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Angeline Jolie just became an even more interesting person

Wow. Jolie is a beautiful woman who makes a living as an actress, where looks can be important, and she discovered that she carried an allele of BRCA1 that puts her at a very high risk of coming down with breast cancer sometime in her life. She looked at her situation rationally — she is an atheist after all — and made the decision to get a preventive double mastectomy. She chose to maximize her chances of living a long life over preserving a secondary sexual characteristics.

That’s strong and smart. She hasn’t lost anything of any importance.

Jolie also took an important next step and came forward with the news to encourage other women to make good choices.

I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.

Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

The only glitch in this story is that this is America: if you’re not a mega-millionaire movie star, you’re not likely to be able to afford the expensive genetic testing, or the extensive surgeries. But maybe Jolie’s openness will encourage politicians to correct that, too.

Comments

  1. Ben P says

    Although slightly off topic, I would bet her physician advised her looks wouldn’t be much of a problem. Modern implants done by a professional* plastic surgeon are very well done. A woman I work with had this done last year (she actually had cancer though) and there’s virtually no difference.

    * – This is not to say the people who have medical practices where they almost exclusively take cash patients for “enhancement” are unprofessional, but the common perception, even in the medical community, is that the plastic surgeons who primarily do reconstructive work are better.

  2. thumper1990 says

    The only glitch in this story is that this is America: if you’re not a mega-millionaire movie star, you’re not likely to be able to afford the expensive genetic testing, or the extensive surgeries.

    She highlights that problem in the article. I already had a lot of respect for her due to her humanitarian work, but it has just increased as a result of her sharing this story. I was also unaware of her Athiesm.

  3. says

    Here in Australia, I just went to my family doctor a few days ago and asked him for a referral to the Genetic Oncology program at our local teaching hospital in Sydney. I asked because my mother just died of breast cancer, and her sister and her mother had previously died of breast cancer. I am fully prepared to have a double mastectomy if my tests come back with evidence of any carcinomic-associated alleles.

    Because we have “socialised medicine” here, my visit to my family doctor was bulk-billed so that I paid nothing for my visit – my GP will be reimbursed by the government MediCare program. When I get my genetic testing done, a large component of that cost will also be borne by MediCare, the rest will be covered by my private single-payer medical insurance which has absolutely no link to my employment, and my out-of-pocket expenses are likely to come in at under $200 for the testing.

    My surgery, should the results push me to decide that I need it, will also be mostly covered by a combination of MediCare and my private health insurance. Since I, unlike Jolie, will probably not bother with reconstructive cosmetic surgery afterwards (since my career does not depend upon my conformance to the Hollywood beauty standard), I’d likely only be out-of-pocket a few thousand dollars for that as well.

    I realise that I’m personally fortunate to find projected costs of between $2-4000 something that our family budget can easily handle because of our educated middle-class socioeconomic privileges, but the fact that I’m politically fortunate enough to have my costs be so limited in the first place is due to the combination of how our public and private health systems are organised, which is due to the collective wisdom of previous generations regarding the social-democratic contract.

    The USA’s ludicrous approach to health services is the main reason why I would never live in the States for any lengthy period, although I’d love to travel there for extended trips sometime.

  4. kemist, Dark Lord of the Sith says

    I’ll work on a simulation to determine how to best preselect patients here in Canada for nation-wide genetic testing for breast cancer this summer.

    We expect it will be implemented in the next few years.

  5. clydey2times says

    While I applaud Angeline Jolie’s courage, it is absurd for PZ to claim that breasts are of no importance.

  6. says

    Just as well he didn’t claim that then.

    What exactly “of importance” do you think Jolie has lost following her mastectomies and reconstructive surgeries?

  7. kemist, Dark Lord of the Sith says

    The only glitch in this story is that this is America: if you’re not a mega-millionaire movie star, you’re not likely to be able to afford the expensive genetic testing, or the extensive surgeries.

    Well, genetic testing is becoming a lot cheaper. My boss had his complete genome sequenced for about 500$, and it is now offered below that price.

    It’s a bit panicking for our healthcare system, because there is an increasing number of people who have this done on their own and want to consult with an MD-geneticist to make sense ofthe results… And we have only one MD-geneticist in Quebec. He has 8000 patients*, mostly expecting mother with high-risk pregnancies.

    But yeah, the surgeries are very expensive, especially in the US. Perhaps it will soon be offered in India, like cardiac and orthopedic surgeries.

