Angelina Jolie had a preventive double mastectomy...read her brave essay

Discussion in 'Off The Beaten Track' started by dardar1126, May 14, 2013.

  1. my little pony

    my little pony snarking for AZE

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    i dont understand why having reconstructive surgery makes her decision somehow less than others who didnt for some people. i'm not addressing that to you, liv. i have read some comments here and elsewhere today and i've been meaning to ask.
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  2. Sparks

    Sparks Well-Known Member

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    Actually, reconstructive surgery is a lot more painful and the recovery time is longer.
    Women are allowed to make their own choices about their bodies without judgement from people who know nothing about their struggle.
    As a BC survivor, I'm telling you that if I had the test and it was positive, I'd get my breasts removed.
  3. OliviaPug

    OliviaPug Well-Known Member

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    I know this is a discussion board, but I don't understand any of the negativity re Jolie's decisions and/or her reconstructive surgery. 87% is nearly a certainty. Cancer isn't something that you can necessarily cure -- even if found early. Maybe screening has skewed that view, but not all cancers are created equal. If I was found to have this genetic mutation, I would be first in line to make sure I gave myself the best possible chance of living a long life -- especially if I had children. And reconstructive surgery is a personal decision. If a woman feels it will improve her quality of life, she should do it!!! That's what it's there for!

    I know too many folks who did absolutely everything right as far as screening is concerned, and didn't make it -- my beloved stepdad included (prostate cancer). His PSA never indicated ANY issues. His physicians never felt any irregularities with digital examinations. He had a very aggressive form of cancer that did not respond well to any available treatment (prostatectomy, hormone, chemo).

    Sorry, but waiting for an 87% chance to happen, is just plain stupid when there are viable options to avoid this killer of a disease.

    O-
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  4. leesaleesa

    leesaleesa New Member

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    I would agree that surgery is the last resort usually, but she knew she had an extremely high probability of going through surgery and chemo later, and took the course that had less risk for death at a young age, relatively. If I had the same choice to make, I would do the same, no hesitations. Why wait for the inevitable when you can nip it in the bud?

    What she did takes cast iron balls. Very admirable.

    I find that curious too, in this day when the advances in cosmetic surgery are so amazing. There is no need for a woman to not have reconstructive surgery after mastectomy, unless she chooses not to. My co worker had a double mastectomy and reconstructive work and insurance covered it, so why ever would Angelina Jolie, who is well off, not do the same?
    Last edited: May 15, 2013
  5. IceAlisa

    IceAlisa Port de bras!!!

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    Then would you stop brushing your teeth? Start smoking? Engage in other unhealthy activity? Because her risk of cancer is comparable to a smokers. Yes, we are all going to die but no one wants to die after having gone through surgery chemo and other associated treatments. They are torture.
  6. Spareoom

    Spareoom Well-Known Member

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    This is what I thought too after reading her article. Angelina is someone who is extremely famous not just for who she is as a person, but what kind of image she portrays. Women are going to look at her and say, "Well, if Angelina could do that and still be super sexy and not embarrassed and whatnot, why can't I?"
  7. FiveRinger

    FiveRinger Well-Known Member

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    I think that what Angelina did was amazing. She 1) took control of her own health and well being and made an educated decision that was best for her and her family and 2) went public with a very private issue that she didn't have to discuss but felt compelled to. It was unbelievably brave on so many levels.

    My concern is that there are so many women who do not have access to the kind of care Angelina got. How many people will fight with their insurance companies about coverage for testing? I saw on television this morning that all won't cover it and it costs thousands. What about the ones who don't have coverage at all? Testing only saves lives when you have access to it. Isn't this considered preventive medicine?
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  8. Andrushka

    Andrushka New Member

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    I think it was a brave and wise decision on her part.Someone in my family had a similar situation 8 years ago,and she had a double masectomy;also,I myself had a breast cancer scare year before last,making this sort of a decision is something I had to consider and the concept that you might have breast cancer is unbelievably frightening...my results came back good.Thank the Lord.No surgery.
  9. Jimena

    Jimena Well-Known Member

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    She mentions that in her article: very few women have access to the genetic testing:

  10. Japanfan

    Japanfan Well-Known Member

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    There is no logic in your statement. Yes, reducing her chance of getting breast cancer does not mean she cannot get another kind of cancer. But she is highly genetically predisposed to breast cancer and made an informed decision to mitigate that risk.

