Angelina Jolie, Knowledge Is Not Enough

Started by Tonia, March 25, 2015
4 replies for this topic
Tonia

Member
558 Posts
Posted on
March 25, 2015
Two years ago, Angelina Jolie-Pitt told the world that she held the BRCA1 mutation; a deleterious gene mutation which significantly increases your chances of developing of breast cancer and ovarian cancer. Angelina’s maternal family history of cancer was the impetus for her to be genetically tested. Soon afterwards, she made the difficult choice to have a preventive double mastectomy. I applaud Angelina’s effort to be so candid with such a private and sensitive issue. She has done a stellar job of using her celebrity to raise awareness for BRCA and for genetic testing. By the way, men are also at risk for inheriting the BRCA mutations; men are also at risk for developing breast cancer and other cancers as well.
 
Angelina recently disclosed her oophorectomy in The New York Times and discussed it and its consequences: “I had been planning this for some time. It is a less complex surgery than the mastectomy, but its effects are more severe. It puts a woman into forced menopause. So I was readying myself physically and emotionally, discussing options with doctors, researching alternative medicine, and mapping my hormones for estrogen or progesterone replacement.”

While ovaries are paramount for reproduction, science has yet to discover what other purposes they serve and how their removal impacts the body. I, like Angelina, was about 10 years away from menopause and had no idea how precious my ovaries were until they were gone. The younger you are when you have a hysterectomy, the more difficult it is for the body to adjust. Not to minimize the effects of menopause in older woman, but for them menopause is a gradual process. Removing perfectly healthy ovaries from a 40-year-old woman is an entirely different story – you are immediately thrown into menopause – there is no gradual process of adjustment to rapidly decreasing levels of hormones, and therefore you go into what I like to call "forced menopausal shock."
 
I greatly appreciated that Angelina acknowledged that forced menopause could be exceptionally challenging for women. Various factors will determine how a woman will fare after such surgeries. I was a perfectly healthy 40-year-old woman, with no cancer, no issues whatsoever with my reproductive organs. It has been a highly difficult adjustment for me; of course this situation will differ amongst individuals and each must consider the factors such as health status, age, etc. You’ll never know how you’ll feel until it happens. The hell that followed my prophylactic surgery because of Lynch syndrome was the impetus for my blog: ihavelynchsyndrome.com where I have candidly written about the difficulty of trying to resume some sense of normalcy sans my reproductive organs.
 
Initially, my doctors underestimated how much hormone replacement therapy I needed and simply put me on a low dose of estrogen. Two months out from my surgery, after my natural estrogen levels plummeted, I found myself on a downward spiral into severe depression and I suffered from migraines, lethargy, nausea, vomiting hair loss, dry skin, and was discombobulated by my ‘new’ body. I struggled for two years following the surgery.
 
I ate well, tried to exercise as much as could, meditated frequently, and tried hard to accept my new body and to reassure myself that I had made the right decision regarding the surgery, even though I felt so sick. I sought out several new doctors in order to ameliorate my charming new issues. My gynecologist was not helpful, neither was my gynecological oncologist. I began having frequent acupuncture treatments, which I found to be very useful in relieving some of my issues, even if only for a few days.  Eventually I went to an integrative medical specialist who recognized the importance of various combinations of hormone replacement therapy, which I had already suspected myself, and recommended I consider a cocktail of them. He tweaked the dosage of estrogen, and provided me with progesterone and testosterone. Living in Chicago gave me the opportunity to consult with a psychologist who specialized in people with genetic mutations and psychiatrist to help me deal with the psychological and emotional challenges I faced from the loss of my ovaries. Sadly not everyone in this situation has these supportive options available to them.
 
With the passage of time, the support of my new doctors, various forms of HRT, frequent acupuncture treatments, medications, along with the support of my family and friends, most my issues gradually disappeared. I could not have done any of this without exceptional medical care and additional financial resources.
 
