There are many factors that influence women with how aggressive they want to be, whether the decision relates to actual breast cancer treatment or prevention of the disease. Some will want to do everything possible to reduce the risk of getting breast cancer; others may want to take a less aggressive approach. Some desire genetic testing as an additional tool to aid them in their decision making; others says they’d “rather not know.”

Having tools that can assist the clinician in helping his/her patient make informed decisions are very much needed. Understanding the rationale behind a specific choice that a patient selected is useful in helping her in treatment planning as well as ensuring that they is basing her decisions and choices are accurate medical facts and not on here say information.

Case scenario: a 35 year old woman learns that she has invasive ductal breast carcinoma in her left breast. It is small, 0.7 cc., grade 2/3, ER/PR negative and Her2neu neg. Her mother was diagnosed with breast cancer at age 44 and died at age 46. The patient was a teen at the time and found the experience very emotionally traumatic. She has worried over the last 10-15 years whether she would get breast cancer and how her worst fears have been realized. Her breast MRI done bilaterally does not show any significant findings in the contralateral breast and was performed because her mammogram images showed very dense breast tissue—a sign of youth and high estrogen levels.

The patient was been referred to a breast surgeon for discussion about her breast cancer treatment. She will be seen in 3 days. Her husband will be accompanying her. Questions that are racing her mind right now are:

how advanced is this breast cancer? Is it in my lymph nodes already? Is it elsewhere in my body? My mother was dead just 2 years after she was diagnosed. I noticed my lump 4 months ago and finally now went to the doctor about it.

I wonder if I have a breast cancer gene? I’ve heard that if your mother was diagnosed young and you are also diagnosed young maybe it is because you carry a gene.

If I carry a gene then am I destined to die from the disease as my mother did?

I think I should get both breasts taken off. My mother only had a lumpectomy. Maybe that was her mistake.

will my husband still love me and consider me sexually attractive if I have mastectomies ?

what type of reconstruction could I have?

I don’t want to miss time from work since I have limited sick leave. How much time do I miss if I have a big surgery vs a less complicated surgery with shorter recovery time?

I don’t want chemo. Can I do more surgery instead or radiation instead?

if I get genetically tested will my insurance cover it? ($3400). If the don’t I can’t afford to do it. If they do cover it and I test positive I may not want the insurance company knowing that I have a genetic problem. They might label me with a pre-existing condition.

can I still have children? We were planning on a family and were just planning to get underway with these plans. Will my ovaries still work? Will they have to remove my ovaries if I’m genetically positive? Is it possible to quickly have a baby now and then do the treatments needed later?

how much time do I have to make all these decisions?

I have 2 sisters and 1 brother. Do they need to be tested too?

how much risk it this to the next generation if I test positive for a breast cancer gene? Will I feel guilty if I am passing this onto my baby?

if I test positive and my sisters test negative how will I feel? How will they feel?

if I test negative for a breast cancer gene is that a guarantee that my family doesn’t have some gene associated with breast cancer that lacks a blood test to determine yet?

These are questions that race through the minds of a woman facing such a situation. Having additional tools for understanding patient preferences can assist doctors and genetics specialists when talking with and managing their patient’s care.