    If you at look the average likelihood of a person's getting cancer, it is much lower than Jolie's likelihood of getting breast cancer.

    What you seem to be suggesting is that the surgery won't make any difference in Jolie's susceptibility to cancer and that's where you aren't being logical. She has reduced a known cancer threat dramatically, so her overall likelihood of getting cancer will be reduced. Sure, she might get an another cancer at some point in her life. But the likelihood of that has been reduced. Plus, she is far less likely to die from cancer at 56 than her mother did.

    Many people would make the same decision if they had access to necessary funds, resources and supports.
  11. Anita18

    Anita18 Well-Known Member

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    In a similar vein, I'm getting my ass to the gym and lifting weights like one of the guys because I don't want to end up like my grandmother did - never walking again after breaking her hip and wasting away for a year completely bedridden. It was horrible to watch her give up like that, believing she was incapable of recovering. My own mother was diagnosed with osteoporosis at 52. Hopefully she'll continue to lead a more active life and not simply give up like her mother did, but already, she has to be very careful about falling. I've already promised her that she insists on staying in bed for more than a week, I'll go to her house and kick her out of it myself. :p

    Will the weightlifting help? I don't know. Maybe it won't - my cousin in medical school is pretty sure I'm screwed no matter what I do because of my genetics. But I'm sure not going to give up and just take it lying down.
  12. Vash01

    Vash01 Well-Known Member

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    It was only a chance, not a certainty. Angelina made an individual decision for herself, depending on how she felt about it, and she has the right to. It's hard to say what I would have done if I were in her shoes, but my preference is always to use surgery as the last resort. My concern is that women that don't need it will rush into it just because a celebrity did it.

    I am sure removing one's breasts will make some feel fearless for sometime. What about the next disease and the next and the next?

    I watched an interview of another woman (can't remember her name- today I have been particularly bad about remembering names) on CNN tonight. She already had breast cancer in the initial phase, so that was a completely different situation. It was reasonable for her to consider the double mastectomy (instead of a single one, although I am sure her doctor will advise her of the options available to her), but she was talking as if Angelina had inspired her to do that (I am paraphrasing). If she has breast cancer, she needs to do what her doctor advises her, not what Angelina writes in an article about her own experience. Every situation is different, and I am afraid this could create some gross generalizations and some unnecessary surgeries.
  13. Japanfan

    Japanfan Well-Known Member

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    I think there is strong evidence suggesting that the weightlifting will in fact help - genetic tendency doesn't have to be a certainty. Plus, the benefits of exercise in general are well documented - and have a huge impact on older people's well-being.
  14. Anita18

    Anita18 Well-Known Member

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    IMO a nearly 90% chance isn't really a "chance" anymore. I'm an annoyingly persistent optimist, but I don't buy lotto tickets. :lol:

    Of course one shouldn't just go around removing livers and lungs and pancreases and brains if they find they have a chance of getting cancer in those areas. But you can live without breast tissue, so I think the fear of that kind of escalation is unfounded.
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  15. VIETgrlTerifa

    VIETgrlTerifa Well-Known Member

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    I don't understand the logic behind the idea that just because one makes a decision to significantly reduce the risk of a specific kind of cancer (90% chance is an extreme likelihood) is somehow a bad decision just because there's a chance she can get another form of cancer. Breast cancer, and maybe ovarian cancer, are two types of cancer that Jolie was in danger of getting had she not taken preventive measures.

    Criticizing her decision for taking these steps just because getting a double mastectomy won't reduce the risk of her getting leukemia or lung cancer, developing other sorts of diseases, or getting hit by a bus tomorrow makes no logical sense what-so-ever. It's like criticizing someone for getting treated for heart disease when they are at a high risk because that doesn't prevent one from getting pneumonia.

