Pink
A guide to navigating options after breast surgery; assistive products, resources, information
Health challenges call for creative solutions. What will you do, who will you call, where will you go when... Your spouse or partner is facing breast surgery?
Contents 04 We’re Here To Help Finding solutions
06 Questions and Checklists
A list of questions to consider before surgery
08 Her Story
Bits of wisdom and courage from survivors
10 Breast Cancer Information Map
Use this algorithm to help navigate your breast care journey
12 Post-Surgery Information & Options
There are many helpful after-surgery assistive products that can ease discomfort and encourage healing. Explore your options.
You need information and support?
16 Fitting Experience
We are here to offer support and help you experience a more comfortable transition
17 Medicare & Insurance Guide
A guide to understanding coverage
Treatment plans and aftercare call for creative daily living solutions?
18 Headwear/Swimwear
There are many options; Explore some of them here and let us help.
19 Keeping Track
Record important information
20 Her Story/Contact Info
Make Informed Decisions It is not uncommon, when facing a diagnosis that may require breast surgery, to be overwhelmed by all the information, treatment options and pressure to make decisions that will affect the rest of your life. However, the choices to be made are critical and many times impact your short-term and often very long-term quality of life. Knowledge can empower you to make informed choices unique to you and your situation. While swift decision-making is often encouraged, time is relative and, as a general rule, you will have days, sometimes weeks to make decisions. So breathe deeply, and flip through this booklet created as a helpful resource to give you and your loved ones some peace of mind.
We look forward to answering your questions and providing the kind of products and service we would to a member of our own family.
childcare Pets meal preparation
Trying to find a prosthesis solution to fit your unique lifestyle?
7
13
15
Perhaps you or a loved one has recently been thrown into the unsettling realm of breast cancer. Or, maybe you are facing reconstructive surgery or trying to wade through the prosthetic options available. We’re here to help. The onset of illness or disability can be sudden, but a bit of education can help you make wise choices that can increase the chances of a more desirable outcome. Whether you are facing surgery or looking for support, information or effective product solutions after your surgery, we have the caring staff and expertise to help you or your loved one through upcoming challenges.
“I am so incredibly grateful for the personal care and attention I received from the fitter at the women’s boutique. She treats me like I am one of the family, and I feel so at ease.” Alexis M., Mabel, MN
4
Shades of Pink
As your community-based Women’s Boutique, we treat our clients as individuals. We work closely with doctors and caregivers to ensure the best post-surgery supply solutions. And, because we are community-minded and service-oriented, we would like to continue to provide follow-up and service whenever needed.
We will help assess your needs, answer questions and help you find solutions.
1 Get the facts
• Education is critical. Knowledge is empowering.
Finding Solutions
We’re here to help – Finding solutions
Finding solutions step by step... • Research your diagnosis and ask questions. Then ask more questions. Your diagnosis and treatment options are unique to your situation. • Enlist advocates and, if desired, seek a second opinion. • Communicate openly with your health care providers.
2
• If a nurse navigator is available, take advantage of this valuable resource.
Make contact
• Call us, your breast care consultants, to find out what support, supplies, product solutions and assistive services are available. • Understand what your insurance plan offers and budget allow. • Discuss needs and circumstances with family, friends and caregivers.
3
• Enlist psychological and emotional support. (Counseling services, support groups, etc).
Preparing for surgery
• Schedule an appointment with your breast care consultant or certified mastectomy fitter to explore all your postsurgical needs. • Explore and discuss thoroughly your surgical and recovery options. If reconstructive surgery is in the plans, review the procedure and expected outcomes thoroughly with your health care provider.