    * If any MD students here are looking for careers, there is sure to be a huge demand, very soon, for genetic consultants.

  8. Larry says

    kemist @ #8: Hopefully, your National Research Council will consider this research to have social or economic gain and provide the funds. Its head, a John McDougal has the opinion that science is good only when it has economic value.

  9. Marcus Hill (dripping with unearned privilege) says

    Here in the UK, for someone with significant family history of breast cancer those tests and procedures would be available at the crippling price of £0.00 to the woman involved. My taxes pay for it, and I’m glad that they do.

  10. snodorum says

    clydey2times @ #9: I understand your sentiment. I know it is common for women who have undergone the procedure to feel “less feminine”. Their breasts are something that defined their image, so it is scary and difficult to have them removed. I think PZ is suggesting that when they are likely to be cancerous, breasts are ultimately of no importance. Most of their importance is superficial and culturally-defined.

    That’s my take on it, at least. It’s great that she made it public! Hopefully it raises awareness and makes it easier for women who are going through a similar situation.

  11. kemist, Dark Lord of the Sith says

    @ Larry

    Oh, the funds are already allocated (actually my boss has the interesting problem of having “too much money”). Our lab, fortunately, has never had any problem getting funded, as it is a bit unique in the kind of work it does*. Considering the fact that we do have a public healthcare system, the work we do does have economic and social value, though perhaps not from an industrial point of view. I doubt so much funding would be available to it in the US.

    It often contracts directly with healthcare agencies for advice concerning public health programs such as flu vaccination, osteoporosis prevention, ect. We simulate and present the results to them first; publications are often secondary, and more linked to demonstrating new functionalities in our simulator than to our results.

    * It is also unique in the variety of the people working here. We have MDs, anthropologists, sociologists, geneticists, and computer engineers. I’m the latter.

    ** Also, I hate the conservatives and their backwards approach to science. They’re one of the reasons I left my previous field of study (medicinal chemistry).

  12. says

    Two thoughts on this:
    First – damn good thing she didn’t try to pray the potential cancer away; and
    Two – damn good thing she has the resources to get the genetic testing needed to find the dangerous genetic defect, and that those resources allowed her the flexibility to get the surgery now.

    Thoughts #3&4 – wishes for her continued good health, and thanks for her sharing.

  13. thumper1990 says

    @Ibis3

    Fair point, well made. It sounds like he was very supportive. Props to him too.

  14. clydey2times says

    @tigtog

    It’s not what I consider important. It is what many women feel is important. Whether or not that importance is culturally defined is, frankly, irrelevant.

    You might not like it, but breasts are generally a large part of a woman’s identity. To say that someone who has undergone a double mastectomy has “not lost anything of importance” is to undermine the psychological impact of that choice.

    And in the case of Angelina Jolie, it completely undermines how brave her choice was.

  15. says

    While I applaud Angeline Jolie’s courage, it is absurd for PZ to claim that breasts are of no importance.

    I’d say he was talking about importance when compared to not getting cancer.

  16. iiandyiiii says

    I think I understand PZ’s point about losing nothing of any importance, but from what I understand such surgery can result in considerable loss of sensation, which while obviously unimportant in comparison to the prospect of cancer, might still be somewhat important to her, aside from any concerns about appearance.

  17. says

    When I read about this yesterday the first comment to the article was some knuckle-dragging, drooling imbecile saying RIP to her breasts. I’m sorry to see that some of the same ilk crawled out from the ooze to comment here also.

  18. clydey2times says

    @vexorian

    Most things are unimportant relative to cancer. That doesn’t mean they are unimportant.

    I sometimes think that PZ tries so hard to project the image of an enlightened straight white male that he occasionally makes some absurd statements.

  19. Amphiox says

    Hmm. Seeing a bunch of men arguing over the appropriateness of PZ’s use of the word “importance” with respect to how women may or may not view an aspect of their anatomy is just a tad disconcerting. I apologize in advance if any of you who I’ve assumed to be male based on your ‘nym actually aren’t.

  20. clydey2times says

    @Amphiox

    Do you find it similarly disconcerting that a man has decided that a woman’s breasts are unimportant, despite the psychological evidence to the contrary?

  21. says

    Christina Applegate carries the same gene, and was diagnosed with breast cancer in 2008. Although only one breast showed signs of cancer, and the cancer had been detected relatively early, she decided to have a double mastectomy. Her mother, singer and actress Nancy Priddy, is also a breast cancer survivor.