    Obviously, people might look into mastectomies more because the social stigma of not having breasts might be lessened with a celebrity making it more ok for it being option, but the idea of removing one's breasts is still a huge deal, and I doubt most doctors and patients will look into this procedure lightly, unless the doctors want to expose themselves to serious malpratice suits.

    Also, Vash01, the article you linked to did not talk specifically to Jolie's case which is that she had a mutated gene that would have most likely led to her developing cancer. The article was written to talk about how women need to be more informed before they made a life-altering decision. The woman the doctor talked about who decided to not get the mastectomy did not have the same mutated gene Jolie had, so their situations are not comparable. The only reason why people are jumping on your comments is because you had pre-judged Jolie's decision without fully understanding what her situation was and you were minimizing the fact that she had a 90% chance of developing the cancer. You then mentioned how it was a bad decision or "unwise" only because she could develop something else. True, she could, but we're dealing with probabilities here, and she decided to get treatment for something that was probably going to happen to her due to her mutated gene and her family history.

    I understand the article was written to make sure women do not prematurely decide to get the procedure done without knowing all of the facts about their condition and consulting health experts in the field, but I find it "overzealous" to think that just because Angelina Jolie did it, it means women everywhere are going to decide to get rid of their breasts if they do not suffer the same condition Jolie suffered from. It's fear-mongering, and it's unfair to women who will hesitate to get mastectomies because they are afraid of "cutting up their bodies" or getting rid of their breasts because society still thinks women should hold on to them for as long as possible due to beauty or feminine aesthetics or social pressures despite what is really best for their health.
    Last edited: May 15, 2013
  16. Zemgirl

    Zemgirl Well-Known Member

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    As Anita has pointed out, a nearly 90% risk of developing what would likely be a very aggressive form of breast cancer was not an acceptable risk to Jolie, and clearly her doctors felt that this decision was medically sound. Did the woman on CNN have a relatively treatable form of breast cancer? Did she have the genetic mutation that Jolie has? It's not just the risk of getting cancer but what sort of cancer one is at risk of; obviously some are more aggressive and less treatable than others.

    Women who get mastectomies do so because it significantly cuts the risk of breast cancer diagnosis/recurrence. Though hardly the same thing, people also have precancerous moles and problematic skin removed rather than risk melanoma and other forms of skin cancer, or undergo other procedures to reduce their risk of getting cancer. Nobody does it to feel fearless; people who are at high risk for specific cancers - whether due to age, genetic reasons, or because they've had it before - often have to undergo more testing and at an earlier age than the regular population, which is hardly conducive to a feeling of fearlessness.

    It's possible to live without breasts, so those at high risk for breast cancer can take preventive measures - an option that doesn't always exist for people who have high risk of other forms of cancer or illness. Nonetheless, I highly doubt that women will be moved to have unnecessary mastectomies simply because a famous woman had a medically indicated one. More likely it will make women aware of the possibility of genetic tests, and if that's the case, maybe more women will be able to make informed decisions. And if women whose odds of getting cancer are substantially reduced by having a mastectomy see Jolie as a positive example, well, why is that a bad thing? Better to lose your breasts than your life.

    I really don't understand why you are so insistent that Jolie should have taken her chances - and poor chances at that. Why should she play the odds with her own health, risking the high likelihood of getting a type of cancer that may not be treatable?
  17. snoopy

    snoopy Team St. Petersburg

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    It's not about the decision being "less" exactly, but i find it mitigates the bravery accolades. hell, i would have the reconstruction too but After having a couple of kids, her breasts probably look better now than before. So while I find her choice admirable, I still think she is an incredibly blessed individual, who lost almost nothing with this decision and gained alot. her life will be just as fabulous as ever. I realize this is not exactly a socially acceptable position but there it is.
  18. antmanb

    antmanb Well-Known Member

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    I am totally flabbergasted that anyone could think this about someone having a double mastectomoy and reconstructive surgery.
  19. cruisin

    cruisin Well-Known Member

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    I know someone who has the gene, a neighbor. Both her mother and sister died from breast cancer. My neighbor decided to have the double mastectomy (she did not have cancer - yet), this was 15 years ago. It was not as common back then. She got a lot of flack for doing something so radical. She asked me what I thought. My first answer was that it was none of my business. My second was a question: What was her level of anxiety about getting breast cancer and dying? Her answer was - extreme. To the point that it was interfering with her ability to have a normal life. My reply: then you absolutely did the right thing. Psychological pain/anxiety/worry can compromise the quality of your life. If the surgery can restore your quality of life, and that of your family's - you do what you have to do. I think my neighbor knew she did the right thing, but needed validation from someone other than a loved one.

