I AM MORE THAN MY BREASTS
Inside the house everything was quiet. It had been since Albert died. It was September 2007. The daily noises from outside were a quiet hum as cars drove by, children laughed, birds sang, but inside it remained quiet. As if nothing moved. The ring of the phone pierced the heavy silence. The sound was abrasive and it was almost angry. It’s heart-wrenching cry resonated through the entire house. It echoed off the walls and filled every space. It was an intrusion. When the person on the line asked to speak to Albert, Caroline’s mother Della was confused. She listened. Her face dropped, and her eyes sank even further. As she put the phone down, Della was in shock. Still grieving her husband’s death, she had not expected the call she had just received. All she could think about were her two daughters, were they at risk? On the other end of the phone had been a genetic counsellor, calling to give Albert his test results. Test results for a test nobody knew he had taken. Albert was BRCA positive.
BRCA stands for breast cancer susceptibility gene. BRCA one and two are a class of genes known as tumour suppressors and it is the mutation of these genes that can result in hereditary breast and ovarian cancer. According to James McKay, a geneticist at the London Breast Clinic, women with the gene mutation BRCA can have a chance of up to 90 percent of developing breast cancer and up to 60 percent of developing ovarian cancer. A woman can carry the gene mutation if there are cases of breast and ovarian cancer in her family. The gene can be passed on by men or women. There is also a higher risk of carrying the gene for Ashkenazi Jews.
The mysterious phone call from the genetic counsellor was to change Caroline Presho’s life forever. At only 33 she and her sister decided to get tested for the BRCA gene. They were tested together in October 2007, and given their results together in December. “We either wanted to both be positive, or both be negative,” said Caroline. Neither wanted the other to go through it alone. They ultimately got their wish and both tested positive.
“There was no agonizing about my decision,” said Caroline, who is an Ashkenazi Jew. As soon as she received her positive result she wanted to have her breasts removed. Her husband was completely supportive and said he just wanted her here. Without time to waste feeling sorry for herself, Caroline put her positive energy into motion. “I could either get rid of them by choice or by cancer” she said. Feeling unprepared by her doctor and psychologists who she felt had their own agendas for surgical options and asked ridiculous questions, Caroline embarked on her own research, and prepared herself for what was to come. While for the most part Caroline was happy to say goodbye to her breasts, she chuckles as she remembers: “At one point I was obsessed with nipples!” In November 2009, Caroline went in for her surgery. Her recovery period was around three weeks, and surrounded by support, by the third week she was walking her kids to school again. “I feel more confident with the new ones!” says Caroline. While she had always been fairly shy of her naked chest, Caroline now feels confident to show them off and says: “I’m proud of them.”
Caroline has become involved with UK support group BRCA Umbrella, where she says she has found an amazing amount of support and understanding. It is an online support group that connects people who need each other. Caroline says: “People say the right thing, but don’t really understand the fear.” BRCA Umbrella allows people to share their experience and understanding as they are going through the same thing. She has made fantastic friends, and laughs as she says that they call each other mutants.
Following a positive BRCA result, there are many possible courses of action. Some women choose surveillance, which can include yearly mammograms and ovary screening. There are also drugs on the market, though they are still being tested. The most drastic option is preventative surgery. A woman may choose to have a double mastectomy, like Caroline did, and a hysterectomy. A double mastectomy can include either the removal of the breasts entirely or removal of the breast tissue, followed by a breast reconstruction. These days reconstructive breast surgeries are largely successful. With new technologies breasts can be made to feel as close to natural as possible. A hysterectomy involves the removal of the ovaries, and has to be followed by hormone replacement. According to McKay, a women’s choice is based largely on what they have seen. In that, if a woman has witnessed a bad cancer experience, they may be more likely to choose a drastic option.
Such dramatic surgery brings many issues to the surface. A woman’s breasts and ovaries are her source of womanhood. They are the force of fertility, and this can be a difficult thing to give up. In addition, removal of the ovaries means immediate menopause. This can be difficult for a woman to come to terms with, as it can feel like the end of youth forever.
Lisa Cohen, like Caroline, is an Ashkenazi Jew, and got tested for the BRCA mutation four years ago at 38. Like Caroline, she also had three young children. Coming from a spiritual background and believing in alternative medicine, having the genetic test was opposed to her beliefs. She had always believed that genetics was a “load of rubbish”. However her mother’s death from breast cancer, and the diagnosis of her sister with the same disease changed her views. As a single mother, she decided she had to do anything to prevent getting cancer. Thus chose to have the genetic test for the BRCA mutation.