4
Post-surgical recovery and ongoing support through treatment
5
Follow-up support and products
• Obtain post-surgical garments, skin care and lymphedema products that can help make recovery swifter and more comfortable. Ask us; we are here to help. • Are there accessories that might make your recovery more comfortable? • Research and build awareness of the many products available that could enhance your quality of life throughout recovery and treatment. Head wear, special bras and undergarments, compression wear, shower protection, skin care and more are available to ease your transition. Ask us, we are here to help and support you. • Once release is obtained from your health care practitioner, take time to explore other bra styles, swim wear, lingerie, head wear, etc. • Keep all information organized with the “Stay in Touch” section at the back of this book. • Call us with any questions or concerns. Shades of Pink
5
• What kind of surgery is being recommended? • Partial, full or bilateral mastectomy? • What are the risks involved with this surgery?
Pre-surgery Checklists
Questions to ask
Before initial or reconstructive surgeries, here are just some of the questions you may want to consider asking...
Preparation/Checklists Research tells us that the most satisfied clients are those who actively participate in their treatment process. It is important to allow yourself time to consider all the options available to you. If you feel uneasy about the way your questions are being answered, seek a second opinion. Use this handy checklist to help organize daily tasks and items that need attention before surgery.
• If I choose not to have the surgery, what are the risks to my health? • Why was this surgery recommended for me? • What type of incision will I have? • Will lymph nodes be removed? If so, how many do you expect will be removed? • What are my options for anesthesia?
childcare
Make arrangements with work
• Will you provide follow-up, or will I have a different physician providing aftercare?
Pets
Get second opinion
meal preparation
Research/explore aftersurgery options
Make appt with breast care consultant or certified fitter
Connect with support group
Transportation to treatments
Schedule appt with counselor
Check insurance coverage
Chat with family and friends about support needed
• What kind of follow-up care will I need? What about adjuvant therapy? • Are there symptoms I should be wary of? • Am I a candidate for reconstructive surgery? • What type of reconstruction is recommended for me? • Do you have photos and testimonials from other reconstructions you have done? • How long will an implant last? • Will weight gain or loss affect the look and feel of the reconstruction? • How much pain can I expect from the surgery? • Will I require more than one surgery? • What restrictions will I have on normal activities while recovering? • What will I need at home to care for the drains and surgery site? • What can I do to help prevent or manage lymhedema?
6
Shades of Pink
Items to have on hand prior to surgery: insurance card(s), identification, list of medications taking currently, drug and food allergy list. Helpful Tip: When recovering from surgery, make the most of your hospital stay by tapping into the resources available there; support groups, counseling services, self-care information, names and numbers of certified fitters, breast care specialists and women’s boutiques in the area, or home medical equipment and supply companies.
Shades of Pink
7
says adamantly. “Know the type of cancer you have and take the time to learn about the options available to you. “Fear can keep us from making decisions that are in our best interest, and breast cancer is scary! Take the time to do some planning. Once you have a plan, the fear becomes more manageable and things start to come into focus.”
“Once you have a plan, the fear becomes more manageable and things start to come into focus.”
"They told me there was a 40 percent
chance of recurrence,” Jill recalls. “That was hard to hear. I decided pretty quick that I wanted to eliminate as much of that chance as possible.”
“I saw a psychiatrist relatively early in the process and that was incredibly helpful,” Tracey shares. “It helped me sort through all the different emotions I was feeling, including the fear, and it should be part of any good treatment plan.” Tracey used a planner to keep track of appointments, medications, contact information and more. “I used it to record questions, and key events,” she says. “And I used the voice recorder on my phone to record doctor visits. It’s all so overwhelming, and these things helped me keep track of all of the information being thrown my way. “Continue to research every step of the process,and look for a medical community that practices treating the whole person, not just the disease. “And ask for help! Now is the time for YOU to be the receiver!”
8 Shades of Pink
Tracey
Although Jill was certain a bilateral mastectomy was the right choice for her situation, the physical and emotional toll of the surgery was significant.
Jill
“I knew a physical part of me was going to be gone,” she says. “And, that messes with your identity big time. The first shower after surgery was tough...the first time I looked down? I just kept pushing through it all. I held on to that fighter mentality.”
"I just kept pushing through it all. I held on to that fighter mentality." “I was so appreciative of the resources and support available,” Jill shares. “Our local Beyond Pink support group was and still is a big part of my experience, and I am so grateful for the women there. They helped from the very beginning, with things like ‘How to tell your family,’ and have been steady support throughout the whole process.”