    My SIL had breast cancer. A small, noninvasive lump. They did a lumpectomy. Two years later, she had cancer in the other breast, a different kind. Though there was no lymph node involvement, she had for a double mastectomy. She also had chemo, radiation, and a hysterectomy. She did everything she could to prevent it from coming back. It was hard time, in her life (and her family's) but she did the right thing. Her sister had breast cancer a few years later. Noninvasive, opted for the lumpectomy. I had hoped, that in light of her sister's recurrence, she would opt for the mastectomy. Neither of them have markers. If I had to make the choice, I would opt for the mastectomy. I would not want to take any chances.
  20. Angelskates

    Angelskates Active Member

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    Me, too.
  21. snoopy

    snoopy Team St. Petersburg

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    If the benchmark is completely healthy, then no gain. But I am using the benchmark of starting with an 80% chance of getting breast cancer. So the gain is an almost elimination of the risk of getting breast cancer and avoiding the chemo, etc. which other posters have pointed out would be harder than the surgeries. That is a huge gain. And these surgeries - resulted in loss of sensation to be sure - but no loss in appearance (per Brad). So starting from an 80% change of getting breast cancer, yes, this was a net gain for Angelina IMO. And I have had breast surgery so I am not completely unaware of the issues.
  22. michiruwater

    michiruwater Well-Known Member

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    Of course it is the right decision and she will gain from it. That's the whole point. But that doesn't mean that, even with her noted bravery, she hasn't had a whole host of anxieties, insecurities, etc., as well as the pain one would expect, etc. You statement came across very callously, and even if they look exactly the same, or even better, that doesn't necessarily make it easy to literally lose a part of yourself. Having reconstructive surgery certainly does not make her decision to have the surgery and to write about it in this way less brave - especially considering that choosing not to have reconstructive surgery would have quite possibly severely damaged her chances of obtaining future roles in a career she obviously loves.
  23. antmanb

    antmanb Well-Known Member

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    The reason I'm flabbergasted is not tyhe assertion that there is a lots to gain - of course there is, but rather with your assertion that she had virtually no loss. And I'm still flabbergasted that you think having both breasts removed is no loss :confused:
  24. Karina1974

    Karina1974 Well-Known Member

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    One of the members of my college graduating class (and former dorm RA) passed away from breast cancer last year at the age of 34. I wonder what she would have to say about your crass comment. Likewise my cousin and my boss at work, both are breast cancer survivors.
  25. Andora

    Andora Well-Known Member

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    I agree. I think a few people I know who've minimized her experience because she had reconstructive surgery seem to assume the new breasts are interchangeable with Angelina's now removed breasts. Imho, they aren't-- she lost a part of her and replaced it with something that is effectively alien to her body, even if it serves a solid purpose. But it's still a loss.

    This is a good point. For women who know their risk is high, I imagine it's as if you're a walking time cancer-bomb. I can't imagine what that must feel like. So for Vash to tell someone that experiences this, "well, just be hyper vigilant" when it's already a tremendous anxiety just seems coarse.

    My initial reaction was wondering if it was a bit exteme. I didn't know you could so drastically minimize your risk instead of just waiting for it to happen while trying to maintain good health in general. I personally learned something very important from this.
  26. Badams

    Badams Well-Known Member

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    I can't really believe the way this thread has gone. It isn't like Angelina Jolie is telling all women to have double mastectomies. She's advocating for women to take control of their health, and for things like gene testing etc...to me more affordable and readily available, so women can make INFORMED DECISIONS about their health. A double mastectomy was HER informed decision, she's isn't advocating that it's the ONLY decision.
  27. Louis

    Louis Tinami 2012

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    I applaud Angelina Jolie.