  22. clydey2times says

    On a note unrelated to my other contributions, I am curious as to how many of you would choose to undergo a similar genetic test?

    I find the prospect terrifying. While watching a short documentary on fatal familial insomnia, the potential impact of taking such a test really hit home. In some cases, you could be finding out with some degree of certainty that you won’t live into old age.

  23. says

    I would basically get all my genes tested if I had the money. So it is probably a good thing that I don’t.

    It is scary, but I guess it is worse when disease strikes you unprepared.

    @vexorian

    Most things are unimportant relative to cancer. That doesn’t mean they are unimportant.

    I am just saying’ I don’t think anyone here has actually said that they are unimportant in general.

  24. clydey2times says

    I suppose it depends on what you might be susceptible to. If the disease is preventable, that’s one thing. If you find out that ALS is potentially in your future, you may be living with that fear for the rest of your life.

    I’m a pessimist by nature, so I doubt I would go down that route.

  25. gussnarp says

    So I noticed that Angelina Jolie said the cost of testing for BRCA1 and BRCA2 was $3,000. Meanwhile, there’s an ad on this page for 23 and Me who way they test for BRCA1 and BRCA2 and their test is $99.00.

    Now from Oh No, Ross and Carrie! I know that 23 and me tests only for a couple of potential mutations of those genes that commonly cause breast cancer in women with Ashkenazi Jewish ancestry, but may not be useful to test for in women without that ancestry.

    So it seems some clarification is in order here. My understanding from all this is that BRCA1 and BRCA2 are the genes, and that there are a number of mutations of those genes that can make one significantly more likely to get breast cancer. If that’s correct, then are there more mutations that can be identified than the ones 23 and Me tests for? Does Angelina have one of those mutations? And are the only tests available for the mutation she has $3,000 or more? And are those mutations more or less common among humans in general than the mutations commonly found in Ashkenazi Jews?

    Because if we can identify these for $99, then we ought to make this test a standard, insurance covered medical procedure. If we can’t, then we’ve got to get to work.

  26. gussnarp says

    If cost was no object, I’d certainly undergo testing. Even if the test revealed something like a high risk of Alzheimer’s, at least I would know and could plan accordingly. I’m also pretty well educated on probability and statistics, so I can get my head around what the numbers actually mean and am unlikely to be frightened by numbers that aren’t as significant as they appear. But mainly, because I am infinitely curious.

  27. says

    I see that since the patriarchy has decided that it’s important for women have breasts that men can oogle, that people are going to try and utilize that as a Gotcha.
    Concern troll is concerned.

  28. liz321 says

    clydey has a point.

    I am a breast cancer survivor. I have had a single mastectomy with no reconstruction. Breasts are important, not just because they are part of female identity, but because they are working parts of your body as a woman and also important erogenous zones involved with your sex life.

    For those who don’t know or haven’t thought about it, when a mastectomy is preformed you lose all sensation, even if you have what seems like “realistic” reconstruction. Reconstructed breasts may look good, but they can’t replace a real breast. They are simply bags of silicone under skin that has lost sensation from all of the nerves being cut out and removed as part of the breast.

    There are reconstructions which can use muscle and tissue and from other parts of the body to from a breast, but even those are desensitized areas and some at the cost of weakening muscle from the donor site.

    It is a big deal. It is important.

    Having breasts isn’t only about looking a certain way.

  29. garnetstar says

    In the article, Jolie specifically states “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity. ”

    So no, she did not lose anything of importance. Please do not assume that your possible feelings are shared by everyone.

  30. clydey2times says

    @liz321

    Sorry to hear that you had to go through that. I should have probably pointed out some of the issues you highlighted, over and above the potential psychological impact.

    Obviously the notion of the female identity is a social construct, but that doesn’t make the impact of this procedure any less real.

  31. clydey2times says

    @garnetstar

    PZ did not make his claim with reference to that quote. He made a general statement about the importance of breasts.

  32. liz321 says

    garnetstar…I felt the same way when I initially lost my breast. No big deal.

    Some losses you don’t feel until later and with the passage of time. Sometimes you only see the immediate loss of fear at getting rid of something that is threatening your life. AS time passes you become more acutely aware of what’s gone….not that you would change your choices….but that you realize that it kind of was a big deal in some ways.

