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A genetic disorder leaves you a choice: do nothing, risking an aggressive cancer or have life-altering elective surgery. What would you do?
You are diagnosed with BRCA1 and BRCA2 genetic mutations. BRCA stands for BReast CAncer susceptibility genes. People with these gene mutations, both men and women, can be at greater risk for breast cancer and reproductive organ cancers. If other genetic mutations are also present, the risk might be significantly multiplied. You are told that by having a double radical mastectomy and surgical removal of your internal reproductive organs (hysterectomy and removal of ovaries for women, orchiectomy and removal of prostate for men), your probability of developing an aggressive cancer would drop to less than 3 percent. By doing nothing, you run a 95% risk of developing cancer by middle age. What would you do?
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October 11, 2009 03:16 AM
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I have a BRCA1 genetic mutation. I have decided to have a hysterectomy/oophorectomy and a double masectomy. My cancer risk is very high though because not only do I have a BRCA1 mutation, but breast cancer runs in my family (4 women), ovarian cancer runs in my family (1 woman) and cervical cancer runs in my family (1 woman). At 25 years old I have already had a uterine cancer scare as well and had pre-cancerous cells scraped off of my uterus in summer 2008. Uterine cancer is rare and even more rare in women who have not been through menopause.
Even though the threat of cancer is very scary it took me many months of constant thinking before I decided to have these surgeries. The double masectomy was the hardest to think about. I felt that my female organs weren't as bad to lose because I don't see them everyday and if and when I decide to have children I can just adopt. However, I see my breasts everyday and I felt that I would be looked at as less of a woman without them.
Then I met an amazing new friend who also has a BRCA1 mutation. She is having both surgeries and just had her hyst/ooph yesterday. We began talking about our fears and she made me realize that I am just as much a woman without breasts as I am with them. Not having breasts does not change who I am. I will get plastic surgery after the masectomy to have my breasts replaced and I am still scared to have that surgery done, but I think I have faced my fears now.
I rather be "breastless" and alive than "breastful" and not alive. Deciding to have these surgeries was the hardest decision I have ever had to make. I wish no one ever had to make a decision like this. It all comes down to personal choice though. A friend of mine said it breaks down to courage. In a way it does, because deciding to have these surgeries is very courageous, but not having them does not make a person weak.
I just hope that everyone who is afflicted with this mutation really takes the time to truly think about what it can do. This mutation can take your life. It can take you away from those you love. Having these surgeries can save your life. Be informed and make the decision that is best for you.
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Even though the threat of cancer is very scary it took me many months of constant thinking before I decided to have these surgeries. The double masectomy was the hardest to think about. I felt that my female organs weren't as bad to lose because I don't see them everyday and if and when I decide to have children I can just adopt. However, I see my breasts everyday and I felt that I would be looked at as less of a woman without them.
Then I met an amazing new friend who also has a BRCA1 mutation. She is having both surgeries and just had her hyst/ooph yesterday. We began talking about our fears and she made me realize that I am just as much a woman without breasts as I am with them. Not having breasts does not change who I am. I will get plastic surgery after the masectomy to have my breasts replaced and I am still scared to have that surgery done, but I think I have faced my fears now.
I rather be "breastless" and alive than "breastful" and not alive. Deciding to have these surgeries was the hardest decision I have ever had to make. I wish no one ever had to make a decision like this. It all comes down to personal choice though. A friend of mine said it breaks down to courage. In a way it does, because deciding to have these surgeries is very courageous, but not having them does not make a person weak.
I just hope that everyone who is afflicted with this mutation really takes the time to truly think about what it can do. This mutation can take your life. It can take you away from those you love. Having these surgeries can save your life. Be informed and make the decision that is best for you.
Personal Experience
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• Thank you for sharing your very personal dilemma and your decision with us. Bravo to your friend who helped you sort things through, and Bravo to you. An acquaintance who just had the surgeries Friday (prayers and positive energy from many for her) prompted me to ask this question.
Others may not make the same decision, and I respect them too - either way, it takes courage to make the decision and face the potential consequences. I do not think that either decision is wrong. Until you face it, you just don't know. I wish you happiness, health and good luck.
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October 08, 2009 12:17 PM
my opinion Helpful Answer? (0)
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I would have the surgery. I have 3 children to raise and a husband that would back me up. I am in my mid 40's and feel like there are lot a still have to handle before I am finished (none of which is effected by not have breasts or reproductive organs.) Of course this is easy for me to sit here and say because it hasn't happened to me. 9 years ago I had to have a partial hysterectomy. For me it was a hard pill to swallow. So I can imagine how it would be to have to make this decision.
The surgery will save your life and I believe that life is worth living. Yes it will take an adjustment and personally, I would have to get a little professional counseling in order to prepare me to accept the new me. I would also ask that my husband would also. I know that in this situation, he would support me, but I would want him to be emotional ready for the change also.
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The surgery will save your life and I believe that life is worth living. Yes it will take an adjustment and personally, I would have to get a little professional counseling in order to prepare me to accept the new me. I would also ask that my husband would also. I know that in this situation, he would support me, but I would want him to be emotional ready for the change also.
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October 08, 2009 12:25 PM
There would certainly be a grieving process involved. You would be losing a part of yourself not only physically, but in terms of self-image, as well.
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October 08, 2009 12:32 PM
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I believe humanity has become too dependent on medicine. Once there was a balance in this life, what was born was met with death at an equal rate, and we have upset this balance with our fear of mortality. Over population and a death sentence to our entire race is our reward. I would not have the surgery. If nature intends me dead, I'll be dead.
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October 08, 2009 02:27 PM
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I live child free by choice, I would have the procedure.
Were I a person who placed a high value on having a child I might delay the procudures until I had children . . . then again knowing that I might pass on such a gene may also impact my desire to have kids.
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Were I a person who placed a high value on having a child I might delay the procudures until I had children . . . then again knowing that I might pass on such a gene may also impact my desire to have kids.
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October 09, 2009 08:35 AM
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Thats a very tricky question indeed. I have not really thought about it that much but I can tell you what my granddad did when he was diagnosed - absolutely nothing and he lived another 8 years. I believe that the stress and the worry of getting cancer can be a big cause of actually getting it. Can you really believe everything doctors say nowadays?? Or are they just looking for more money and practice in surgery. I know this sounds harsh but I am really strange when it comes to doctors I much rather would research the herbal route.
http://www.healthy.net/scr/article.asp?Id=2010
This for example tells you about herbal remidies. Do you actually know what is in the air we breath, the food we eat and the water we drink?? Really we humans have no clue do we. Why is cancer getting more aggressive? We should look into that more instead of using surgery on people who might be better off eating healthy, breathing fresh air and drink real water instead of regenerated water that has been cleared with tons of chemicals.
Bottom line is I would turn to herbal and alternative therapies - no knives or chemo-therapie - all natural. I would also seek advise spiritual as I am a big believer of the strength of your own spirit.
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http://www.healthy.net/scr/article.asp?Id=2010
This for example tells you about herbal remidies. Do you actually know what is in the air we breath, the food we eat and the water we drink?? Really we humans have no clue do we. Why is cancer getting more aggressive? We should look into that more instead of using surgery on people who might be better off eating healthy, breathing fresh air and drink real water instead of regenerated water that has been cleared with tons of chemicals.
Bottom line is I would turn to herbal and alternative therapies - no knives or chemo-therapie - all natural. I would also seek advise spiritual as I am a big believer of the strength of your own spirit.
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