    I also think it's very fortunate that there are specific actions she can take to mitigate her risk.

    I also lost a parent to cancer (melanoma) in their early 50s. I have decent odds of a genetic mutation that puts me at the same risk, particularly since I've already had two pre-cancerous spots removed. Problem is, there's not a whole lot I can do differently if the test turns out to be positive. And if god forbid I lost my job, I am not sure I could get private health insurance if my medical records expose me as "ticking time bomb." (My understanding is that the GINA only protects you if you're in an employer-sponsored plan, but I could be wrong -- I'm not up to date on this because I've honestly been procrastinating and trying not to think about this for the past three years.) The regulations also don't cover things like life, long-term care, and disability insurance. I'm not unsympathetic to the insurance industry -- they need to make their profit, after all, and they shouldn't have to give me the same rates if I'm a known risk -- but there is some strategic benefit to not knowing since they can't require the test.

    I'm in a conundrum and procrastinating. Would appreciate any advice from anyone who has gone through a similar decision-making process, either here or via PM.
  28. Zemgirl

    Zemgirl Well-Known Member

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    I'm sorry that you had to go through such a difficult experience and empathize with your dilemma now. My take on it is that testing is worth doing if the results will allow to take proactive steps to lessen your risk of either getting cancer or receiving a late diagnosis - e.g. what Jolie did, or if you're at risk for certain cancers you could get ultrasounds or other tests that you might not be referred to without the testing. If there is no such advantage in getting the testing, it leaves you in a problematic situation in terms of insurance, and only gives you things to worry about - well, in that case I think you are better off not doing it at the time being, but of course you should still do regular screenings and checkups and follow your doctor's advice.
  29. OliviaPug

    OliviaPug Well-Known Member

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    Me three.

    O-
  30. Cheylana

    Cheylana Well-Known Member

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    As someone who went through a bilateral mast and recon in June of 2008 (on the cusp of five years cancer-free, yeah!) I can assure you there absolutely is a change not only in sensation (lose virtually all) but also appearance (lose the natural "hang") and feeling (not even in the ballpark of softness as natural breast tissue, no jiggle whatsoever). And I had a very successful reconstruction, my oncologist claims its one of the best she's seen (though I always tease that she probably says that to all her patients). Plus AJ had nipple soaring but the nips most likely won't really respond in romantic settings anymore. Then there are the weird phantom electro-shock-like sensations and itching deep within that can't be scratched. Plus the implant is placed over the chest muscle, so when you flex your chest muscle the implant actually scrunches up. You also have to limit your weight training so as not to distort the implant. And the implants have to be replaced every ten years or so for the rest of your life. Thats guaranteed surgery every decade or so. Don't let anyone kid you on the physical and emotional impact of going under the knife. There is also the risk of infection, implant failure, etc. Kudos to Angelina for putting it all in perspective but an implant is definitely not a perfect replacement.

    Still worth it to reduce lifetime risk of bc from 87% to 5%? Sure. But definitely no small thing.
    AJ Skatefan, mag, OliviaPug and 5 others like this.
  31. skatesindreams

    skatesindreams Well-Known Member

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    ^^^
    Add me to the list of people confused by Vash's post..

    Both procedures are major surgery.

    Earlier today AJ announced that she would have her ovaries removed, as well.
    She delayed it because the reconstructive surgery was the most complex of the procedures.
  32. IceAlisa

    IceAlisa Port de bras!!!

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    I've been wondering about that since her mother died of ovarian cancer, not breast. That means hormone replacement. Speedy recovery.
  33. michiruwater

    michiruwater Well-Known Member

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    The higher risk was for breast cancer, which is probably why she went that route first. Either way, it all sounds very hellish, and I wish her the best.
  34. IceAlisa

    IceAlisa Port de bras!!!