Within two months of receiving her positive results from the BRCA test, Lisa had had her ovaries removed and the tissue from her breasts. “I needed to be here for my kids” she said. One month later her sister died from breast cancer and she was struck with painful guilt that her sister couldn’t save herself, but she could. The emotional tax of the operation was high. It was rushed, which meant Lisa wasn’t adequately prepared emotionally, and did not have all information available to her. Lisa was confused and unsure and says: “I didn’t think I deserved help because I wasn’t sick.” Lisa was worried about early menopause and saying goodbye to her breasts was difficult, as they represented a part of her womanhood. She still wanted to date and was scared of being a monster. She has suffered since her surgery, unhappy with the reconstruction, she has undergone four additional reconstructions. Despite this, her years as a survivor help her to know “who I am is far more than my breasts”. She also said: “I would rather have my body like this than have cancer”
Living in Israel, with many Ashkenazi Jewish women, Lisa felt there was inadequate support for women with the BRCA mutation. This led her to set up Bracha, a support network where she meets carriers, organises medical conferences, social meetings and an interactive website. Lisa meets with each woman personally and shares her experience, and has become like a mother for them and receives many thanks. Though she has two other jobs as an environmentalist and an English teacher, Bracha has become like a fulltime job. Bracha is the Hebrew word for blessing, which is how Lisa has come to view her gene mutation. “The fact we have information to save our lives is a blessing” she says. She has never looked back on her decisions regarding the gene, and is pained in her belief that “If my sister had this treatment she would still be here today”
Sharon Jack has had an entirely different experience with BRCA. She received her positive result after already battling ovarian cancer with which she was diagnosed in March 2009. She had surgery to remove her ovaries one month later and then she began chemotherapy. Her first question after her diagnosis was if her cancer could be hereditary. She needed to know who else was at risk. After delving into her family history she found many cases of ovarian and breast cancer, and then came upon her aunt’s BRCA result. She had died in 2000, and had left tissue and blood for research. This enabled Sharon to have her DNA tested against it. So ultimately her aunt was able to help her family from beyond the grave. With this information, Sharon knew there was a chance she could test positive.
Sharon needed to get tested. Sharon works in research so her personality lends itself to needing all available information. “I just wanted to know” she says. It was hard for Sharon at the time of her diagnosis of ovarian cancer, she says: “The hard thing when you get cancer is wondering why.” She had always done all the right things. She ate healthily and exercised regularly. BRCA gave her a reason. It also gave her a choice. Still on chemotherapy treatment for her ovarian cancer, Sharon wished she had known about BRCA before, so she could have taken action. Now she had the chance to prevent hereditary breast cancer too. “I would rather have information and be able to do something about it and not sit and wait for cancer to come” she said. It was for this reason she had a double mastectomy in January this year.
While she doesn’t regret any decisions she has made, her BRCA result did “open a can of worms” for her family. Unlike Caroline and Lisa, Sharon has three grown children, a 16 year old daughter, a 21 year old son, and a 25 year old daughter about to get married. Her youngest daughter was too young to get tested, but the older two went immediately. Her son tested negative, her daughter positive. “I was more upset than with my diagnosis” says Sharon. It was devastating to deal with her daughter’s need to make such complicated decisions, and felt responsible. But Sharon says of her daughter with pride: “She deals with things very well.” While having a mastectomy before having children doesn’t scare her, she is now looking into pre genetic diagnostic testing. Working much like IVF, embryos can be screened for the BRCA gene. This diagnostic testing has been offered for BRCA only since 2009.
Sharon is now on her second chemotherapy treatment, as her ovarian cancer has returned. This has been devastating as she feels she has done everything she possibly can. Unwilling to let it get her down, Sharon said: “I am not ready to go yet and will bite the bullet and get on with it.” Each time something has happened Sharon has just told herself she wants to be there for her children and grandchildren. Sharon sees BRCA groups as pivotal and gives them her full support, as she believes: “the more people know about it, the less frightening it becomes.” Awareness is key for Sharon: “If I’d known before I might have been able to do something about my cancer.”
To this day, Caroline and her family still don’t know where Albert got tested, or why Albert got tested. The biggest question remains, why didn’t he tell anyone? Ultimately, those details aren’t important. Caroline feels her father was able to shape her life, even after he had died. She says: “I am so grateful that he did what he did otherwise my sister and I would never have been tested, I feel he saved our lives as a last gesture.” Caroline is now waiting to have her ovaries removed, which can only happen after she turns forty. The preventative surgery has meant for her, the choice to “save my life or live in fear”.
