Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources
- 05/09/14
general_content
In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a 2005 survey of 618 women living with stage IV disease. It offers insights and direction on the information, support and practical needs of women living with metastatic breast cancer.
Exhibition
Advanced Breast Cancer First International Consensus Conference, November 2011 (oral)
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- bilateral breast cancer
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- biofeedback
- biologic
- biopsy
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- biotherapy
- bisphosphonate
- bisphosphonate-associated osteonecrosis
- blinded study
- blood-brain barrier
- blood-brain barrier disruption
- blood cell count
- blood chemistry study
- board certified oncology pharmacy specialist
- body image
- body mass index
- bolus dose
- bone density
- bone metastasis
- bone mineral density scan
- bone scan
- bone-seeking radioisotope
- brachytherapy
- brain metastasis
- BRCA1
- BRCA2
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- breast-conserving surgery
- breast density
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- Brief Pain Inventory
- cachexia
- CAF regimen
- calcification
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- carboplatin
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- cardiotoxicity
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- carmustine
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- case report
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- CAT scan
- CBC
- cell
- cell-cycle regulation
- cell proliferation
- central nervous system
- central nervous system metastasis
- central nervous system prophylaxis
- central venous access catheter
- cetuximab
- cevimeline
- chaplain
- charged-particle radiation therapy
- chemoembolization
- chemoimmunotherapy
- chemoprevention
- chemoprevention study
- chemoprotective
- chemoradiation
- chemosensitivity
- chemosensitivity assay
- chemosensitizer
- chemotherapeutic agent
- chemotherapy
- chest wall
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- Chinese meridian theory
- chronic
- chronic pain
- cisplatin
- Claus model
- clergy
- clinical
- clinical breast exam
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- clinical study
- clinical trial
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- clodronate
- CMF regimen
- cognition
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- cohort
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- coinsurance
- combination chemotherapy
- comedo carcinoma
- comfort care
- Coming Out
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- comorbidity
- compassionate use trial
- complementary and alternative medicine
- complementary medicine
- complete metastasectomy
- complete remission
- complete response
- complex decongestive therapy
- compliance
- complication
- compression garment
- computed tomography scan
- concomitant
- concurrent therapy
- condition
- consolidation therapy
- constitutional acupuncture
- continuum of care
- contract research organization
- contraindication
- contralateral
- contrast material
- control group
- controlled clinical trial
- controlled study
- conventional medicine
- conventional therapy
- copayments
- cope
- coping skills
- core biopsy
- core needle biopsy
- corticosteroid
- counseling
- COX inhibitor
- cryoablation
- cryopreservation
- cryosurgery
- CT scan
- cultural competency
- cumulative dose
- cumulative exposure
- cure
- cutaneous
- cutaneous breast cancer
- cyclophosphamide
- cyclosporine
- CYP2D6 inhibitor
- cystosarcoma phyllodes
- cytopenia
- cytotoxic
- cytotoxic chemotherapy
- Cytoxan
- Data and Safety Monitoring Board
- DCIS
- de novo
- debulking
- deductible
- definitive surgery
- definitive treatment
- dehydration
- denosumab
- depression
- diagnosis
- diagnostic mammogram
- diagnostic procedure
- diagnostic technique
- diagnostic trial
- diameter
- diarrhea
- diaziquone
- DIEP flap
- dietary counseling
- dietary supplement
- dietitian
- differentiation
- diffuse
- digital mammography
- diphenhydramine
- discharge
- disease progression
- disease-specific survival rate
- distant cancer
- distant metastasis
- Distant recurrence
- distress
- DNR order
- docetaxel
- dolasetron
- dose
- dose-dense chemotherapy
- dose-dependent
- dose-limiting
- dose-rate
- double-blinded
- doxorubicin