    And as somehow who has more firsthand knowledge, not only personally but with many other women who have actually gone through the same thing, I don’t think I need to be lectured about pointing it out.

  33. Beatrice (looking for a happy thought) says

    liz321,

    Thanks for sharing that.


    garnetstar

    So no, she did not lose anything of importance. Please do not assume that your possible feelings are shared by everyone.

    How about we acknowledge that on some sensitive topics, it’s better to avoid statements that can be read as having specific and general meaning, so as not to impose another set of judgement onto people (because being told losing your breasts makes you less of a woman isn’t enough, someone also has to tell you you are silly for getting upset about losing your breasts – women never win!).

  34. Roberto Aguirre Maturana says

    I don’t get it. If she hasn’t lost anything of any importance, why is this news?

    If what you say is true, and breasts aren’t anything of any importance, then every rational woman should take the decision of getting a preventive double mastectomy, forget genetics. That would save millions of lives.

  35. says

    @ gussnarp @32:
    Are those the same test? i.e. what does the low-cost version actually provide? With genetic screenings, the important thing to just have the sequence of the relevant gene, but to understand what that means in terms of implications for future health. Does 23 And Me’s staff have the relevant expertise and provide that to you for the same low cost? Or is it “You have this sequence. It’s odd. Talk to a specialist.” ?
    -
    @clydey2times @29:
    My reasoning is that provided you know what to do with the knowledge, it is better to have information than to not have it. Being male, I don’t have the same risk of breast cancer as a woman would (although I am acutely conscious that that risk is not zero), but thanks to family history I know I should be getting prostate cancer screenings at intervals starting in about 15 years – yes, those aren’t genetic screens.
    _
    And there is a slowly-growing list of things people who are planning on having kids should be screened for, to see if they are carriers – it depends on cohort and the list grows as the costs of the screening tests come down (right now, it’s things like being a carrier for cystic fibrosis or Tay-Sachs).
    _
    Like PZ said, we really should make a lot of genetic screenings available to everyone who would benefit from having them done.

  36. kemist, Dark Lord of the Sith says

    If what you say is true, and breasts aren’t anything of any importance, then every rational woman should take the decision of getting a preventive double mastectomy, forget genetics. That would save millions of lives.

    Not really.

    It is a major surgery, with its associated risks of complications.

    A rational approach would be to assess your risks vs your benefits. For someone having a high lifetime risk of BC, it might be worth it, for someone who does not, not so much.

  37. Gregory Greenwood says

    While I never cared for Angelina Jolie as an actress, I have developed a great respect for her as an activist over the last few years. That she is determined to try to help other people even while undergoing such a traumatic event in her life as this only increases that respect.

    I doff my headgear in her general direction.

  38. terryg says

    liz321: thank you for sharing that.

    wow. well done angelia jolie, thats fantastic.

    Ruth had a double mastectomy a few days after finding a lump in one breast – despite the surgeons recommendation. it took a good half-hour of arguing to get what she wanted, but it turned out to be the correct course. Christina Applegate was one of Ruths heroes, and she would have added Ms Jolie to the list. Alas she only survived a further 39 months, but thats 3 years longer than expected.

    Ruth was deeply affected by the loss of her breasts, but opted against reconstruction – the prognosis was dreadful, and Ruth wanted to avoid the extra pain. it took almost 3 years before she was comfortable being in public without her “boobs” – even though it hurt to wear the prostheses.

    and next week it will be 8 months since she died. bah fucking humbug, and fuck cancer. found out today her sclerae have just been used on a man in his 70s and a woman in her 50s, so thats 4 peoples sight restored. well done Ruthie..

  39. dianne says

    The only glitch in this story is that this is America: if you’re not a mega-millionaire movie star, you’re not likely to be able to afford the expensive genetic testing, or the extensive surgeries.

    A high school friend of mine who has unfortunately experienced breast cancer and is now living with ovarian cancer is a BRCA mutant. She got her sequencing and surgery done and is getting expensive chemotherapy despite not being a millionaire. (Albeit she is a wealthy white woman.) I agree that the cost should be zero, but there’s no reason for women who think that they should be tested to despair of the possibility of being tested due to finances. Certainly not without looking into the issue.

    Incidentally, BRCA mutations are associated with a number of cancers (depending on the mutation). I hope Ms. Jolie keeps up with surveillance and doesn’t assume that she’s perfectly safe now that she’s had the mastectomy.

