The rare breast tumor database project is in the development stages. Below you will find a proposed structure and input elements for the database. Keep in mind that this is a 'work in progress'. Your suggestions are welcome. Please use the Contact Us link above to let us know what you think.

Proposed Database Structure

Note: All entered data will be kept in a secure database. All measures have been taken to keep this info highly confidential. Identfying input notated with a ** wil not be publicly displayed. Your first name, last name, address info, and birthdate will not be displayed anywhere. Any other item can be declared anonymous by the participant and will not be displayed publicly, in any form. We strongly suggest that you choose the anonymous option on those items that you do not want known by the general public.

If you have had a recurrence or metastatic growth of your original tumor, please fill in this original diagnosis data (if you have not done so previously) and also enter your reccurence/metastatses info using these additional page links:

--> Link to recurrence input page
--> Link to metastatic growth input page

Note: All data input is for patient information only.

GENERAL INFO

Identifying Information
Date entered or date updated - *automatically generated
UserName (for updates) - Choose a name you will remember
UserPassword (for updates) - Choose a password you will remember
Relationship to patient (self, parent, spouse, child, etc)
**First name
**Last name
**Street address
City or town
State or province
Country
**Home phone#
**Email
**Birthdate
Male or female
How would you describe your race? - White, Latino, Asian, Afro-American
**Secondary contact person - Name, email address, phone # of a person you would allow to input your data (in your absence)

Medical History
Have you had genetic/familial (DNA, etc) testing done prior to diagnosis? - list details
Age at 1st menses
Age at last menses (menopause completion)
Any other pre-cancer conditions, cancers, or tumors for this patient - list type, bodysite, treatments used
Family members with cancer - list cancer type for each member
Hormone replacement drugs used - list drug and duration (for how long)
Birth control drugs used - list drug and duration
Fertility drugs used - list drug and duration
Number of total pregnancies
Number of live births - list the your age(s) at the child's birth
Any delivery complications - list details
Age at first live birth
Have you had an abortion - list number and any complications
Age at 1st sexual intercourse
Any long term medication use - list drug and duration
Alcohol abuse history - list duration
Nicotine product history - list product type and duration
'Recreational' drug history - list drug and duration
Thyroid disease, nodules, or cancer - list details
Where you overweight prior to diagnosis
If so, were you overweight prior to menopause
Other illnesses of note - list details

Breast History/Symptoms - Prior to Diagnosis
What was your original breast size (A, B, C, D cup)
Were you ever told that you had dense breast tissue?
Did you breast feed? If yes, how long, how many children?
Any traumatic injury to the breast prior to diagnoosis - list details
Any repeated minor physical injuries to breast - list details
Any previous surgeries involving the breast? - list details
Any nipple previous discharge? - list info, dates, and treatments (if any)
Were you ever diagnosed with a fibroadenoma, fibrocystic breast disease, atypical hyperplasia, ductal ecstasia, hypertrophy, hypoplasia, mastitis, papilloma, sclerosing adenosis, or any other benign breast disease, - list diagnosis, dates, and treatments (if any).
Did you feel your lump before diagnosis?
Was your lump painful?
If so, did any particular situation cause the pain or increase it?
Did you see inflammation of the breast? - list location
Did you see a dimpling in the breast? - list location
Did you see discoloration of the breast? - list color and location

Environmental Factors - Possible Toxin Exposure
Were you repeatedly exposed to chemicals or fibers? - list chemical or fiber and details, dates/duration
Were you exposed to small amounts of chemicals on a regular basis? - list details, dates/duration
Were you exposed to bisphenol-A (used in PVC - polyvinyl chloride manufacturing)? - list details, dates/duration
Were you repeatedly exposed to any volatile organic compound? - list details, dates/duration
Were you exposed to manufacturing or incineration processes that involved chlorine products (also used in polyvinyl chloride (PVC) and recycled paper manufacturing) or dioxin released during incineration of these products? - list details, dates/duration.
Were you repeatedly exposed to ethylene glycol methyl ether (used in many varnishes, paints, dyes and fuel additives)? - list details, dates/duration.
Did you have previous radiation for another condition or previous cancer? - list details, body site, dose, dates/duration

DIAGNOSIS INFO

Diagnosis
Any wrong diagnosis (misdiagnosis prior to actual diagnosis)?
Which breast was effected (or both)?
Age at diagnosis
Procedure used to confirm diagnosis (mammo, BSE, FNA, core biopsy, needle localization, surgical removal)
Were lymph nodes removed or tested? - state which
If so, were they negative or positive?
Was there vascular involvement? - state location and type
Cell type of tumor (phyllodes, adenoid cystic, metaplastic, etc)
Was the tumor a single mass or multiple masses? - list number, if known
Was your tumor - benign, in-situ (low, intermediate, high), borderline, borderline with low malignant potential, borderline with malignant potential, malignant, malignant with stromal overgrowth)
Were the tumor margins (borders) lobulated, spiculate, irregular, or smooth (distinct)?
Was tubule formation present? - list details
Was tumor necrosis present? - list details
Area of breast effected (position of tumor or malignancy)?
Size of tumor (overall or individual sizes in centimeters) - details
Was there chest wall invasion? - list details
Do you have access to your tumor block?
If so, where is your tumor block being stored (facility)?
Do you know what 'medium' it is stored in (formalin-fixed paraffin-embedded or frozen)?