- drain
- dronabinol
- droperidol
- drug interaction
- drug resistance
- drug therapy
- drug tolerance
- duct
- ductal carcinoma
- ductal carcinoma in situ
- ductal lavage
- duloxetine
- durable power of attorney
- dysfunction
- dysgeusia
- dyspepsia
- dyspnea
- early menopause
- early-stage breast cancer
- edema
- EEG biofeedback
- efficacy
- Eklund displacement views
- electroacupuncture
- electron beam
- eligibility criteria
- Ellence
- emesis
- emetic
- endocrine
- endocrine therapy
- endpoint
- energy healing
- enteral nutrition
- epidemiology
- epirubicin
- ER+
- ER-
- ER
- ER-PR-HER2/neu-
- eribulin mesylate
- erythema
- estradiol
- estrogen
- estrogen blocker
- estrogen receptor
- estrogen receptor-negative
- estrogen receptor-positive
- estrogen receptor test
- estrogen replacement therapy
- etanidazole
- etidronate
- everolimus
- Evista
- excision
- excisional biopsy
- exemestane
- expanded access trial
- experimental
- extranodal
- false-negative test result
- false-positive test result
- familial cancer
- family medical history
- Faslodex
- fast-neutron beam radiation
- fatigue
- FDA
- febrile neutropenia
- FEC regimen
- Femara
- fertility
- fexofenadine
- fibroadenoma
- fibrocystic breast changes
- fiducial marker
- film mammography
- fine-needle aspiration biopsy
- first-degree relative
- first-line therapy
- five-year survival rate
- fluorouracil
- fluoxetine
- FNA biopsy
- focal
- Food and Drug Administration
- Fosamax
- fractionation
- fulvestrant
- functional magnetic resonance imaging
- gadolinium
- Gail model
- gallium scan
- gamma irradiation
- Gamma Knife therapy
- gamma ray
- Gelclair
- gemcitabine
- gene
- gene expression profile
- gene therapy
- general anesthesia
- generalized anxiety disorder
- generic
- genetic
- genetic counseling
- genetic marker
- genetic marker of susceptibility
- genetic predisposition
- genetic profile
- genetic susceptibility
- genetic testing
- genetic testing
- genetics
- genome
- genome-wide association study
- genomic profile
- genomic test
- genomics
- gland
- Good Clinical Practice
- goserelin
- grade
- grading
- granisetron
- gross description
- Halaven
- hazard ratio
- healing touch
- Health Insurance Portability and Accountability Act
- healthcare provider
- healthcare proxy
- healthy control
- helical computed tomography
- HER2/neu
- Herceptin
- hereditary
- hereditary mutation
- heteronormative
- high-dose chemotherapy
- high-dose radiation
- high-energy proton therapy
- high grade
- high-risk cancer
- HIPPA
- histologic examination
- histology
- historic cohort study
- historical control subject
- homeopathic medicine
- hormonal therapy
- hormone
- hormone receptor
- hormone receptor test
- hormone replacement therapy
- hormone responsive
- hormone therapy
- hospice
- hot flash
- human epidermal growth factor receptor 2
- human participant protection regulations
- hydroxydaunorubicin
- hyperalimentation
- hypercalcemia
- hyperfractionated radiation therapy
- hyperfractionation
- hyperplasia
- hypersensitivity
- hypofractionated radiation therapy
- hypofractionation
- hypoxia
- ibandronate
- ibuprofen
- idiopathic
- image-guided radiation therapy
- imaging
- imaging procedure
- immune adjuvant
- immune function
- immune response
- immune system
- immune system tolerance
- immunization
- immunoassay
- immunocompromised
- immunodeficiency
- immunohistochemistry
- immunology
- immunomodulation
- immunosuppression
- immunotherapy
- implant
- implant displacement views
- implant radiation therapy
- implantable pump
- in network
- in situ
- incidence
- incision
- incisional biopsy
- indication
- indolent
- induction therapy
- infection
- infertile
- infertility
- infiltrating breast cancer
- infiltrating ductal carcinoma
- inflammation
- inflammatory breast cancer
- informed consent
- infusion
- ingestion
- inherited
- iniparib
- injection
- inoperable
- insomnia
- Institutional Review Board
- intensification therapy
- intensity-modulated radiation therapy
- interfering thought
- internal mammary lymph nodes
- internal radiation therapy
- International Unit
- internist
- interstitial radiation therapy
- intervention
- intervention group
- intra-arterial
- intracarotid infusion
- intradermal
- intraductal breast papilloma
- intraductal carcinoma
- intrahepatic
- intrahepatic infusion
- intramuscular
- intramuscular injection
- intraoperative radiation therapy
- intraoperative ultrasound
- intratumoral
- intravasation
