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  1. #101
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    Quote Originally Posted by Zemgirl View Post
    The key with Lynch and with BRCA1 and 2 (as well as other genetic conditions) is to be diagnosed early enough to be able to take preventive action (surgery/screenings) and make decisions regarding future testing and care. Often times people don't get this sort of genetic testing, and then the first they hear about it is when they already have cancer, sometimes advanced cancer. If Jolie's actions raise awareness regarding the importance of genetic testing, I am all for it. Not everyone needs to be tested, but people need to be aware whether they are at risk, and if so, the testing should be available.
    Being tested is absolutely key. Though with Lynch, having the "at risk" parts removed is not really an option. The risk is most high for colon cancer, but it can involve the stomach, breasts, ovaries, pancreas, urinary tract, liver, kidneys, uterus. You can't remove all of those things prophylactically. The person I know, had no family history of Lynch. So, when she started showing symptoms the doctors thought it was IBS, Crone's, Celiac. They put her on a bunch of different diets and meds. It wasn't until she was in excruciating pain, one night, and taken to the ER that a pelvic scan was done. Because she was so young, no colonoscopy had been done either. The scan showed a mass, then the colonoscopy was finally done. She had to have 80% of her colon removed. Fortunately, her young age made it possible for them to reattach her intestines and she did not have to have a bag. And, thank goodness no lymph nodes were involved. But, she has frequent gastro problems. She has to be tested for all of the above cancers frequently. And she is fearful of having children. Pretty tough thing for a virtual child to have to go through. Her insurance company argued about the frequency, but eventually allowed it. Believe me, if this girl could have had the "at risk" parts removed before the cancer happened, she would have. The problem, for her, was that she didn't know she had Lynch, you can't be certain where it will show up, and you can't just take out the colon, stomach, liver, kidneys. She is one of the bravest people I know.

  2. #102

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    Quote Originally Posted by cruisin View Post
    Being tested is absolutely key. Though with Lynch, having the "at risk" parts removed is not really an option. The risk is most high for colon cancer, but it can involve the stomach, breasts, ovaries, pancreas, urinary tract, liver, kidneys, uterus. You can't remove all of those things prophylactically.
    Yes, I know - that's why I wrote surgery (more relevant for BRCA, though there are some options for Lynch) or screenings (for the various cancers people with these conditions are at risk for). Obviously preventive surgery is not an option when there are so many organs at risk, but frequent screenings at a younger age mean better odds of catching things early on, so it is important to get the testing and diagnosis as soon as possible.

  3. #103
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    Quote Originally Posted by Zemgirl View Post
    Yes, I know - that's why I wrote surgery (more relevant for BRCA, though there are some options for Lynch) or screenings (for the various cancers people with these conditions are at risk for). Obviously preventive surgery is not an option when there are so many organs at risk, but frequent screenings at a younger age mean better odds of catching things early on, so it is important to get the testing and diagnosis as soon as possible.
    I guessed you knew all of that, I just wanted to give more info for anyone who might not . I so, so wish that my friend knew she had Lynch. It is devastating when you don't even know to test for it, and find out you have it at 22, when you get cancer.

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    crusin, ((((hugs and support)))) to your friend.

  5. #105
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    Quote Originally Posted by skatesindreams View Post
    crusin, ((((hugs and support)))) to your friend.
    Thank you, she is very dear to me. She, in the middle of all of this, has managed to go to law school (on a huge merit scholarship), not miss a class, work to support herself, and graduate in the top of her class. Talk about strength! And, she is one of the sweetest people anyone could have the good fortune to know.

  6. #106

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    Wow!
    to her.
    She is fortunate to have you, too

  7. #107
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    Quote Originally Posted by skatesindreams View Post
    Wow!
    to her.
    She is fortunate to have you, too
    The part I do is easy. I get to love her. And, when she lets me, spoil her a little. Amazing, how you can grow to care so much about a person you've only known for about 3 years. I feel like she is one of my own kids.

    Oh, and she was managing editor of her school's circuit review. And she got a fantastic clerkship for this fall!

  8. #108

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    Quote Originally Posted by Ziggy View Post
    It's like people praising 'philanthropists' who are spending 0.000001% of their huge incomes on charity.
    It's lose/lose for celebrities. They donate, and it's not enough or they're only doing it for the publicity, if they don't (or do so privately), they're mean since they're so rich and it would be a drop in the ocean for them. I say that ANYONE who gives their time or resources to those less fortunate should be praised, regardless of how rich they are, or how much they give. But it's a personal choice, their money is theirs to do what they wish, just like mine is. I'm glad no one scrutinises and judges my giving, or my health choices.

