then every 12 months.
  1. Have a pelvic exam every 12 months.
  1. Have a bone health exam every one to two years, depending on a person’s risk factors.

Follow-up Tests

Depending on the symptoms, blood tests (including tumor marker tests) and imaging tests (including bone scans, CT scans, PET scans and chest X-rays) may be used to check for metastases. Using these tests to check for early metastases in people with no symptoms of metastases does not increase survival. For people with no symptoms of metastases, blood and imaging tests (other than mammography) are not a standard part of follow-up care.

Learn more about medical care after breast cancer treatment: http://ww5.komen.org/BreastCancer/MedicalCareAfterTreatment.html

Breast Cancer Survivorship: Post-Diagnosis/Breast Reconstruction

bc-survivorship-mtp-pinkBreast reconstruction can help restore the look and feel of the breast after a mastectomy. Performed by a plastic surgeon, breast reconstruction can be done at the same time as the mastectomy (“immediate”), or at a later date (“delayed”). Many women now get immediate breast reconstruction.

However, the timing depends on your situation and the treatment you will have after surgery. Not all women can have immediate reconstruction. It is important to discuss your options with your plastic surgeon, breast surgeon and oncologist (and your radiation oncologist if you are having radiation therapy).

There is no one best reconstruction method. There are pros and cons to each. For example, breast implants require less extensive surgery than procedures using your own body tissues, but the results may look and feel less natural. However, there are fairly few complications with any of the current techniques, especially when a woman is properly selected for a procedure.

Most breast reconstruction methods involve several steps. Both immediate and delayed reconstructions require a hospital stay for the first procedure. However, follow-up procedures may be done on an outpatient basis.

Learn more about breast reconstruction: http://ww5.komen.org/BreastCancer/BreastReconstruction.html

Survivorship: You Are Not Alone

bc-survivorship-mtp-pink

Other breast cancer survivors share similar fears and concerns. No matter how long ago you completed treatment and no matter the struggles you face, there are likely other people who have been where you are today.

Sharing experiences and advice with other survivors may be helpful. You can find other survivors through Komen’s Message Boards.

Your doctor can also tell you how to find a local support group.

After treatment ends, there are many ways to stay active in the breast cancer community. Getting involved can be personally rewarding and can impact the lives of others.

Survivorship: Psychosocial Factors and Breast Cancer

bc-survivorship-mtp-pinkOne in eight women in the U.S. will be diagnosed with breast cancer in her lifetime, and more than 40,000 women and 440 men in the U.S. will die from the disease this year.

It is no surprise that, when faced with this news, women possibly experience shock, fear, sadness, disbelief or other feelings of psychosocial distress. Many women are able to adjust to and manage the disease, survivorship and their “new normal.” Some women will experience times of persistent psychosocial distress and would benefit from interventions. Intervention is important because distress can interfere with a woman’s ability to cope with cancer treatment and can extend along the continuum from common feelings of vulnerability fear, and sadness, to true depression, anxiety, panic and feeling isolated.

Coping with a Breast Cancer Diagnosis

  • Learn about breast cancer at your own pace. Get information about clinical trials, treatment options and side effects. Doctors can make suggestions, but decisions should be made together.
  • Seek professional help if you need help managing your issues with breast cancer and how to cope with your feelings.
  • Talk to your doctor honestly about your breast cancer journey.
  • Be patient. Coping with breast cancer requires time, acceptance, a fighting spirit and support.
  • Lean on your network of family and friends. They can help:
  • Lend support from diagnosis through treatment and beyond
  • With day-to-day tasks
  • Gather information for you about breast cancer

Coping with Fear of Recurrence

It is normal to have thoughts and concerns about breast cancer coming back breast. Fears of recurrence often peak right after treatment, but they can happen at an time. You can take control of your fears and learn effective triggers and coping strategies to keep these fears from consuming you. Some of these strategies include:

  • Get and stay informed. Learn about your cancer and risk of recurrence, continue your follow-up-care plan and take care of yourself.
  • Remove any blame. Never blame yourself for your cancer diagnosis. Cancer does not choose to punish people and it doesn’t discriminate. Cancer can happen to anyone.
  • Talk to your doctor and begin an appropriate exercise program. It can improve your mood and make you feel healthy, confident and strong.
  • Find ways to relax like yoga, meditation, prayer, etc.
  • Acknowledge your feelings. Talk to family, friends or other survivors. Journal, craft, or find creative ways to give voice to your emotions.
  • Focus on the positive. Find ways to stay hopeful and use your energy to stay as healthy as possible.
  • Control what you can. Empower yourself by taking an active role in your healthcare team.