- intravenous
- intravenous infusion
- intravenous injection
- intrusive thought
- intrusive thoughts
- invasive breast cancer
- invasive cancer
- invasive procedure
- investigational
- investigator
- ionizing radiation
- ipsilateral
- IRB
- irradiated
- irradiation
- irreversible toxicity
- ixabepilone
- joint pain
- Karnofsky Performance Status
- laboratory test
- lapatinib
- laser
- laser surgery
- laser therapy
- lassitude
- late effects
- late-stage cancer
- latent
- laxative
- LEEP
- legal aid organization
- lesion
- lethargy
- letrozole
- leukopenia
- levels of evidence
- Lexapro
- libido
- lidocaine
- ligation
- linac
- linear accelerator
- lipoma
- lisofylline
- liver metastasis
- liver scan
- living will
- lobaplatin
- lobe
- lobectomy
- lobular carcinoma
- lobular carcinoma in situ
- lobule
- local anesthesia
- local cancer
- local therapy
- localization
- localized
- locally advanced cancer
- locally recurrent cancer
- lomustine
- loop electrosurgical excision procedure
- loop excision
- lorazepam
- low grade
- lubricant
- lumbar puncture
- lumpectomy
- lung metastasis
- luteinizing hormone-releasing hormone agonist
- lymph
- lymph gland
- lymph node
- lymph node dissection
- lymph node drainage
- lymph node mapping
- lymph vessel
- lymphadenectomy
- lymphadenopathy
- lymphangiogram
- lymphangiography
- lymphatic basin
- lymphatic fluid
- lymphatic mapping
- lymphatic system
- lymphatic vessel
- lymphedema
- lymphography
- lymphoscintigraphy
- Lyrica
- lytic lesion
- macrocalcification
- magnetic resonance imaging
- magnetic resonance perfusion imaging
- magnetic resonance spectroscopic imaging
- mainstream medicine
- maintenance therapy
- male breast cancer
- malignancy
- malignant
- malignant pleural effusion
- malnutrition
- mammary
- mammary dysplasia
- mammary gland
- mammogram
- mammography
- MammoSite
- Mammotome
- mantle field
- MAO inhibitor
- margin
- marker
- mass
- massage therapy
- mastectomy
- mastitis
- maternal
- maximum tolerated dose
- mean survival time
- measurable disease
- medial supraclavicular lymph node
- median
- median survival time
- Medicaid
- medical castration
- medical device
- medical nutrition therapy
- medical oncologist
- Medicare
- medicine
- medullary breast carcinoma
- mega-voltage linear accelerator
- megestrol
- melphalan
- meningeal metastasis
- menopause
- menorrhagia
- menstrual cycle
- menstrual period
- menstruation
- mental health
- mental health counselor
- meridian
- mesna
- meta-analysis
- metallic
- metastasectomy
- metastasis
- metastasize
- metastatic
- methotrexate
- metoclopramide
- metronomic therapy
- microcalcification
- micrometastasis
- microscopic
- milk duct
- mind/body exercise
- mindfulness relaxation
- Miraluma test
- mitigate
- modified radical mastectomy
- molecular marker
- molecular medicine
- molecular risk assessment
- molecularly targeted therapy
- monoamine oxidase inhibitor
- monoclonal antibody
- morbidity
- mortality
- MRI
- MRSI
- MTD
- mTOR
- mucositis
- multicenter study
- multicentric breast cancer
- multidisciplinary
- multidisciplinary opinion
- multidrug resistance
- multidrug resistance inhibition
- multifocal breast cancer
- music therapy
- mutation
- mutation carrier
- myalgia
- myelosuppression
- nanoparticle paclitaxel
- narcotic
- National Cancer Institute
- National Center for Complementary and Alternative Medicine
- National Institutes of Health
- natural history study
- naturopathy
- nausea
- NCCAM
- NCI
- NCI clinical trials cooperative group
- needle biopsy
- needle localization
- needle-localized biopsy
- negative axillary lymph node
- negative test result
- neoadjuvant therapy
- neoplasm
- nerve
- nerve block
- neurocognitive
- neurologic
- neuropathy
- neurotoxicity
- neurotoxin
- neutropenia
- NIH
- nipple
- nipple discharge
- nitrosourea
- NMRI
- node-negative
- node-positive
- nodule
- nonblinded
- nonconsecutive case series
- noninvasive
- nonmalignant
- nonmetastatic
- nonprescription
- nonrandomized clinical trial
- nonsteroidal anti-inflammatory drug
- nonsteroidal aromatase inhibitor
- nontoxic
- normal range
- normative
- NP
- NPO
- NSAID
- nuclear grade
- nuclear magnetic resonance imaging
- nuclear medicine scan
- nurse
- nurse practitioner
- nutrition
- nutrition therapy
- nutritional counseling
- nutritional status
- nutritional supplement
- nutritionist
- obese
- objective improvement
- objective response
- observation
- observational study
- obstruction
