Opportunity - Share your experience!!

Here is your opportunity to share your experience with other women diagnosed with breast cancer, by passing on your advice for a support database.

The Breast Cancer Support Group at the Breast Cancer Coalition of Rochester is creating resource materials for women newly diagnosed with breast cancer. The support group is asking women who have or have had breast cancer to share their experiences. Specifically, the BCSG would like to know:

What do you know now that you wish you had known before your surgery or other treatment?

What advice would you give to newly diagnosed women?

What should a woman newly diagnosed with breast cancer be sure to do? What should she ask of her medical team?

What was the year of your diagnosis?

Respondents do not need to provide their name. Responses can be sent to: BCSG, Breast Cancer Coalition of Rochester, 840 University Ave., Rochester, NY 14607, or e-mail to info@bccr.org and type "BCSG" in the subject line.

What I wish I knew before my diagnosis, three needle aspirations (2005, 2006 and 2007) and one lumpectomy 7/27/2007...........

I wish I had access to support groups in the beginning
I wish my doctor had access and knew of ALL the latest breast Cancer Technology
I wish after 3 years of telling three specialists I had a lump that the mammogram could have detected it sooner
I wish I had been more confident to tell the Doctor know that I KNEW something was wrong!
I wish my doctor had not told my husband at the time that it was "all in my head"

Newly Diagnosed women SHOULD SEEK SUPPORT AT THE BEGINNING.

Do research on Updated technologies Supported by American Cancer Society and FDA

Get Low Cost imaging During Therapy (no radiation) to see if your Treatment is Working!

EDUCATION, EDUCATION and More Education.

You actually have to educate the doctor on YOUR Body!

Get Baseline, noninvasive Low Cost Breast Scan (detects cancer 8 years before mammogram)

I was Fortunate enough after surgery to get a scan for free during a study. I was so interested I went to Duke University School Of Medicine to learn about it. I can post access to FREE SCANS in Local areas for Women who have been diagnosed or being treated

My Diagnoses was 7/2007

Other Options for Women
Thermal Breast Scan
http://www.medithermc...

Research Article On Beating Breast Cancer
http://www.cvdinc.org...

8 year sooner detection - cell doubling of Cancer
http://www.cvdinc.org...

FDA Approved ACCT- Duke University
http://www.thermology...

Here is a compiled list to date: Your ongoing comments are welcome, and will be added to the list. (You can reply here, or respond directly to Member: Renee.)

What I would have like to have known after diagnosis
Write down questions for your doctor and note the answers.
Get a second opinion for every phase of treatment (surgery, chemo, radiation, reconstruction).
Follow up on everything; don?t depend on the medical process.
Push for BRAC1/BRAC2 testing if you have a family history of breast/prostrate cancer.
Ask to have your case taken to the ?tumor board.?
Ask your doctor, ?Is this what you would tell your sister/daughter/wife to do??
Ask yourself, ?If something happened later, would I regret taking this action; would I regret not taking this action.?
Keep a diary of people/doctors, questions, appointments, your health, etc.
Treat yourself well; say ?no? without guilt.
Ask for help; people want to help but don?t know what to do.
Avoid foods containing soy (estrogen).
Ask everyone (including doctors) who they would recommend for surgery, oncology, reconstruction, radiation, etc.; pick the ones that were most frequently mentioned.
Locate a breast cancer support group and ask questions of its members.

What I would have like to have known before surgery
Take a companion to all critical doctor visits to help prepare questions, take notes and recall answers.
Ask about the option of not removing all lymph nodes at the time of the sentinel node biopsy.
Start reconstruction at the same time as the mastectomy.
Pre-cook meals!
Request information about lymphadema, healing, etc.
Stop taking aspirin, vitamin E and other vitamins or meds that thin blood.
Ask for a definitive list of what you can/cannot do after surgery.
Take time to understand the pros/cons, outcomes and risks of trans flap vs. free flap vs. implants reconstruction.
Ask about cosmetic options and outcomes of surgery, especially lumpectomies where reconstruction options are difficult. It?s OK to be vain and they will be no surprises.
Numbness is associated with the mastectomy.
Ask about ?skin-sparing/nipple-sparing mastectomy.? (nipple coring and an MRI are required to ensure no tumors are near the nipple. Some doctors are not proponents of this type of surgery as there is some cancer tissue left behind.)
Discuss having a double mastectomy before the initial surgery; recovery is longer, but reduces the need of a possible second surgery).
Have nipples tattooed rather than created surgically.

What I would have like to have known after surgery
Visit a lymphadema therapist and learn to do a lymphadema message.
Find out where to order less expensive sleeves and gauntlets online.

What I would have like to have known before chemo/radiation
Drink plenty of water before each chemo treatment to plump up veins.
Push for OncoType DX and/or Mammoprint testing to be better informed. This can?t be done once treatment starts.
Get all dental and hair color work done before treatment starts.
Ask which vitamins you can/cannot take during treatment.
Get a medi-port for chemo to save your veins.
Visit oncology/radiation/chemo centers before making a choice.
Visit a nutritionist.
Ask about clinical trials, especially Phase III and IV for your kind of cancer.
Ask about the percent of decrease in recurrence of breast cancer and the percent increase in occurrence of long-term side effects. Sometimes and older or shorter regime is just as good and may minimize any heart risk.
Have an celebration event planned when treatments are completed.

What I would have like to have known during chemo/radiation
Be careful about manicures/pedicures or other activities where you may break the skin.
Stay away from anyone who is sick. Don?t be afraid to set your boundaries and tell people to stay away.

Good Web sites www.cancer.org;
Great books The Breast Book by Dr. Susan Love; There?s No Such Thing as a Bad Day by Vernon Jordan.

Thank you! Thank you! Thank you! Would I be off-base in requesting a breast reduction in the other candidate to even up?

Generally, how long after a partial mastectomy would I be able to drive?