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    Well, it's a difference of a few months and is insignificant. Surgical menopause, OTOH, is no fun.
  35. Anita18

    Anita18 Well-Known Member

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    Rock on to everyone who's survived cancer! :respec:

    Also, not sure if this has occurred to anyone else, but mammograms use radiation. :shuffle: A very small amount compared to chest X-rays, to be sure, but when you're already at nearly 90% chance of getting cancer, it certainly doesn't help. That's why some doctors/scientists suggest women with no risks get mammograms later in life, and less frequently. Frequent screenings can do more harm than good in people who have a normal/low chance to begin with. It's a damned if you do, damned if you don't. Can't get everything.

    One of my friends is in the same conundrum. She's already had melanoma that spread to her ovaries, and fought it successfully. :respec: Every so often, she needs another precancerous mole removed. You're right that there's not a whole lot you can do about melanoma prevention (aside from slathering on that sunscreen and staying inside!), so as long as you are vigilant about moles, I honestly don't think it makes a difference in whether you get tested or not. Especially if it might show up on and affect your insurance.

    Aforementioned friend is in a bind, not ever being financially stable even in her mid-30s, and has consistently chosen life paths/jobs that would guarantee her health insurance. It's the only thing that's keeping her going - she can't lose her health insurance. It's not a fun situation to be trapped in. :(
  36. BigB08822

    BigB08822 Well-Known Member

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    It's called "slippery slope" and is indeed a logical fallacy.
  37. cruisin

    cruisin Well-Known Member

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    Louis, I know someone with Lynch Syndrome. Colon cancer at 22. She does have pretty good insurance coverage, and they cover all of the treatments an tests. She needs colonoscopies every 4 months, uterine biopsies every 6 months, and a few more, they fought it, but cover it.
  38. leesaleesa

    leesaleesa New Member

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    Large groups which are or used to be 50+ employees waive the pre-ex clause. Pre-ex is two years, meaning that the pre existing condition is not covered for that time frame, but other coverages apply. If you work for a small group and god forbid get a positive diagnosis, you are out of the pre-ex window if it's been two years, of course. If you were to lose your job and are in treatment, Cobra has to cover you. That theoretically should give you enough of a window to get a clean bill of health, and worst case scenario, you would have to go through 2 years of pre-ex should you obtain employment with a small group again. Please don't put this off, where there's a will, there is a way.

    I know a few people with health problems who work for major corporations doing phone sales in call centers. The work is difficult, but it can pay well, the benefits are great, and it's fairly easy to get hired. No pre ex. It's not a perfect solution, but if you were to find yourself in a bind job wise, it is a way to be able to obtain good and affordable coverage.
  39. Japanfan

    Japanfan Well-Known Member

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    Maybe Snoopy was comparing Jolie to non-wealthy celebrities when she said 'lost almost nothing'. It is true that Jolie lost her breasts, which is a whole lot of something, and had to endure the ordeal of going through the surgery and recovering from it, which would the case for any woman.

    But the cost to an average woman would be a lot more in terms of time, dollars, and possibly stress. Jolie doesn't have to worry about income lost due to the cost of the surgeries; about having to take time off from work and the associated loss of income and possible job loss, and; and about getting someone to take care of her children and household while she recovers.
  40. LilJen

    LilJen Well-Known Member

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    My sister had DCIS the first time at 45 (lumpectomy & radiation--NOT a fun spring/summer for her). The next year, she got it again, in spite of the radiation. She wasn't eligible for more radiation, and ineligible for chemo. She opted for a double mastectomy, no reconstruction for the reasons many folks have detailed (painful, expensive, repeated surgeries needed). She didn't want to spend the rest of her life worrying. She'd also gone through puberty early and had my nephew after age 35, two other risk factors not in her favor. (She opted against spending $3K for testing.)
    Reconstruction is often very painful and time consuming. It usually means repeated procedures, a great chance of complications, and replacing those implants down the road, several times.

    THIS. Genetic testing isn't covered, but mammograms are. Even with that--it's a struggle for anyone under a certain income level to get a mammogram at all, given time off work, scheduling around multiple jobs & kids' & spouses' schedules, not to mention transportation. It shouldn't be this way, but it is.