- off-label
- olaparib
- oncologist
- oncology
- oncology nurse
- oncology pharmacy specialist
- oncolysis
- ondansetron
- onset of action
- oophorectomy
- open biopsy
- open label study
- open resection
- operable
- opiate
- opioid
- opportunistic infection
- oral
- organ
- orthodox medicine
- osteolytic
- osteonecrosis of the jaw
- osteopenia
- osteoporosis
- OTC
- out of network
- outcome
- outpatient
- ovarian
- ovarian ablation
- ovarian cancer
- ovarian suppression
- ovary
- over-the-counter
- overall survival rate
- overdose
- overexpress
- overweight
- ovulation
- PA
- paclitaxel
- paclitaxel albumin-stabilized nanoparticle formulation
- paclitaxel-loaded polymeric micelle
- Paget disease of the nipple
- pain threshold
- palliation
- palliative care
- palliative therapy
- palmar-plantar erythrodysesthesia
- palonosetron hydrochloride
- palpable disease
- palpation
- palpitation
- pamidronate
- panic
- papillary tumor
- Paraplatin
- parenteral nutrition
- paroxetine hydrochloride
- PARP
- PARP inhibitor
- partial-breast irradiation
- partial mastectomy
- partial oophorectomy
- partial remission or partial response
- pastoral counselor
- paternal
- pathologic fracture
- pathological stage
- pathological staging
- pathologist
- pathology report
- patient advocate
- Paxil
- peau d'orange
- pedigree
- peer-review process
- peer-reviewed scientific journal
- perfusion magnetic resonance imaging
- perimenopausal
- periodic neutropenia
- perioperative
- peripheral neuropathy
- peripheral venous catheter
- personal health record
- personal medical history
- personalized medicine
- Pertuzumab
- PET scan
- pharmacist
- phase I/II trial
- phase I trial
- phase II/III trial
- phase II trial
- phase III trial
- phase IV trial
- phlebotomy
- photon beam radiation therapy
- phyllodes tumor
- physical examination
- physical therapist
- physical therapy
- physician
- physician assistant
- physiologic
- PI3 kinase inhibitor
- pilocarpine
- pilot study
- placebo
- placebo-controlled
- plastic surgeon
- plastic surgery
- population study
- positive axillary lymph node
- positive test result
- positron emission tomography scan
- post-traumatic stress disorder
- postmenopausal
- postoperative
- postremission therapy
- potentiation
- power of attorney
- PR
- PR+
- PR-
- practitioner
- preauthorization
- precancerous
- preclinical study
- predictive factor
- pregabalin
- premalignant
- premature menopause
- premenopausal
- premium
- prescription
- prevention
- preventive
- preventive mastectomy
- primary care
- primary care doctor
- primary endpoint
- primary therapy
- primary treatment
- primary tumor
- Principal investigator
- prochlorperazine
- progesterone
- progesterone receptor
- progesterone receptor-negative
- progesterone receptor-positive
- progesterone receptor test
- progestin
- prognosis
- prognostic factor
- progression
- progression-free survival
- progressive disease
- Prolia
- proliferative index
- promegapoietin
- prophylactic
- prophylactic mastectomy
- prophylactic oophorectomy
- prophylactic surgery
- prophylaxis
- prospective
- prospective cohort study
- prosthesis
- protective factor
- protein
- protein-bound paclitaxel
- protein expression
- protein expression profile
- protocol
- proton
- proton magnetic resonance spectroscopic imaging
- pruritus
- psychiatrist
- psychological
- psychologist
- psychosocial
- psychotherapy
- PTSD
- pump
- punch biopsy
- qi
- qigong
- quadrantectomy
- quality assurance
- quality of life
- radiation
- radiation brachytherapy
- radiation dermatitis
- radiation fibrosis
- radiation necrosis
- radiation nurse
- radiation oncologist
- radiation physicist
- radiation surgery
- radiation therapist
- radiation therapy
- radical lymph node dissection
- radical mastectomy
- radioactive
- radioactive drug
- radioactive seed
- radioisotope
- radiologic exam
- radiologist
- radiology
- radionuclide
- radionuclide scanning
- radiopharmaceutical
- radiosensitization
- radiosensitizer
- radiosurgery
- radiotherapy
- raloxifene
- raloxifene hydrochloride
- randomization
- randomized clinical trial
- receptor
- RECIST
- reconstructive surgeon
- reconstructive surgery
- recreational therapy
- recurrence
- recurrent cancer
- referral
- reflexology
- refractory
- refractory cancer
- regimen
- regional
- regional anesthesia
- regional cancer
- regional chemotherapy
- regional lymph node
- regional lymph node dissection
- registered dietician
- regression