Learn more about breast cancer recurrence and maintaining quality of life: http://ww5.komen.org/AboutBreastCancer/QualityofLifeTopics/SurvivorshipTopics/SurvivorshipTopics.html

Survivorship: Intimacy

bc-survivorship-mtp-pink

Being diagnosed with breast cancer can take a physical toll on your body, not to mention your intimate and sexual health. Breast cancer and treatment for breast cancer can sometimes make it difficult to be sexual and intimate with another person, and that is okay and natural.

Self-Image

A woman’s breasts symbolize so many things, including motherhood, sexuality and being a woman. For some women, breasts now represent cancer. Most women, and their partners, will need to take time to grieve the loss of (or changes in) their breast(s).

Joining a support group may help you cope with the changes in your body and self-image. Remind yourself that healing takes time and at some point, you will become more comfortable with your new normal.

Accepting yourself as you are is all part of the process.

How to Talk with Your Partner

While there is no such thing as a perfect time to talk, certain times are better than others. Choose a moment when you are alone and relaxed. When you feel comfortable, give yourself and your partner permission to talk about your feelings, both good and bad. Above all else, be honest.

Your biggest fears. You may not feel pretty or worry that your partner finds you less attractive. You may be afraid your partner will reject or leave you due to your breast cancer.

Your partner’s fears. Your partner may be afraid of physically hurting you during sex. He/she may be confused or unsure of the best way to show support and affection and is waiting on you for cues on when to resume an intimate and/or sexual relationship.

Birth control. Treatments such as radiation or chemotherapy and tamoxifen can cause birth defects, so it is import to talk to your partner about birth control. After treatment, do not assume that you can no longer become pregnant.

Your “new” sex life. Breast cancer may change what you like to do and how you like to be touched during sex. You may not even want to have sex for a while, so it is important to talk to your partner about how you are feeling.

Other Things You Can Do

Get romantic. Bring romance back by planning a candlelight dinner, taking a bubble bath or other romantic gestures. Take the time to nurture your sexuality.

Go slow. Kissing and touching can provide pleasure and help with intimacy. Do not rush into something until you feel comfortable with it.

Get comfortable. Sex may be painful because of changes in your body, due to breast cancer treatment.

Try using water-based lubricants just before sex. To help with vaginal dryness, try an estrogen-free vaginal moisturizer. These products are available over the counter without a prescription. Since they do not contain estrogen, they’re safe for breast cancer survivors. If vaginal dryness is still a problem, contact your doctor.

Try something different. Change your sexual routine- try new things and have fun!

Get some advice. Consider seeking advice from a marriage counselor, sex therapist or joining a support group. You can go with your partner or by yourself.

Make sure to share this information with your partner. Getting the intimacy you need should not be your responsibility alone.

Learn more: http://ww5.komen.org/BreastCancer/SexandSexuality.html

Breast Cancer Survivorship: Family/Co-Survivor Support

bc-survivorship-mtp-pinkIt doesn’t take time-consuming and heroic gestures to be a good co-survivor. Sometimes being there and listening is all that matters. Here are just a few ideas of what co-survivors can do to help a breast cancer survivor:

  • Run errands
  • Send a “Thinking of You” card
  • Take her/him to an appointment
  • Create an online calendar to organize meal deliveries, rides and other tasks
  • Bring together family, friends and coworkers to help support and care for your loved one through a caring social network and planner. CaringBridge provides sites where friends and family can stay connected and updated on someone’s health event and leave messages of hope and encouragement. The planner also gives you the power to set a community of support in motion by organizing meals, tasks and other helpful activities.

Advice for the Caregiver

Communicate: Keep communication between you and your loved one open and honest. Understand that he/she will often worry just as much about you as you do about him/her.

Understand: Learn more about the experiences of others diagnosed with breast cancer.

Talk Medicalese: Learn to better communicate with your loved one’s health care team. This can be a big help when you accompany your loved one to appointments.

Talking to Your Children About Your Diagnosis

Each child and each family is unique, and helping children cope with a loved one’s diagnosis can present many challenges.

However you decide to tell your children, be as open and honest as possible no matter how hard it may seem. You decide how much you want to say. Remember that children, just like adults, will fill in wherever you leave gaps. And because children may not know as much as adults, it is more likely that what they fill the gaps with will be wrong.

Encourage your children to talk to you and to ask questions. Giving honest, realistic answers to their questions will help lessen their fears. If you are going to be gone for a few days, if you are getting sick from the treatment or if you are losing your hair or a breast, let your children know why this is happening. Explain anything that changes their daily routine.

It is a good idea to let your children’s teachers know what you are going through — especially for younger children. The teachers may be able to help the children cope if they spend most of the day at school.

Finally, just as your children depend on you, you can depend on them too. They can be, and probably want to be, a source of support for you. They will want to listen to you, hug you, kiss you and spend time with you. Let them.

Learn more: http://ww5.komen.org/BreastCancer/FriendsampFamily.html