    On a lighter note, my friend has a t-shirt that says, “Of course they’re fake. The real ones tried to kill me!” Maybe Ms. Jolie needs one too to deflect the snide jokes she will inevitably encounter.

  40. stevem says

    re kemist @45:

    It is a major surgery, with its associated risks of complications.{emphasis added -sbm}

    You beat me to it. I was about to say the very same, then I saw your comment. In addition to all the emotional attachment one has to a body part (whichever part is under consideration), don’t overlook the fact there is a huge risk associated with removing it. One must always weigh the risk of the surgery vs the risk of contracting the disease you are hoping to prevent. No matter how obvious the choice, it is always a very difficult one. Back to Jolie, don’t just applaud her courage for “sacrificing” her breast, but include her bravery at facing the major surgery involved (to remove them, regardless of any future reconstructive surgery).
    Bravo, Ms. Jolie, bravo!

  41. says

    I’ve read recently that the number of double mastectomies in the US is higher than in Europe… But our rates of breast cancer and breast cancer (specifically) survival aren’t any better.

    I think it’s important she had that choice, but evidence may indicate that it didn’t improve her chances of survival.

  42. gussnarp says

    @michaelbusch – Part of 23 and Me’s low cost is definitely the lack of genetic counseling. They provide a bunch of material that you have to have at least some prior knowledge of biology and statistics to understand meaningfully, and a lot of patience to read through, and that’s about it.

    My understanding though is that the real cost savings is that there’s a lot they don’t test for, and that’s what I’m really curious about – is the mutation Jolie has one of the mutations they test for? There are some mutations that have been patented and 23 and Me couldn’t test for them if they wanted to.

  43. kemist, Dark Lord of the Sith says

    Ruth had a double mastectomy a few days after finding a lump in one breast – despite the surgeons recommendation. it took a good half-hour of arguing to get what she wanted, but it turned out to be the correct course.

    There are contradictory findings about that.

    A few years ago studies showed that radical mastectomy was not significantly better than tumorectomy for breast cancer. However, since most breast cancers happen post-menopause and are not of the familial type, this finding might not apply to people who have genetic risk factors and are younger than 50 at diagnosis.

    That’s why preventive bilateral mastectomy was a bit frowned upon a few years ago. However we now have data that suggests that it does reduce your lifetime risk by 90%. Adding oophorectomy dimishes risk by 95%.

    BRCA mutations also predisposes you to ovarian cancer, which is also quite deadly and typically detected at late stages. Since it is not as frequent as breast cancer, there are no systematic screening efforts for ovarian cancer that I know of. It would be interesting to have the same genetic data for ovarian cancer as for breast cancer to focus screening on women who are at high risk. I’d really like to see this done since I have a very dear friend who died from ovarian cancer about 2 years ago.

  44. fernando says

    “I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery.”

    I wish the the best for Angelina Jolie, but the afirmation above is very dangerous.
    She is puting at the same level witch doctors of real doctors, and this can be very dangerous, specially for fans of her, less informed, that can waste precious time going to an holistic witch doctor, instead of going the soon has possible to a real doctor.

  45. kp71 says

    The test apparently costs thousands of dollars. Being beyond the means of most women, I don’t think it’s worth it. Having the gene doesn’t mean you’ll get the cancer, just like having a little HPV DNA in your cells doesn’t mean you’ll get cervical cancer. Both cancers are beatable if found early enough, so keeping up with breast exams the same way you should be keeping up with PAP tests should be enough.

    For the record, my ex-gf had a tiny lump that probably would have been fine with just a lumpectomy. She opted for the double mastectomy too, and it was a good decision. Implants are much safer now and hers looked great, for relatively minor inconvenience.

    Also, for the record, my mom had a lumpectomy almost 20 years ago, kept her breasts and is still doing ok. She has other health problems, but the breast cancer has never come back. I repeat, breast cancer is beatable.

    But, yes, thumbs up to Angelina Jolie for taking a step (double mastectomy) that many women are afraid of for cosmetic reasons, but which is a good way to go in many (most?) cases. Especially for speaking out about it to defuse some of that fear.

  46. kemist, Dark Lord of the Sith says

    I’ve read recently that the number of double mastectomies in the US is higher than in Europe… But our rates of breast cancer and breast cancer (specifically) survival aren’t any better.

    I think it’s important she had that choice, but evidence may indicate that it didn’t improve her chances of survival.

    Depends.