Shades of Pink
9
Her Story
Tracey 53 years young Invasive Lobular Carcinoma DCIS and LCIS Bilateral Mastectomy Reconstructive Surgery
Her Story
Jill 48 years young Invasive Ductal Carcinoma Bilateral Mastectomy Reconstructive Surgery
“Y ou must become your own best advocate!” Tracey
Navigate your journey
Life situations change. Sometimes overnight, previously healthy, independent people find themselves thrown into the medical community and all its complex grandeur. When faced with a breast cancer diagnosis, there are complicated decisions to be made and treatment options to sort through. Use this algorithm as a guide to the reasonable expectations from the medical community, and to the options available to you throughout your journey.
DIAGNOSIS REFERRAL Clinic appointment letter to include directions, hospital/ clinic details
SCREENING
• Breast Cancer- diagnosis and treatment information
DIAGNOSTIC TESTING
• Core client information • Contact details for Nurse Navigator
• Mammogram • Core Biopsy • Excision Biopsy • FNA (Fine Needle Aspiration) Have these limitations • Ultrasound been remedied?
• General support: Information relating to: ° Emotions, communications and relationships ° Finance and employment ° Social services ° Complementary therapies ° Healthy living/ lifestyle
FURTHER TESTING
Admissions Letter and details of surgical procedure.
Breast reconstruction
FOLLOW UP
TREATMENT CHEMOTHERAPY General and specific drug information, including side effects, temperature monitoring PICC and central line information.
TREATMENT RADIOTHERAPY General and site-specific treatment information including side effects.
• Signposting to information for local and national support groups. Further information (if appropriate)
• MRI/PET Scan • CT Scan • Bone Scan • Sentinel Lymph Node Biopsy • Stereotactic Biopsy
TREATMENT SURGERY
Navigation
Navigation
Breast Cancer Information Map
Individual Follow-up Plan Further information (if appropriate)
END OF TREATMENT
• Family Information • Breast Reconstruction
Further support and information on survivorship and rehabilitation.
• Breast Prosthesis • Menopausal Symptoms and Breast Cancer • Bone Health and Osteoporosis
TREATMENT HORMONE THERAPY General and specific treatment information including side effects.
RECURRENCE/ SECONDARY CANCER
TREATMENT BIOLOGICAL THERAPY General information and specific drug information including side effects.
TRIALS
Information regarding a specific trial may be given at any time during the your journey. SUPPORTIVE AND PALLIATIVE CARE
10
Shades of Pink
Shades of Pink
11
After your surgery
Right after: Six weeks or less
A few words about lymphedema
Comfort is key. A little planning ahead before your surgery can help make those first weeks after surgery a bit more comfortable. Find a certified fitter and discuss which of the post-surgical garments may be the best fit for you and your unique situation.
Lymphedema is seen in 50 to 65 percent of breast cancer sugeries... Women who have had an axillary lymphadenectomy or who undergo radiation therapy, are especially prone to lymphatic fluid retention. With lymph nodes damaged or removed,
Leisure Bra A leisure bra offers a relaxed fit and is designed with breathable cotton and spandex, which makes it ideal for post-surgical or leisure wear.
lymphatic fluid often builds in skin tissue and leads to swelling in the arm or surgical area. Lymphedema causes general discomfort, slows the healing process, and getting clothing to fit properly becomes a challenge.
Compression Bra Compression wear offers just enough gentle pressure and support to stabilize and maintain breast shape after surgery and can help prevent or control lymphedema. Front zipper or Velcro closure and Velcro straps make it easier to take on and off, while providing a relatively smooth look underneath clothing. Silver postsurgery compression bras contain X-Static silver fiber to aid the healing process. Ask us; we are here to help.
There are lymphedema therapists available to help redirect the fluid flow, there are self-massage techniques that help between therapy sessions, and there are special compression vests and sleeves available that help keep swelling to a minimum. Ask us for information and assistance with finding a compression garment that will best suit your needs. We offer private consultations and fittings, and can come to you.
