Previvors and Life-Changing Decisions

LOS ANGELES, Calif. (Ivanhoe Newswire) — Instead of hearing ‘you have cancer’ these people hear ‘you may get cancer.’ They are called previvors, meaning their chances of getting breast or ovarian cancer are higher than most people. So the care they need is different than actual cancer patients.

Somaya Ishaq couldn’t put her finger on it, but recently something just wasn’t right. To get down to the bottom of it she decided to undergo genetic testing.

“I wanted to see why I wasn’t feeling a hundred percent and I had a gut feeling,” Ishaq told Ivanhoe.

Tests revealed she had a harmful BRCA2 gene mutation. Her doctor said that meant a higher risk of breast and ovarian cancer. Ishaq’s mother is an ovarian cancer survivor.

“Where genetic testing I think is vital is in women and men who have family histories that would support the possibility of an actual diagnosis that we could act upon,” detailed Lisa Abaid, MD, gynecologic oncologist at Hoag Hospital in Los Angeles, California.

This wife and mother of two is called a ‘previvor,’ predisposed to cancer, but hasn’t yet had the disease.

“I shed a lot of tears by myself, with my husband, just thinking about it,” said Ishaq.

Dr. Abaid told Ivanhoe “She felt that the appropriate course for her with respect to her ovarian cancer risk was to remove the ovaries.”

Ishaq welcomed her doctor’s one-stop, holistic approach with a multidisciplinary team of experts.

“Eating healthier, going go the gym, the yoga and meditation, there’s bits and pieces of all that, that I do use in my daily life now,” detailed Ishaq.

Ishaq plans a double mastectomy in a few years to further reduce her cancer risk.

“Whenever I’m physically and mentally ready, then I’m ready to do the next step,” continued Ishaq.

For now, she runs full speed ahead cheered on by a family that supports her decisions — no matter how difficult they are.

The American Cancer Society says more than 23,000 women will be diagnosed with ovarian cancer this year and more than 266,000 with invasive breast cancer. If you have a family history of either one, have a frank and open conversation with your doctor about your risks and choices.

BACKGROUND: A “previvor” is a word used to describe those who have a higher risk for cancer due to close family history or due to certain genetic mutations (like the BRCA1 or BRCA2), but do not have a cancer diagnosis. The non-profit organization FORCE (Facing Our Risk of Cancer) Empowered coined the term, previvor, 11 years ago. Like those with cancer, previvors can go through a range of emotions that can be debilitating. Some choose to deal with these emotions by having elective surgery as a way to prevent cancer. In the case of breast cancer, that would be a mastectomy, or a prophylatic mastectomy as it’s called. This is a highly controversial choice and many wonder why this would be necessary. Physicians may even recommend just getting screened more often. However, for the many who choose this path, this is the only and correct answer for them. Prior to having their breasts removed, many have received genetic testing and have received a positive BRCA1 or BRCA2 result. Not all previvors choose surgery. Some choose genetic testing only, just as some of those who are diagnosed with cancer do. Genetic testing can help a person know their potential risk for cancer, but at the same time, not everyone is a candidate for genetic testing and insurance may not cover the cost of this test.

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ARE YOU A PREVIVOR?: Genetic testing for cancer is only a recent phenomenon, and our awareness of cancer risk is improving every day. It’s important to have an understanding of family history and genetic blueprint and to learn about hereditary cancer and genetic testing if applicable. Since the understanding of hereditary cancer is in its infancy, there is a lot of inaccurate information out there as well. There isn’t a simple blood test that can tell you what cancers you are likely to develop, nor any solid guidelines for the majority of possible scenarios. A basic understanding of statistics is also important when you read about genetic risks to avoid unnecessary fears. For example, you may hear that having a particular gene doubles your risk of a type of cancer. Statistics like this can be misleading. If it is referring to cancer such as breast cancer, cancer that occurs in 1 in 8 women, this is an important finding. Having double the risk would give you a 1 in 4 risk of developing the disease. In contrast, if rare cancer occurs in only 1 in 100,000 people, hearing that you have double the risk could be frightening. Yet, this would only mean that your risk is now 1 in 50,000.

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EARLIER DIAGNOSIS – LESSER TREATMENT: Tens of thousands of patients diagnosed early each year with the most common type of breast cancer can now safely avoid chemotherapy treatment without worrying if it is the right choice, according to groundbreaking research. The findings, which were published in the New England Journal of Medicine, showed that, “Seventy percent of women diagnosed with the most common type of breast cancer that has not spread to the lymph nodes can forgo chemotherapy without risking their chance of recurrence or ability to be cured,” said Loyola Medicine oncologist Dr. Kathy Albain, a co-author of the study. “The study should have a huge impact on doctors and patients. We knew we were over-treating a lot of women with chemotherapy, in our gut, and can now de-escalate toxic treatments and do that with certainty,” said Albain.

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