New DCIS dx with questions about genetic counselor

melrose7

This is my first post and feeling slightly overwhelmed. I went for my first mammogram 2 weeks ago, called back for more pictures the next day. Results were that they wanted to do a biopsy. That happened last Wednesday with a diagnosis of DCIS apparently intermediate/high grade. That's all I know about my diagnosis. I went today for an MRI and tomorrow I have a meeting with a genetic counselor. I have no family history, just turned 40 last fall. What kind of questions are they going to ask me at the meeting? Besides family history what else they need to know? Thanks for any advice.

readytorock

They'll ask you your family history, but your bloodwork will tell them what they need to know.

BarredOwl

They will request a personal medical history and family history to the extent known.

Relevant personal medical history may include, for example, ethnicity (e.g., Ashkenazi Jewish heritage); information re your history of hormone or oral contraceptive use; age of first period (if known); reproductive history; menopausal status; history of oophorectomy, bilateral salpingo-oophorectomy or hysterectomy; history of breast biopsy and related pathology findings; all cancer diagnoses (breast or other type) with relevant details (e.g., triple-negative; bilateral); any pre-cancer(s) (e.g., colon polyps); history of radiation therapy; or known carcinogen exposure (e.g., DES).

Relevant details of family history include a complete list of unaffected and affected family members related by blood, with for example, information about current age or age at death and cause (if known); any known hereditary syndrome; results of genetic testing (if any); and any cancer diagnosis (e.g., breast, ovarian, Fallopian tube, peritoneal, or other types of cancers). For each cancer diagnosis, include (if possible) details of type of cancer, age at diagnosis, presence of multiple primaries (e.g., bilateral breast cancer). If a female family member is known to have received oophorectomy, bilateral salpingo-oophorectomy, or hysterectomy, include this information and age at surgery, if possible.

If you have no information about some family members, make that clear to the genetic counselor. If people provide you with health information about another family member, ask what information is known versus what may be uncertain (e.g., rather than guessing, just note that a relative had a "gynecologic cancer" of unknown type). If some information is uncertain, be sure to indicate the uncertainty to your genetic counselor.

Use reasonable and practicable efforts to gather initial information about first and second degree relatives, and when possible, third-degree relatives. Write everything down.

First-degree relatives: parents, siblings, and children;

Second-degree relatives: grandparents, aunts, uncles, nieces, nephews, grandchildren, and half-siblings;

Third-degree relatives: great-grandparents, great-aunts, great-uncles, great-grandchildren, and first cousins.

If more information becomes available later or new family history arises, you can inform your genetic counselor about it. Sometimes, information is not available, especially from long ago or more distant relatives. The genetic counselor will work with what you are able to provide.

NCI PDQ states:

"The accuracy and completeness of family histories must be taken into account when they are used to assess risk. A reported family history may be erroneous, or a person may be unaware of relatives affected with cancer. In addition, small family sizes and premature deaths may limit the information obtained from a family history. Breast or ovarian cancer on the paternal side of the family usually involves more distant relatives than does breast or ovarian cancer on the maternal side, so information may be more difficult to obtain. . . Additional limitations of relying on family histories include adoption; families with a small number of women; limited access to family history information; and incidental removal of the uterus, ovaries, and/or fallopian tubes for noncancer indications. Family histories will evolve, therefore it is important to update family histories from both parents over time. (Refer to the Accuracy of the family history section in the PDQ summary on Cancer Genetics Risk Assessment and Counseling for more information.)"

BarredOwl

LisaAlissa

Hi Melrose!

And in fact, my genetic counselor asked all of those questions, built a family tree (based on the information I provided) and then also wanted to know who was alive and for those who were dead, what they died of. Cancer used to be viewed as "shameful" or something, so they used terms for cause of death that we wouldn't necessarily understand as cancer (although those who were reading obits would usually understand at the time. Part of a genetic counselor's training is to uderstand the euphemisms used in the past.

Even if you don't have family members with cancer, a lack of family members (for instance, no women in your father's family for several generations back) might mean hidden genes that might usefully be screened for.

After you meet with the genetic counselor and know what they want to know, you will want to start talking with family members to try to tease out health status or causes of death for various relatives. I found that if I told them my doctor had asked me to collect family information they were generally pretty cooperative. You don't need to tell them that you're considering genetic testing.

Best wishes,

LisaAlissa

melrose7

Thanks for the information. I had my appointment on Wednesday and she built a family tree and wanted to know who was in my family and of those that died what they died of. Not really my personal information. I decided not to get the test done and she agreed since because of the 100 some people on my family tree there was no breast cancer. Now I get to meet with the oncologist and surgeon on monday. Finally get all my questions answered and I'm assuming schedule surgery. Then it might seem real.