Tumor Pathology Info - Please enter the following, if reported
Stage
Grade
Ploidy
S-Phase %
Stromal overgrowth (proliferative activity)
Stromal atypia (cell change)
Stromal cellularity
Mitotic count
BRCA1
CA125 counts
CEA counts
CA15-3 count
CA27-29 counts
CK counts
Her2neu (cerb2) overexpression?
MUC-1
P53
Cyclin D1
Epidermal growth factor receptor
BCL-2
Ki-67 (if reported)
P-63 (ir reported)C-Kit (CD117) (if reported)
Estrogen receptor (+ or -)
Progesterone receptor (+ or -)
Overexpression of caveolin-1 or -2
RhoC-GTPase overexpression
TAU protein level
Other tumor block/slides testing done & results

YOUR TREATMENTS

General Medical - Treatment Info
Medical Physicians Involved

Surgical Treatment Info
Surgical procedures used to treat your tumor - list type of surgery, dates, surgeons and facilities involved
Were clean margins achieved (no evidence of existing tumor)
Did you have reconstructive or plastic surgery - list type of surgery, dates, surgeons and facilities involved

Radiotherapy Treatment Info
Radiotherapies used to treat your tumor - list type of radiation treatment, dose, dates/duration, physicians and facilities involved

Chemotherapy Treatment Info
Chemotherapies used to treat your tumor - list type of chemotherapy treatment (chemical agent or combination), dose, dates/duration, physicians and facilities involved

Other Treatment Info
Alternative compounds or procedures used to treat your tumor - list type of treatment, dose (if applicable), dates/duration, professionals and facilities involved
Complimentary treated used (and otherwise not listed above) to treat your tumor - list type of treatment, dose (if applicable), dates/duration, professionals and facilities involved
Palliative treatments used (and otherwise not listed above) to improve your quality of life - list type of treatment, dose (if applicable), dates/duration, professionals and facilities involved
'Other' compounds or procedures used (and not otherwise listed) to treat your tumor - list type of treatment, dose (if applicable), dates/duration, professionals and facilities involved

Treatment Side Effects
Surgical side effect - list side effect, which surgicial procedure listed above was involved (date), dates/duration of the side effect, treatments that were used (if any) to counteract the side effect (or other method of resolution), did the side effect become a chronic (lingering) condition, was your quality of your life effected, if so - how
Radiotherapy side effect - list side effect, which radiotherapy treatment listed above was involved (date), dates/duration of the side effect, treatments that were used (if any) to counteract the side effect (or other method of resolution), did the side effect become a chronic (lingering) condition, was your quality of your life effected, if so - how
Chemotherapy side effect - list side effect, which chemotherapy regimen listed above was involved (date), dates/duration of the side effect, treatments that were used (if any) to counteract the side effect (or other method of resolution), did the side effect become a chronic (lingering) condition, was your quality of your life effected, if so - how
Late onset side effects (those that occured after all treatments were completed) - list side effect, if your medical professionals believe that a particular treatment you had caused it, which one?, dates/duration of the side effect, treatments that were used (if any) to counteract the side effect (or other method of resolution), did the side effect become a chronic (lingering) condition, was your quality of your life effected, if so - how
Long term side effects (those listed in the side effect categories above that have become chronic or lingering) - list side effect, if your medical professionals believe that a particular treatment you had caused it, which one?, dates/duration of the side effect, treatments that were used (if any) to treat the side effect, is the side effect still unresolved, was your quality of your life effected, if so - how

Follow Ups
Have you been followed up after your initial tumor treatment?
If so, at what intervals and for what duration (or currently ongoing)?
Which doctor is primarily responsible for administering your follow up.
What diagnostic procedures or tests have been used in your follow up (ie, xray, scans, blood tests, biopsies).
Has your followup care led to a secondary diagnosis?

Deceased Info
Has the patient died?
If so, what was the cause of death?
Other info you would like to enter about this death

EMOTIONAL SIDE

Support
Did you seek emotional support during or after your treatments?
If so, what types of support did you receive (family, friends, face to face support group, online support group)?
What types of support do you believe you needed?
Do you believe that your support network fulfilled these needs?
Did you go on to use your personal exeriences to help others?
If so, in what capacity?
Are you still involved in a support network? As a recipient of support, a support worker or volunteer, or both?

Overall Quality of Life
What part of your disease experience (diagnosis, treatment, emotional) had the greatest negative effect on your journey? Explain
What part of your disease experience (diagnosis, treatment, emotional) had the greatest positive effect on your journey? Explain
Would you rate your overal quality of life as bad, fair, good, better than average, excellent?
Did your disease journey have a negative or positive effect on your overall quality of life? Explain
Do you consider yourself a survivor? Explain
Do you consider yourself a victim of your disease? Explain
Do you feel threatened or concerned by a possible return of your disease?
If so, is this negatively effecting your life?

OTHER

Info Not Previously Input
If there is any information that you believe is important to your rare breast tumor, that we have not asked previously, please enter it here:
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