- rehabilitation
- rehabilitation specialist
- relapse
- relative survival rate
- relaxation technique
- remission
- remission induction therapy
- remote brachytherapy
- research nurse
- research study
- resectable
- resected
- resection
- residual disease
- resistant cancer
- resorption
- respite care
- response rate
- retrospective cohort study
- retrospective study
- risk factor
- Rubex
- salpingo-oophorectomy
- salvage therapy
- samarium 153
- sargramostim
- scalpel
- scan
- scanner
- scintigraphy
- scintimammography
- sclerosing adenosis
- screening
- screening mammogram
- second-line therapy
- second-look surgery
- second primary cancer
- secondary cancer
- secrete
- sedative
- segmental mastectomy
- selection bias
- selective estrogen receptor modulator
- selective serotonin reuptake inhibitor
- sentinel lymph node
- sentinel lymph node biopsy
- sentinel lymph node mapping
- sepsis
- sequential AC/Taxol-Trastuzumab regimen
- sequential treatment
- SERM
- sertraline
- Serzone
- sestamibi breast imaging
- sexuality
- sibling
- side effect
- silicone
- simple mastectomy
- simulation
- Single-agent therapy
- sleep disorder
- social service
- social support
- social worker
- sodium thiosulfate
- soft tissue
- solid tumor
- somatic
- somatic mutation
- sorafenib
- specialist
- specificity
- spiculated mass
- spinal anesthesia
- spinal block
- spiral CT scan
- spirituality
- sporadic cancer
- SSRI
- stable disease
- stage
- stage 0 breast carcinoma in situ
- stage 0 disease
- stage I breast cancer
- stage IA breast cancer
- stage IB breast cancer
- stage II breast cancer
- stage II breast cancer
- stage IIA breast cancer
- stage IIB breast cancer
- stage III breast cancer
- stage III lymphedema
- stage IIIA breast cancer
- stage IIIB breast cancer
- stage IIIC breast cancer
- stage IV breast cancer
- staging
- stamina
- standard of care
- standard therapy
- statistically significant
- stent
- stereotactic biopsy
- stereotactic radiosurgery
- sterile
- sternum
- steroid
- stress
- strontium
- study agent
- subcutaneous
- subcutaneous port
- subjective improvement
- subset analysis
- supplemental nutrition
- supplementation
- support group
- supportive care
- supraclavicular lymph node
- surgeon
- surgery
- surgical biopsy
- surgical menopause
- surgical oncologist
- survival rate
- symptom
- symptom management
- symptomatic
- synergistic
- synthetic
- syringe
- systemic
- systemic chemotherapy
- systemic disease
- systemic therapy
- TAC regimen
- tai chi
- tailored intervention
- talk therapy
- tamoxifen
- targeted therapy
- taxane
- Taxol
- Taxotere
- Tc 99m sulfur colloid
- technician
- terminal disease
- therapeutic
- therapeutic touch
- therapy
- thermography
- thiethylperazine
- thiotepa
- third-line therapy
- thrush
- time to progression
- tinnitus
- tissue
- tissue flap reconstruction
- TNM staging system
- tomography
- tomotherapy
- topical
- topical chemotherapy
- topoisomerase inhibitor
- total estrogen blockade
- total mastectomy
- total nodal irradiation
- total parenteral nutrition
- toxic
- toxicity
- tracer
- traditional acupuncture
- tranquilizer
- transdermal
- transfusion
- transitional care
- translational research
- trastuzumab
- trauma
- treatment field
- trigger
- trigger point acupuncture
- triple-negative breast cancer
- tumescent mastectomy
- tumor
- tumor antigen vaccine
- tumor board review
- tumor burden
- tumor debulking
- tumor load
- tumor marker
- tumor volume
- Tykerb
- ulcer
- ulceration
- ultrasound-guided biopsy
- ultrasound/ultrasonography
- ultraviolet radiation therapy
- uncontrolled study
- undifferentiated
- unilateral
- unilateral salpingo-oophorectomy
- unresectable
- unresected
- upstaging
- urticaria
- VACB
- vaccine therapy
- vacuum-assisted biopsy or vacuum-assisted core biopsy
- Valium
- vancomycin
- vandetanib
- vascular endothelial growth factor-antisense oligonucleotide
- vascular endothelial growth factor receptor tyrosine kinase inhibitor
- vein
- Velban
- venipuncture
- venous sampling
- Versed
- vertebroplasty
- vinorelbine
- vital
- vomit
- watchful waiting
- wedge resection
- Wellcovorin
- Western medicine
- WGA study
- white blood cell
- whole cell vaccine
- whole genome association study
- wide local excision
- wire localization
- wound
- X-ray therapy
- Xanax
- Xeloda
- xerostomia
- Xgeva
- yoga
- ziconotide
- Zinecard
- Zofran
- zoledronic acid
- Zoloft
- Zometa
Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.