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CURE COMMUNITY
Having the "talk"
BY KATHY LATOUR | JUNE 22, 2010
My daughter Kirtley was only 13 months old when I was diagnosed with breast cancer in 1986 at age 37. By fall 1991 I was healing emotionally, and Kirtley was a happy, healthy 6-year-old who had inherited my stubborn nature and love of books. Even after the first of the BRCA genes was discovered in 1990, I knew my risk was low. I was the first in my family to get cancer. It was stroke or cardiac issues that removed my family tree limbs. Then my mother was diagnosed with stage 4 breast cancer in the fall of 1991; she died six months later. It was a difficult time for me and became even more difficult as I began to worry about whether I now needed to worry about passing on more than a love of books to my daughter. As I celebrated survivorship and Kirtley grew, I constantly scanned information about genetic testing for breast cancer, feeling sure that we would know more before I should worry.
In 1994 the BRCA2 gene was identified, and in 1996 came the first commercial test that could identify the mutated genes. I knew that if I tested positive, Kirtley had a 50 percent chance of carrying the gene. This was a terrifying thought for two reasons: Kirtley might be positive, and she was too young for either of us to do anything about it; Kirtley might be negative and stop worrying about her risk of developing breast cancer.
I applied what we knew about breast cancer prevention, keeping Kirtley active and healthy. She ice skated every day after school, but I'll take odds that I was the only mother at rink side watching her daughter jump and spin while at the same time thinking of a study that showed exercise during adolescence was an important factor in staving off breast cancer.
Then, in 2002 my brother was diagnosed with early stge prostate cancer at age 48. OK, so it was time that I requested the packet of information about genetic counseling from my local cancer center. After reading it, I was still reassured that my risk was small.
Kirtley graduated from high school in 2004 and left for college. But on the way to my next cancer maintenance check up, I ran into the oncologist who specialized in hereditary breast cancers. I asked her opinion about being tested -- not liking her response.
"You were under 40 when your breast cancer was diagnosed," she said. "All women diagnosed under age 40 should be tested."
I decided to wait until Kirtley graduated from college in 2008 to be tested, knowing that she would be well educated on breast cancer and old enough that we could have a meaningful discussion about options.
But I moved the testing date up after receiving a second breast cancer diagnosis in 2007. Since this diagnosis was DCIS and I wasn't facing chemotherapy again, my biggest fear was that it raised my risk of being positive for one of the two gene mutations we have identified, BRCA1 and BRCA2.
I was finally tested in spring 2008, two months before Kirtley graduated from college. I was negative, something I saw as my graduation present for her -- but nothing I talked about with her. My second cancer diagnosis had scared her enough. I could put this discussion off for a while, but the genetic counselor's parting words meant it was still something we needed to talk about.
The counselor said that, while I didn't test positive for the BRAC 1 or 2 gene, there was something going on in my family as it had more than its share of cancer. We needed to be aware.
Kirtley is now an insured member of the work force in New York City and a few months ago she called to ask me if I had been tested for the the breast cancer genes. I said I had and that I was negative and asked her why she was asking. Seems that at her gynecology appointment, her new doctor read through her family history and asked if I had been tested. Kirtley needed to know.
When Kirtley relayed the information, the doctor did the best thing possible.
She told Kirtley that being negative didn't mean she could stop worrying about getting breast cancer. Her risk was still the same as any other American woman, and, as we learned more about genetics, she needed to stay aware since there could be more mutated genes found in the future.
Kirtley took it in stride, and I felt pride that she has taken control of her own health. But, like any mother who has had breast cancer, I'll always worry.
To read more on sharing genetic information with children, read CURE's Summer 2010 article, "The Genes That Bind."
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I'm so proud of you, Kathy. It's been years since we last saw one another. I'm glad to know you are a survivor. My sister Linda was not so lucky. I'd love to hear from you. If my e-mail address does not show up here, Google me and you'll find it on my website titled The Regency Plume Newsletter.