    Current data seems to indicate that she did reduce her lifetime risk by about 90%, compared to women who also have a BRCA 1 mutation but did not undergo mastectomy.

    You have to distinguish between familial breast cancer, ie cancer that is linked to genetic mutations and is typically diagnosed in younger women, from the non-familial types, ie, diagnosed after 50, which constitute the majority of cases. Depending on populations familial types may constitute 20 to 30% of breast cancers. To compare death rates in one population vs another, you’d have to factor in the composition of these population relative to the mutations.

    You also have to distinguish between preventive mastectomies and post-diagnosis mastectomies. A double mastectomy after cancer has spread to lymph nodes does not increase your chances of survival according to the data we have.

  47. kemist, Dark Lord of the Sith says

    Both cancers are beatable if found early enough, so keeping up with breast exams the same way you should be keeping up with PAP tests should be enough.

    Unfortunately, no.

    Women who have the BRCA mutations typically are younger at diagnosis, and have more aggressive cancers.

    The sensitivity of mammography is excellent for women over 50, atrocious for younger women due to higher breast density. Self examination is atrocious sensitivity-wise for all age groups. When it does detect something, it is in most cases quite advanced.

  48. grumpypathdoc says

    The above didn’t go well. Methinks I have been attacked by the gremlins unleashed by Myriad Genetics for what I was about to comment on.

    Myriad owns the patent on testing for the BRCA1 and BRCA2 genes, a patent currently being challenged in the SCOTUS. They are the only lab that can perform such testing, which is why it costs $3,000.00 to perform the test. Which is why most insurers will not pay for said test. Thus the suit “Association for Molecular Pathology v. Myriad Genetics” currently before the Supreme Court.

  49. anchor says

    The only glitch in this story is that this is America: if you’re not a mega-millionaire movie star, you’re not likely to be able to afford the expensive genetic testing, or the extensive surgeries

    The other ‘glitch’ is that she will almost inevitably have to endure a backlash in an industry that places more weight on bodily form and appearance than intelligence and acting proclivity. Just watch what happens…

  50. Amphiox says

    re @27;

    There is no “similarly” about this. When I say “argue about” I include the original statement. It is all the same in both directions. PZ has often admitted that he has privilege, some of which he is aware, and so of which he is not. This is an example of just this phenomenon.

    Of course the point is mute now that liz321 and others have joined the conversation.

  51. ronster666 says

    My sister in law is having the exact same thing done as I type this. A small cancerous mass was discovered and she decided on a double mastectomy as opposed to taking her chances of recurrence and taking drugs for 5 years that have some possible undesireable side effects. I salute both women.

  52. dianne says

    Women with a germline BRCA mutation have a 50-85% chance of getting breast cancer in their lifetimes. And BRCA tumors tend to occur early and be aggressive. It’s reasonable for someone with reason for suspicion (i.e. strong family history) to get tested, though I doubt the test is needed as a screen for average risk women.

    Men with BRCA mutations can get breast cancer too and are at increased risk of prostate cancer and probably pancreatic cancer (at least for BRCA2.) Men should get tested as well if the clinical setting is appropriate (known mutation in mother or sister, strong family history especially of male breast cancer, etc.)

  53. Andy Groves says

    @dianne: Two very good friends of mine were both diagnosed with breast cancer in their mid 40s. The husband had helped his wife get through the treatment and surgery and was getting ready to celebrate her 5 year cancer-free milestone when he was diagnosed with breast cancer too. Although male breast cancer is far more rare, it can also be more deadly as men are less likely to get their lumps checked out in a timely way.

  54. dianne says

    @Andy Yes, it definitely is. I’d say that testing is warranted in pretty much any male breast cancer, BTW, because it is so rare.