  9. #109

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    Quote Originally Posted by antmanb View Post
    That isn't what snoopy said. "Suffered virtually no loss" was (i think) the phrase that was used. And I'm still flabbergasted that someone is trying to defend that. It wasn't set up as if it was about money, and if it was about Jolie being wealthy and therefore vitually losing nothing, then I am even more flabbergasted, that apparently if you are rich and famous you desrve less sympathy for going what through what you have - is the fact you're rich supposed to compensate you for going through a double mastectomy and reconstruction?
    I'm not aiming to defend Snoopy, but it's possible that what she said didn't mean the same thing to her as it did to those who read it. Or, that she chose her words poorly. I'll give her a chance to explain before I jump down her throat.

    And no, being rich and famous doesn't mean you 'deserve' less sympathy. Evidence also shows that it doesn't make people happy (although struggling to survive does make people unhappy). The rich and famous can be miserable.

    And no again, being rich doesn't compensate for a double masectomy and reconstruction. But it sure can makes the experience easier to deal with and lower the stress involved. I'm sure AJ would acknowledge that.

    And AF has her circle of loved ones who support her, just as most people do. Members of the public aren't required to have a certain amount of sympathy for her, we don't even know her.. There are many in far worse circumstances than she is - women die of breast cancer because they couldn't afford the test, or the health care, or the treatment - or didn't have access to health care. In some ways, she is blessed. And I've no doubt she would - again- acknowledge that herself.

  10. #110
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    Quote Originally Posted by Zemgirl View Post
    I disagree. Health scares are scary, period.
    Scary, bad, sad, difficult, they all are gradable adjectives.
    You say though that being in a position where you have access to the best care and support system for you and your family doesn't make a difference.
    Clever: society just made the ultimate progress, people are finally equal.

  11. #111
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    Quote Originally Posted by loulou View Post
    Scary, bad, sad, difficult, they all are gradable adjectives.
    You say though that being in a position where you have access to the best care and support system for you and your family doesn't make a difference.
    Clever: society just made the ultimate progress, people are finally equal.
    I think you took Zemgirl's quote out of context.

    Also, I don't think anybody denies that having resources and wealth would make one in a better position to deal with the consequences of having a high risk of a potentially terminal medical condition (such as having the best doctors, knowing your kids will be taken care of, etc.), but ultimately the fear of dying is still the fear of dying. Also, I think Jolie is cognizant about her situation regarding her young kids, and I bet she was very worried about leaving them even though Brad Pitt has the resources to care for them and they can hire the best nannies in the world. I mean, no matter what, she's their mother and having all the money in the world can't replace your mother.

  12. #112

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    Quote Originally Posted by VIETgrlTerifa View Post
    I think you took Zemgirl's quote out of context.
    Indeed.

    Also, I don't think anybody denies that having resources and wealth would make one in a better position to deal with the consequences of having a high risk of a potentially terminal medical condition (such as having the best doctors, knowing your kids will be taken care of, etc.), but ultimately the fear of dying is still the fear of dying. Also, I think Jolie is cognizant about her situation regarding her young kids, and I bet she was very worried about leaving them even though Brad Pitt has the resources to care for them and they can hire the best nannies in the world. I mean, no matter what, she's their mother and having all the money in the world can't replace your mother.
    Another issue that I mentioned in the earlier post, and I imagine would be a concern for anyone who receives such a diagnosis, is that she's likely worried about the possibility that she's passed this genetic mutation on to her biological children; obviously not the sort of thing a mother would want for her kids, even with the hope that there will be medical breakthroughs that will allow for better outcomes in the future.

  13. #113
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    Quote Originally Posted by Zemgirl View Post

    Another issue that I mentioned in the earlier post, and I imagine would be a concern for anyone who receives such a diagnosis, is that she's likely worried about the possibility that she's passed this genetic mutation on to her biological children; obviously not the sort of thing a mother would want for her kids, even with the hope that there will be medical breakthroughs that will allow for better outcomes in the future.
    Absolutely!

  14. #114
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    Quote Originally Posted by Japanfan View Post
    She could lose multiple times the money I'll make in a lifetime and still be a wealthy woman. And I doubt she'll lose roles. As someone else pointed out, her breasts are probably better now than they were before the reconstruction. And she can afford to maintain them and replace them if need be. Her sex appeal won't be compromised.
    Sex appeal is largely mental. She has changed our mental image of her. I am sure her publicists hashed this out and she was given advice not to go public for fear it would change our image of her from at least one person, it not multiple.

