A previvor analyzes the similarities and overlaps between living with Lynch syndrome and a BRCA mutation.
A few years ago, Karen Malkin-Lazarovitz, founder of the BRCA Sisterhood on Facebook, reached out to me and asked me if I would be interested in being an administrator for the group. The BRCA Sisterhood is the largest BRCA Facebook support group for women, with 10,000 members – it's an incredible resource for those recently diagnosed with BRCA and are considering options for how to proceed. Karen's group includes women from all over the world who share their stories, decisions and intimate details of their lives. Since I have had my own share of issues following the removal of my ovaries, this group has also been a huge source of emotional support for me. In addition, I have gained tremendous insight into the reality of what life is like when you carry a BRCA gene mutation.
When Karen reached out to me it was because many women in the group who were undergoing genetic testing for BRCA discovered they, in fact, had one of the five known Lynch syndrome mutations. There were also a few women in the group who carried both a BRCA mutation and a Lynch syndrome mutation. Karen took note of my advocacy work and requested I join her administration team. While cancer risks and implications differ between Lynch syndrome and BRCA, there happen to be many parallels between the two hereditary cancer syndromes. Many women who carry a mutation in BRCA or Lynch syndrome may undergo similar prophylactic measures – specifically regarding the removal of the uterus, ovaries and fallopian tubes.
However, many BRCA-positive women also undergo prophylactic double mastectomies to drastically reduce their risk of breast cancer. Some opt for breast reconstruction with the hope of trying to regain some level of physical normalcy. While these BRCA-positive women may be reducing their breast cancer risk by having their breasts removed, many also suffer long-term consequences as a result of their breast surgery or reconstruction. Some women report chronic pain in their upper body, a loss of upper body strength and/or a lack of sexual sensation in their chest. Some women opt to keep their nipples, others have 3D nipples tattooed, while others decide to forgo nipples altogether. After my ovaries were removed, I felt highly defeminized – I cannot begin to fathom how women with BRCA gene mutations who undergo mastectomy feel, specifically those who cannot afford to undergo breast reconstruction, as that would be something very important to me.
Sadly, not everyone has access to Angelina Jolie’s breast surgeon or top-notch medical care or can afford to take extended periods of time off of work. Not everyone understands that women with BRCA gene mutations are not simply having “boob jobs.” Women are doing this to save their lives. Mastectomy and breast reconstruction can be a long, arduous, painful process. Plastic surgeons’ skills and aesthetics vary. Just like any other profession, there are those that are great and those that are not so great. A patient can be thrilled with her final results or a patient can be unsatisfied, or even disfigured, which then only brings on a constellation of other problems – financial, physical and emotional.
The one thing that concerns me deeply is that many women and men with BRCA mutations may know they are carriers and the women are going to great lengths to reduce their breast and ovarian cancer risks but are not being properly screened for other cancers for which they are at risk. Men can also carry and pass on a BRCA gene mutation to daughters AND sons. Other organs which are at increased risk of developing cancers associated with the BRCA mutations include: the pancreas, stomach, colon, skin and the prostate in men. In addition, one in 43 Ashkenazi Jews are BRCA mutation carriers. Unfortunately, many Jewish people have significant medical gaps in their family medical history due to losing their families in the Holocaust and may therefore not have a complete family history, that may have tipped them off to being at increased risk.
For example, it is recommended that screening for colorectal cancer for women and men with a BRCA1 mutation be initiated at an age of 40 years but most BRCA carriers don’t know about this risk for colon cancer. According to Ellen Matloff, M.S., CGC and President of My Gene Counsel, “Some studies have suggested that women who carry BRCA mutations are at increased risk for colon cancer, especially if they have a strong family history of the disease, while others show no increased risk. Although national guidelines do not recommend additional colon screening for BRCA carriers, it is recommended that carriers explore their family history for colorectal cancer and, if there is a strong family history and/or cases diagnosed before age 55, speak to their physicians to see if they qualify for additional and/or earlier surveillance.”
More than this, most women who are having genetic testing are not even meeting with a certified genetic counselor; their doctors are not referring them to one. Even if you have undergone the prophylactic surgeries, please be sure to seek out a certified genetic counselor so you may better understand your particular genetic mutation as well as ensure that you are undergoing the correct health screenings. Appropriate screenings, even after surgeries are still important to maintain your health. This way, if cancer occurs, it may be detected as early as possible when it’s most treatable.
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