  55. says

    Interesting conversation here, about women’s breasts. In all the dozens of comments about the “value” and “importance” of breasts, from men and women, no one seems to have mentioned the primary biological function of breasts, that is, as mammary glands, to feed babies. Given that the sort of cancer that Ms. Jolie is trying to avoid can strike younger women, then yes, indeed, the loss of one or both breasts can be, for a younger woman who desires to nurse her children, a devastating loss.
    .
    I’m a woman in my mid-50s. Nursing my only child twenty years ago was a profoundly rewarding life experience for me, and I still value my breasts as part of my whole woman-self. I clearly recall my sense of wonder and delight that my breasts, my body, could generate all the sustenance that my baby needed. I still feel a sort of affection for my breasts. (Huh, I hadn’t thought about that for a while.) If I needed a mastectomy, I would do it, but it would be a psychological as well as a physical loss.
    .
    I also appreciate the comments here that acknowledge that breast sensitivity can be an important part of sexual pleasure for all people, women and men. The loss of that relatively large area of pleasure-giving skin would be a great loss. And let’s admit it, breasts are beautiful. The loss of breasts would, I imagine, have a profound effect on the visual aspects of lovemaking.
    .
    Another thing about breasts, as evidenced by many of the comments posted above: The general public seems to assume a sort of public ownership of breasts, especially the breasts of celebrities. I suppose this is due in part to 1) our society’s fetish with breasts as markers of sexual attractiveness; 2) the fact that breasts are almost always visible, even when covered (unlike, say, a man’s penis, which is generally not noticeable in its flaccid state); and 3) the fact that because they vary in size and shape (like noses), breasts are subject to assessment and valuation (too small, too big, too this, too that). Exposed breasts are either good (e.g., when displayed by glamorous celebrities) or bad (e.g., when a politician shows any cleavage, or when a woman nurses her baby in public), never neutral.
    .
    It’s only because our society has such conflicted feelings about women’s breasts that Ms. Jolie’s announcement is at all meaningful. (I know, if she were having her gallbladder removed that would be news, too, but not at all to the same level of sometimes-prurient interest.)

  56. mildlymagnificent says

    I am curious as to how many of you would choose to undergo a similar genetic test?

    I did – but for a degenerative nerve condition, not a propensity to cancer. The reaction was strange. I absolutely knew that I had it given the very obvious deformity in my feet, the previous neurological testing and the weak muscles of my feet, legs and hands. But I was still upset when the result came back positive. All it really means is that I can do less and less in the future of the things I couldn’t do much of anyway.

    Don’t know whether I would have had it done if I’d had to pay for it.

  57. says

    The other ‘glitch’ is that she will almost inevitably have to endure a backlash in an industry that places more weight on bodily form and appearance than intelligence and acting proclivity. Just watch what happens…

    Hmm… the story I read indicated that she’d had reconstructive surgery virtually simultaneously (if not actually so; I don’t know how they do these things) with her mastectomies, and that she was very pleased with the results: She was quoted as saying that aside from a couple small scars, her husband and kids couldn’t tell the difference. So while she’s surely lost her breasts, with whatever psychological, emotional, and sexual costs (as others have commented on) that brings in her particular case, she doesn’t seem to have lost her “bodily form and appearance” at all.

    Besides, I’m not sure the industry is as unforgiving as you imagine: Christina Applegate is nowhere near the star Jolie is, but her fame, dating back to her Kelly Bundy days, is similarly based on her sexiness, and especially on her breasts… yet her career seems to have been slightly rejuvenated, rather than damaged, after her double mastectomy.

    And, of course, Jolie and Pitt are about as close to movie royalty as we have, and likely immune from the kind of “backlash” that might sink the careers of lesser stars,

    None of which lessens the courage and rationality of her choice, though.

  58. greg hilliard says

    Bill: I don’t know whether Jolie had the replacement surgery done at the same time, but my wife did in December 2010. She was lucky, if getting breast cancer can be called lucky, in that she did not have to undergo radiation or chemotherapy. The recovery took a few weeks in which I had to carefully drain the drainage bulbs, always holding the tube so as not to tug on my wife’s chest cavity, then draining the fluid into the bulb, then emptying the bulb. I told a medical assistant about this and said it seemed like something a traveling nurse would do. She said that she had been a traveling nurse and had done just that — until the insurance companies decided such a thing was too expensive.

  59. terryg says

    Kemist @ 54,

    diagnosed stage IV DCIS at age 43, 89 hot nodes in L armpit, 65mm L breast tumour. R breast had smaller lump determined to be tumour.

    the decision was based on a combination of the likelihood of the R breast having cancer (it was a big mass in the L breast) and Ruths unwillingness to go through the trauma of surgery itself. recovery time for the double mastectomy was not significantly longer than that for a single mastectomy, and Ruth chose to minimise total pain (as would I, but not my call). also minimises total cost.

    no reconstruction for the same reason – minimising pain.

    and sure enough, post-op the surgeon said the R breast test results meant they would have wanted to lop it off too, in a later op. or in other words, all his arguing was in vain, and served only to maximise both revenue and patient pain.

    we didn’t know enough at the time to force the oophorectomy, but in hindsight we should have. oops.