    Now when the young boys see her on screen, they may be thinking of cancer and disease when they look at her boobs or "oh those are fake". Maybe not. But it's a risk and a fear and it is part of what makes her actions brave. No, not as brave as rescuing a kid from a burning building but braver than staying silent, which she was perfectly within her rights to do. It's her medical issues and those don't belong to the public.

    Personally I think it would be great if those things didn't happen and her career thrives because it would advance society and help other women in this situation.

    Quote Originally Posted by loulou View Post
    That being said, I don't think AJ is as scared as just anyone else when she knows about the gene. She knows she can count on the best doctors, the best cares, she knows she won't have to go pick up her meds or her groceries while sick, she knows her children are well taken care of, she knows whatever doubt, or fear, or reassurance she needs she can probably call a darn good doctor anytime, and he/she will put his/her best effort into her care.
    She doesn't know she can beat death. Or that she didn't pass this down to her kids.

    I actually think it's a bit naive to think that money somehow isolates you from fear in these situations. I am pretty sure the first thing that went through Jolie's head when she found out she had the gene wasn't "Thank god, I'm rich and it won't be as bad as if I was poor." I'm pretty sure it was something along the lines of "OMG, I hope I don't die!" And the next big fear was probably "Crap, I've probably given this to my kids. I suck."

    The money thing is more of a silver lining. It's how you console yourself when you get some of the worst news of your life. And it comes later. Often much later. And sometimes is not much consolation. Especially in this case when she is going to have a hysterectomy and lose her ability to have more biological children. She's had her choice taken away from her through no fault of her own and being rich didn't protect her from that either.
    "Cupcakes are bullshit. And everyone knows it. A cupcake is just a muffin with clown puke topping." -Charlie Brooker

  15. #115
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    Not to mention: "OMG, I am losing my womanhood!" Breasts and ovaries, that is. No mention of a hysterectomy but likely that too. As some had said, surgical menopause is tough, whether you are rich or not.

    Is she brave? I don't know. But it's nice of her to use her name to make people aware of this and to help patients in the same boat to feel perhaps a smidgen less isolated.
    "Nature is a damp, inconvenient sort of place where birds and animals wander about uncooked."

    from Speedy Death

  16. #116

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    I suspect that Jolie picked the timing of her procedures to coincide with the decision to not have any more biological children. This would not be unheard of with women who have certain types of cancer, and have some flexibility and knowledge, like Jolie, to set their schedules. Doctors usually advise such things. IME, lots of decisions and options offered to patients wrt any ob/gyn issues revolve around the patients desire (or not) to have children.
    Figure skating is hard.

  17. #117

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    Quote Originally Posted by snoopy View Post
    I suspect that Jolie picked the timing of her procedures to coincide with the decision to not have any more biological children. This would not be unheard of with women who have certain types of cancer, and have some flexibility and knowledge, like Jolie, to set their schedules. Doctors usually advise such things. IME, lots of decisions and options offered to patients wrt any ob/gyn issues revolve around the patients desire (or not) to have children.
    Maybe. Maybe not. And maybe, just maybe, AJ doesn't know whether or not she wants to have more children, but her fear of cancer is overshadowing her regret about making this decision. Forced menopause does not simply mean the inability to bear more children; it has wide-ranging, far-reaching effects that literally change a woman's life -- especially one as young as AJ (37). I know many women who thought they didn't want to have children or thought they didn't want to have more children, and changed their mind in their 40s.

    O-

  18. #118
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    If she wants more children she seems very comfortable with adopting.
    3539 and counting.

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  19. #119

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    Quote Originally Posted by milanessa View Post
    If she wants more children she seems very comfortable with adopting.
    Yes, she does, and that's a beautiful thing. But, AJ did choose to have biological children as well, and perhaps she'd like to experience that again, but won't be able to? None of us really know.

    O-

  20. #120
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    Quote Originally Posted by OliviaPug View Post
    Maybe. Maybe not. And maybe, just maybe, AJ doesn't know whether or not she wants to have more children, but her fear of cancer is overshadowing her regret about making this decision. Forced menopause does not simply mean the inability to bear more children; it has wide-ranging, far-reaching effects that literally change a woman's life -- especially one as young as AJ (37). I know many women who thought they didn't want to have children or thought they didn't want to have more children, and changed their mind in their 40s.

    O-
    Very good points.
    "Nature is a damp, inconvenient sort of place where birds and animals wander about uncooked."

    from Speedy Death

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