Non-silicone Breast Forms Non-silicone breast forms are optimal for temporary post-surgical recovery needs. The weighted Memory foam molds to the contours of the body . We are here to help you find the forms that work best with your unique situation.
There are special compression vests and sleeves available that help keep swelling to a minimum. Ask us; we are here to help.
Drain Pouch Soft pouches that attach to any bra or cami with Velcro hooks. These pouches hold the post-surgical drain bulbs necessary after surgery
12
Shades of Pink
After Surgery
After Surgery
After your surgery
Shades of Pink
13
After your surgery
Options in post-surgery wear...
Options in breast forms...
There are a variety of bras and camis available that can help restore confidence and appearance... There are bra styles that fit your unique postsurgery shape and size. We can help assess your situation and help you find the bra(s) that best fit your body, breast type and lifestyle. • Post-surgical Compression Bras • Full-Figure Bras • Seamless Bras • Casual Bras • Pocketed Bras • Sport and Leisure Bras • Camis • Matching Panties and more... Note: Medicare provides partial reimbursement for breast forms, bras and camis, regardless of when you had your surgery. Ask us. We are here to help.
14
Shades of Pink
After Surgery
After Surgery
After your surgery
Breast forms are available for various body and breast types: for recovery, every day wear, swimming and more... Most forms are made of silicone. It mimics the feel and weight of breast tissue. Foam forms are usually used post-surgery during the healing process. • Foam Forms • Standard Silicone • Lightweight Silicone • Ultra Lightweight Silicone • Conformable Gel Silicone • Partial Breast Forms • Shapers and Shells • Swim Forms
Shades of Pink
15
Medicare & Insurance
Fitting Experience
A Guide to Medicare & Insurance Both Medicare and private health insurance plans partially pay for post-surgical garments, breast prostheses and bras; however, some items are not covered by Medicare or insurance. This guide will help you understand Medicare guidelines, and most health insurance plans have similar rules. Be aware that all private health insurance plans vary, and the specific rules of an individual’s plan may differ from these.
A word about fitting... Ideally you will have an opportunity prior to surgery to meet with a certified fitter. Ask to see the available selection of post-surgery products, and take the time to review with the fitter the different options for breast forms, partial breast forms and bras.
important to increase your wearing time gradually.
After being released from your physician’s care, (approximately four to six weeks after surgery), it’s an appropriate time to make an appointment with a certified fitter. She will measure for correct bra size and evaluate your needs.
Ask our certified fitter about the different options available to fit your unique situation. We are here to help and feel honored to serve you and your family.
Realize your surgical site will continue to change as part of the healing process. Those changes can continue for up to six months, and can include swelling, skin changes and settling of the tissue.
There are several bra styles to try. Seamless molded cups and M-frame designs are just two of the features that make post-surgical bras unique and optimal for women recovering from breast surgery. Often a good supportive bra is all that’s needed to restore symmetry after surgery. However, there are a variety of breast forms and partial breast forms that can help restore symmetry.
Clear Bra Straps Breast Form Cover
Self Adhesive Nipples
These can be worn in special pocketed bras or against the skin under a fashion bra. Shapers can also be used after reconstructive surgery to help fill in any deficits in the bra cup. There are accessories like skin-friendly adhesive nipples, bra strap cushions and extenders, breast form covers and more. Once you are fitted with your breast form(s) and bra, wear time of the prosthesis will vary. Sensitivity of the chest wall is not uncommon. Weighted prostheses can result in fatigue in the neck and shoulders. It’s
16
Shades of Pink
Skin Care
Medicare Reimbursement and Coverage for Post-Mastectomy Products
Private Insurance: If you are covered by private insurance;
If you are covered by Medicare, you are allowed: • One silicone breast form every two years (Two forms for bilateral surgery) OR • One Perma-Form Bra every six months OR • One foam breast form every six months (two for bilateral surgery) AND • Number of bras are based what is medically necessary.