- Posted by Marilyn Clay 7/27/10 6:43 PM
Ever the great writer, ever the dedicated and compassionate social justice advocate and ever the brightest bulb in the bunch, you continue to help others and do me proud for even knowing you. This is a great article. I only hope Kirtley is tested and RELIEVED to find that she is cancer-free. We will both rejoice that she stays that way. I had a cancerous kidney removed since we last visited. Praise God they found it at stage 2 and the prognosis is good.
- Posted by Jennifer Bryan 8/17/10 11:07 AM
Kathy, I understand how you feel. Hooray, for your daughter and her proactive approach. I don't have a daughter, but I have a granddaughter and another one to be born soon, and my sons and daughters-in-law have a complete history of the cancers in our family. They too want to make sure they have all the information for their children, and themselves.
- Posted by Vernal Branch 8/26/10 1:31 PM
I am concerned about this genetic component as well. I was diagnosed with breast cancer at age 48. When the doctors reviewed my history, they decided that I needed to have the genetic testing. My mother had a breast cancer diagnosis in 1980 and then in 1988 had an ovarian cancer diagnosis. She died from the ovarian cancer in 1994. I was terrified having already been diagnosed with breast cancer. Unfortunately for me my BRCA2 test was positive. I am, however, looking at this as positively as possible. I know that there is a 50/50 chance that my daughter will carry this gene, but this fact I feel will force her to take more control of her own health when she gets a little older. She is still very young and will not be faced with any decisions regarding this testing for a few years yet. Her mother will be right there with her sharing input on what she needs to do with regards to her health.
When my breast cancer diagnosis first came, I opted for a lumpectomy and refused to discuss mastectomy and ultimately said positively absolutely "NO". However, with the knowledge that I gained about this gene and with the support of many family members and close friends, I decided to not only have a bilateral mastectomy with immediately reconstruction but I had a total hysterectomy as well. I felt that I needed to reduce my risk of recurrence of the breast cancer and the ovarian cancer as much as possible. I have no regrets and am totally comfortable with my decisions to have these surgeries now. Yes, it was a lot to get through but I feel necessary to make sure that I am here for my husband and my young daughter. I can only say thank you to my close friend and co-worker who said to me with your famiy history you better think about what you are doing. I also failed to mention earlier that my father had prostrate cancer. No regrets here.
- Posted by kathleen petrozelli 8/26/10 3:04 PM
I was first diagnosed in 1993 at age 42. My home is in New Mexico, but I decided to go to a breast specialist, Dr Sally Knox, at Baylor Hospital for my mastectomy. Kathy, you came and visited with me in the hospital room just before the surgery. I have had two reoccurences and am on Faslodex shots to control. My paternal aunt died of breast cancer and my Dad had a mastectomy with pre cancerous cells. My daughter's paternal grandmother died of breast cancer in 2001. So, she has breast cancer on both sides. We are talking about getting tested for BRCA. My daughter is now 24, received her Master's degree last December and we are planning her wedding for June of this next year.
- Posted by Linnie Davis 8/26/10 3:51 PM
Kathy, I appreciate your willingness to be open and to write your story. Yet I hope readers understand exactly why your story is frightening, as you chose time and again to not know and not tell genetic information that could have been essential to your family's health. For many, this choice is ends up being life-threatening, both for themselves or for family members. It sounds like you had a choice so many others never had back in the mid-90's: to learn your genetic risk for cancer. BRCA mutations lead to increased risk for breast, ovarian, prostate, and pancreatic cancers, as well as melanoma. Women and men who know their genetic risk have choices for early detection and even prevention, but most of them don't yet know there is something they could check. You knew there was something to know -- long before others were aware -- and you actively decided you didn't want to know.
I understand that the culture was different then. You had a lot of company in people thinking genetic knowledge might be too upsetting for humans to face. (Not actually understanding how large the risk of not knowing could be; not understanding how much more upsetting it is to face cancer that could have been prevented, or how upsetting it would be for a loved one to find advanced cancer that could have been prevented-- if only they had known in time).
I hope readers are empathetic with why you made the choices you made at the time, when genetic knowledge was still so new. Yet I also hope readers recognize that we are in a very different time today. Today, having the courage to know and the courage to tell will be life-saving for many.
- Posted by Lisa Friedman, Ph.D. 9/2/10 11:38 AM