  60. fynn says

    “She hasn’t lost anything of any importance.”

    I have to admit, I find that extremely troubling. Breasts aren’t “of no importance”, they’re a part of the body, as much as hands or feet or elbows. I don’t think anything is gained by minimising the psychological distress of losing a part of yourself.

    And as has been already said, breasts are a major erogenous zone for many women. That’s not nothing.

  61. says

    Here in the UK, for someone with significant family history of breast cancer those tests and procedures would be available at the crippling price of £0.00 to the woman involved. My taxes pay for it, and I’m glad that they do.

    My mother, who lives in the UK, has just been through surgery for breast cancer. Fortunately she caught it early, and the hardest decision was whether to have a mastectomy or just have the lump removed, plus radiotherapy. The survival rates were no help in her case — they’re the same for both procedures. In the end, she opted to have only the lump removed and a three-week course of radiotherapy.

    All this was done, free at the point of delivery, by the National Health Service, even though she is now 81 years old, (what Death Panel?). She had excellent care all round. The only word of caution, if you live in the UK, is that they stop contacting you for breast cancer screenings at the age of 70. They will give you one if you ask, but you have to ask. My mother was fortunate that she found the cancer herself when it was still at stage one.

  62. mildlymagnificent says

    The only word of caution, if you live in the UK, is that they stop contacting you for breast cancer screenings at the age of 70.

    Ha! Same here until last week. Now, free screening is offered to women up to age 74.

    (I didn’t bother to follow up the report with the recommendation to do so. Here that sort of official review + recommendation is usually pretty well evidenced.)

  63. carlie says

    terryg, I remember you telling us about Ruth before. She sounded, then and now, like a wonderful woman, and I’m so sorry for what happened.

  64. kemist, Dark Lord of the Sith says

    terryg

    and sure enough, post-op the surgeon said the R breast test results meant they would have wanted to lop it off too, in a later op. or in other words, all his arguing was in vain, and served only to maximise both revenue and patient pain.

    :(

    That’s why healthcare shouldn’t be a for profit venture…

    we didn’t know enough at the time to force the oophorectomy, but in hindsight we should have. oops.

    Don’t berate yourself over this… Ovarian cancer is still not a very well known entity, and some treatment decisions for it seem very weird to me.

    For instance, when my friend was diagnosed, her doctor (a superspecialized gyneco-oncologist surgeon and researcher) insisted that she take premarin after bilateral oophorectomy. My lab had just begun working with a new ovarian cancer cell line that was ER+ and PR+ to see if our best compounds had any effect on it. I found it bizarre that HRT was systematically given to pre-menopausal ovarian cancer patients without any test to see if the tumor had receptors… I told so to my friend, and she asked to have a sample of her tumor (as grad students in a molecular oncology lab, we were fortunate to have access to facilities where we could do those tests ourselves). You should have seen the face of her doctor when she showed her the results – positive for both ER and PR. My friend was told to discontinue premarin immediately.

    I still do not know if receptor testing is now standard practice for ovarian tumors before premarin is prescribed.

  65. kasi1985 says

    @Liza321, thank you for sharing.

    @Terryg, I’m so sorry for your loss.

    My doctor recommended to me about 6 months ago to have the testing done. He said that if the results were positive that he did recommend prophylactic double mastectomy. I filed this away and it’s been sitting in the back of my mind ever since. After reading about what Angelina Jolie did yesterday, I’ve decided that I’m going to pursue it and have the testing done even though it very much scares me to know.

    My mother was diagnosed with breast cancer at age 36 and was dead at 42, leaving behind a 13, 14 and 22 year old (me). Now I am 28 with two young children and I really don’t feel that I can afford to wait.

    I spoke with a woman yesterday that has had it done, and she said it was $3300 but her insurance did cover it, and I’ll have to hope that mine will as well. It’s very encouraging to hear other people’s stories.

  66. lopsided says

    Gutsy as hell. Breast cancer terrifies me as does a mastectomy (and surgery for that matter). I really don’t think I’d be able to do this.

  67. birgerjohansson says

    Slightly off-topic: men can get breast cancer too. Only not as often (less tissue vulnerable to mutation?).

    I wish we men could do without the prostate gland as well as women do without breasts, unfortunately surgery leads to incontinence.