I was participating in a conversation on a Lynch syndrome platform on a social media site, not too long ago where a woman with children had recently been diagnosed with Lynch syndrome. She was questioning a group of people, basically strangers who share her genetic nemesis, about whether or not she should have another child because of her Lynch syndrome + status. For those of you new to this blog, Lynch syndrome is an autosomal dominant mutation.
What I particularly love (not really, not so much) are the assumptions that most people make about others, especially when they do not know crucial factors, which are necessary to make thoughtful, educated comments in regards to Lynch syndrome; specifically, things such as education level, socioeconomic status, cultural and religious background, and other important factors which may contribute to one’s person and situation. I am terribly afraid that we all do not (unfortunately) share similar resources. Furthermore, many people simply assume that others share their religious convictions – I’m all about supporting things which “get you through the day” be it a strong belief in a Supreme Being or putting on lipstick (pucker up and apply!) before prophylactic surgery so that you may channel your inner feminine goddess, but please do not assume we all share your belief system.
I detest clichés, especially when it comes to genetic mutations and I want people, especially those within the Lynch community to know that knowledge is NOT power for everyone; Lynch syndrome CAN be a death sentence for some even when they know they hold the mutation and have been vigilant with their screenings. Things are not so black and white in the world of Lynch syndrome; there are various shades of grey we must consider. There are people who have been vigilant and have been religiously screened and still, for some reason unbeknownst to many of us, are dying of cancers related to Lynch syndrome.
Lynch syndrome is a difficult diagnosis to reconcile, especially when young children are involved. At the risk of sounding controversial and provocative, some of the conversations on various Lynch syndrome platforms are not based on logical thought but rather on emotions. I have a problem with this for two reasons. For one, there is enough misery in the world and if we have the power stop it (in this case, knowledge of a Lynch syndrome mutation can be empowering) because we may assume some control over perpetuating these familial cancers, then we should. My apologies in advance if you do not agree with this. If you can afford it, then I highly recommend you explore preimplantation genetic diagnosis (PGD) — a costly procedure used prior to implantation to help identify genetic issues within embryos created through in vitro fertilization to prevent certain diseases or disorders from being passed on to the child. For more information regarding this procedure, please go to: http://americanpregnancy.org/infertility/preimplantation-genetic-diagnosis/.
Then, there is always adoption, although some may argue there is also a high level of uncertainty involved there, too. Regardless, in my humble opinion — if you have a deleterious gene mutation it should give you tremendous pause about your life, and that of those you are considering of bringing into this world. And do yourself and your future children a favor — do not base major life decisions on potential, future scientific advances.
Second, some people are highly inconsistent in their thought processes. They complain about how horrible their cancer is, or was, and in many cases, how it has ruined or has been a source of immeasurable grief in their lives, and go on to to tell us how their greatest source of misery is knowing the may have unknowingly passed this mutation onto their children. Yet, these horribly awful and negative situations do not give them pause, especially when it comes to advising others about reproduction under the pretense of having a deleterious gene mutation.
Third, then there is the issue of those who are not white with middle-to-upper class financial resources – where are those with Lynch syndrome who are marginalized? How many African-Americans and Latin and Hispanic-American people do we actually communicate with on these Lynch platforms? Not too many. Why? Because many of them are less likely to seek genetic counseling, genetic testing, and have access to medical specialists such as oncologists – they are less likely to know they have genetic mutations because they simply do not have access to these resources which may potentially save their lives. We need to change this and tailor advocacy efforts to specific groups. Please read: http://www.ihavelynchsyndrome.com/book-review-waiting-cancer-come/#.VEkwmku52GI for more on this topic.
There are a few other points which must be shared — one woman recently told me she did not want her daughter to read my site because she was afraid it would prevent her from having the recommended prophylactic hysterectomy and oophorectomy because of my negative experience with surgical menopause at 40. Please note, it is not my intention to discourage others from undergoing these procedures; I just want people to be aware of the implications of such things (like removing ovaries) and to recognize the further away from menopause you are when you undergo such surgeries, the more difficult it may be for you to adjust. My doctors minimized what would happen to me; I know my words resonate with many, many people because of the emails I receive. Many are grateful for my ability to articulate what they feel; but mostly, they are happy to know that they are not alone in the Lynch labyrinth and that others share their darkest thoughts.
I read something recently which really disturbed me because it is a testament to the fact that some with Lynch do not understand the laws of inheritance in regards to this particular mutation. Dominant inheritance means an abnormal gene from one parent can cause disease, even though the matching gene from the other parent is normal. The abnormal gene dominates. Each child’s risk is independent of whether their sibling has the disorder or not. For example, if the first child has the disorder, the next child has the same 50% risk of inheriting the disorder. Children who do not inherit the abnormal gene will not develop or pass on the disease. In other words for those of us with Lynch, EACH ONE of our children has a 50/50 chance of inheriting the mutation; it is incorrect to believe that only “half” of your children are at risk of inheriting this mutation.
Hope you’re all doing well and enjoying the beautiful fall. Be sure you’re eating all the nourishing, amazing foods available this time of year. More later.