Most major medical insurance policies cover mastectomy products according to their guidelines. Deductibles and co-insurances may apply.
If Medicare is your primary insurance: In order to qualify for partial Medicare reimbursement, a licensed physician or other licensed health care professional, qualified and eligible to order breast prostheses and other related post-mastectomy products must prescribe the items you are ordering.
Extenders
Supplemental Insurance: If you have supplemental insurance, you may be entitled to additional reimbursement.
Strap Cushions
Medicaid: Medicaid is run by individual states, so the rules can change from state to state. Thorough research into what is offered by your state, including coverage of reconstructive surgery, is important. Ask us, we are here to help.
We encourage you to call your insurance company to verify your benefits. Give them the procedure codes listed below, and they will be able to give you information regarding what your policy allows, how much they pay, how many bras and breast forms you are eligible for each year. Silicone Breast Form - L8030 Foam Breast Form - L8020 Mastectomy Bras - L8000 Perma-Form/unilateral - L8001 Perma-Form/bilateral - L8002 External Breast Prosthesis Garment- L8015 Note: A “Reimbursement Fee Schedule for Bras and Prosthetics” is published by Medicare for the purpose of determining the amount allowable for these items. This amount varies from state to state and can be lower than our catalog prices. Note: We cannot guarantee Medicare reimbursement, which is based on Medicare’s assessment of a client’s needs. Please note that many private insurance companies will reimburse for hairpieces if your doctor writes a prescription specifying a “necessary cranial prosthesis.”
Shades of Pink
17
There are a variety of headwear options available to help restore confidence and comfort during treatment. • Full and Partial Wigs • Hats and Caps • Scarves • Wraps • Detachable Hair Pieces • And More... Note: Please note that many private insurance companies will reimburse for hairpieces if your doctor writes a
Doctor
Name
Phone
Doctor
Name
Phone
Nurse Navigator
Name
Phone
Women’s Boutique
Name
Phone
Physical Therapist
Name
Phone
Certified Fitter
Name
Phone
Emergency Contact
Name
Phone
Hospital
Name
Phone
Pharmacy
Name
Phone
prescription specifying a “necessary cranial prosthesis.”
Insurance information Company
Company
Policy type
Policy type
Policy number
Policy number
Phone
Phone
Medication information Options in swimwear
18
Shades of Pink
Medication
Date Prescribed
Dosage
Frequency
Comments
Shades of Pink
19
Record Keeping
Options in headwear
Contact information Michelle 37 years young Invasive Ductal Carcinoma Bilateral Mastectomy Reconstructive Surgery
Headwear/Swimwear
Headwear/Swimwear
“I am learning how to slow down and appreciate quieter moments. I definitely have become a bit more introverted through all of this. It’s hard to be social when I don’t feel well enough to go out or have no energy because of radiation or chemo treatments. “My family has been amazing through all of it. 15 days after my first chemo treatment my grandma was in the ICU. She passed shortly after that. My grandpa thrived on caring for her. In our grief, we ended up being wonderful support for each other. He started taking me to my treatments, and that gave me very treasured time with him, and he seemed happy to be caring support for me.”
"No one knows your body better than you do" “No one knows your body better than you do," she says. "I just want to relay that message. I tell my boys this over and over now. Be aware and when something is different, have it checked out."
Pink
A guide to navigating options after breast surgery; Assistive products, resources, and information
• Finding Solutions • Questions to Ask • Checklists • Her Stories • Post-Surgery Wear • Lymphedema • Bras and Breast Forms • Fitting Experience • Medicare & Insurance • Headwear/Swimwear • Record Keeping
Michelle 37 years young Invasive Ductal Carcinoma Bilateral Mastectomy Reconstructive Surgery
while I was showering,” Michelle relates. “I called my mom...I had felt lumpiness before, but this was different.” This was the very humble beginning to Michelle’s very courageous and intense journey with an invasive and aggressive breast cancer.
Michelle
Her Story
"I felt a lump in my left breast, under my armpit,