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Issues and Discussions Regarding When to Have Children and When to Start Removing Parts of My Body

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When you know that a mutation increases the likelihood of your developing cancer, it puts a lot of pressure on you to think about the timeframe in which you should have children and then preventatively remove certain organs and other parts of your body. From day one of learning of my mutation, I have known that the recommendation is for me to have children early and subsequently have a hysterectomy and/or oophorectomy. I am 28, and I am not a mother. It has been a struggle not to rush into having children for the sake of being done giving birth at an early age so I can subsequently remove my uterus and/or cervix, and possibly also fallopian tubes and ovaries. It has taken great effort, and a lot of therapy, to put these considerations in the back of my mind so that I can live in the present. I have successfully calmed the angst that once propelled me to make rash declarations like that I would be done having children and without a uterus by the age of 30. Like a rational person, I will have children when I am truly ready -- which right now I am not.

This semi-patient attitude has taken me a lot of time to come to. (I say semi-patient because despite knowing that I will wait until I am ready and in the right place to have a child, I am still a girl and thus part of me cannot help but always want a baby.) At many points in the past 10 years, I have made decisions based on anxiety stemming from my mutation. I almost got married at the age of 24, not because I knew it was right, but in part because I thought if I did so, I could have children early and have a hysterectomy before the age of 30. I also had this feeling in my relationship with my college boyfriend -- I thought that by being in a serious relationship at the age of 21, I would be able to follow the recommendation about having children earlier than later. I think it was because at the time I thought like this, I was in my late teens and early 20s. I remember being 21 and thinking 30 was so old -- that I had to be done having children by then. I think that I probably gave the age of 30 so much significance because my mommy had me at 31 -- like that somehow contributed to her cancer developing at 38 as opposed to my aunt, who with the same mutation did not have cancer until she was in her 50s. Now that I am 28, and extremely thankful that I have come to realize how ridiculous my rush to have children when I was younger was, I do not look at 30 as old. I am very close to 30, and I am in no way panicked by the fact that I am years away from the having children phase of my life.

The desire to have a hysterectomy early in my life should never have and does not now outweigh the fact that the creation of life should not be rushed. In feeling a total lack of control for many years after learning about my mutation, I just could not distinguish or balance competing interests of health and a normal life. I also think that at times when my relationship with my family was not what it is now -- excellent -- and when I was not in the kind of loving relationship that I am now, I felt that I had so much love to give, and it seemed natural that a child would be the recipient of that love. For some reason, the recommendation that I have a hysterectomy felt like a mandate, and not something to discuss as I grow older and am ready in my life to undergo.

While I felt an impulsive need to have a hysterectomy, I did not have the same reaction to the possibility of having my colon removed. At the same time I learned of the recommendation to have a hysterectomy and oophorectomy, I also leaned about the option of removing the colon. I remember there being about one minute, almost immediately after I learned of my mutation, where I said, "let's do it." Clearly, I was advised to take a step back -- we were not doing anything radical immediately. Instead, as we discussed the ways in which colonoscopies can detect cancer early, and the great capacity to treat colon cancer if detected in its early stages, I was able to step back, take a deep breath, and move this impulse to the back of my mind.

I know it may seem irrational that I have felt so much more anxious and rushed to remove my gynecological organs and parts and not my colon, particularly with the greater frequency in my family of colon cancer than ovarian, uterine or cervical cancer. However, I think it is that the medical world knows so much more about the relationship between Lynch Syndrome and colon cancer, and has more confidence in the method of detecting it, through colonoscopies, that I too trust that the method I use to screen for cancer will work, and am thus less concerned about removing my colon that my gynecological parts.

I feel very lucky to have a sister who is a gynecologic oncology fellow, who has been studying and publishing information on the relationship between Lynch Syndrome and gynecologic cancers. A study she recently conducted showed that of the medical students surveyed, the majority learned more about Lynch Syndrome each year in school. However, students became more familiar with Lynch Syndrome's relationship to colon cancer than to gynecologic cancers. Her article emphasizes that the medical community should pay greater attention to the ways in which Lynch Syndrome causes gynecologic cancers. Her conclusion affirms that hysterectomies and oophorectomies are useful prophylactic measures to reduce the risk of cancer. However, she has discussed with me that these surgeries themselves present other risks, and the decision to have them must be balanced against those risks.

I sometimes think that my willingness to remove my gynecologic organs is unusual for someone my age, or any age for that matter. I know that many women worry that removing their breasts, or uterus, fallopian tubes, and/or ovaries will make them less of a woman. I am aware that I may not have the same outlook on the surgeries when it is actually time to seriously discuss having them. However, having seen my mom and best friend have double mastectomies and reconstructions, and my mom a hysterectomy, I in no way feel afraid. These two strong, amazing women did what they thought would give them the best chance of being cancer free -- and from what I see, they are both beyond confident in their female senses of self and in their femininity.

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