However, I respectfully disagree with her final statement: “Knowledge is power.” I cannot help but think about the millions of women who have had hysterectomies and oophorectomies in the United States who must suffer in silence. Some women can be so emotionally and physically paralyzed from this procedure that they just do no have the wherewithal to seek additional help. Some women do not have adequate insurance or the resources to get the additional help they need and deserve. Under these circumstances, knowledge is NOT power for everyone. It is important to emphasize how access to costly resources can help in so many ways that are denied to a large portion of the women in this particular population.  
 
Georgia Hurst, MA
Ihavelynchsyndrome.com
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Anonymous

Member
0 Replies
Posted on
March 25, 2015
Two years ago, Angelina Jolie-Pitt told the world that she held the BRCA1 mutation; a deleterious gene mutation which significantly increases your chances of developing of breast cancer and ovarian cancer. Angelina’s maternal family history of cancer was the impetus for her to be genetically tested. Soon afterwards, she made the difficult choice to have a preventive double mastectomy. I applaud Angelina’s effort to be so candid with such a private and sensitive issue. She has done a stellar job of using her celebrity to raise awareness for BRCA and for genetic testing. By the way, men are also at risk for inheriting the BRCA mutations; men are also at risk for developing breast cancer and other cancers as well.
 
Angelina recently disclosed her oophorectomy in The New York Times and discussed it and its consequences: “I had been planning this for some time. It is a less complex surgery than the mastectomy, but its effects are more severe. It puts a woman into forced menopause. So I was readying myself physically and emotionally, discussing options with doctors, researching alternative medicine, and mapping my hormones for estrogen or progesterone replacement.”

While ovaries are paramount for reproduction, science has yet to discover what other purposes they serve and how their removal impacts the body. I, like Angelina, was about 10 years away from menopause and had no idea how precious my ovaries were until they were gone. The younger you are when you have a hysterectomy, the more difficult it is for the body to adjust. Not to minimize the effects of menopause in older woman, but for them menopause is a gradual process. Removing perfectly healthy ovaries from a 40-year-old woman is an entirely different story – you are immediately thrown into menopause – there is no gradual process of adjustment to rapidly decreasing levels of hormones, and therefore you go into what I like to call "forced menopausal shock."
 
I greatly appreciated that Angelina acknowledged that forced menopause could be exceptionally challenging for women. Various factors will determine how a woman will fare after such surgeries. I was a perfectly healthy 40-year-old woman, with no cancer, no issues whatsoever with my reproductive organs. It has been a highly difficult adjustment for me; of course this situation will differ amongst individuals and each must consider the factors such as health status, age, etc. You’ll never know how you’ll feel until it happens. The hell that followed my prophylactic surgery because of Lynch syndrome was the impetus for my blog: ihavelynchsyndrome.com where I have candidly written about the difficulty of trying to resume some sense of normalcy sans my reproductive organs.
 
Initially, my doctors underestimated how much hormone replacement therapy I needed and simply put me on a low dose of estrogen. Two months out from my surgery, after my natural estrogen levels plummeted, I found myself on a downward spiral into severe depression and I suffered from migraines, lethargy, nausea, vomiting hair loss, dry skin, and was discombobulated by my ‘new’ body. I struggled for two years following the surgery.
 
I ate well, tried to exercise as much as could, meditated frequently, and tried hard to accept my new body and to reassure myself that I had made the right decision regarding the surgery, even though I felt so sick. I sought out several new doctors in order to ameliorate my charming new issues. My gynecologist was not helpful, neither was my gynecological oncologist. I began having frequent acupuncture treatments, which I found to be very useful in relieving some of my issues, even if only for a few days.  Eventually I went to an integrative medical specialist who recognized the importance of various combinations of hormone replacement therapy, which I had already suspected myself, and recommended I consider a cocktail of them. He tweaked the dosage of estrogen, and provided me with progesterone and testosterone. Living in Chicago gave me the opportunity to consult with a psychologist who specialized in people with genetic mutations and psychiatrist to help me deal with the psychological and emotional challenges I faced from the loss of my ovaries. Sadly not everyone in this situation has these supportive options available to them.
 
With the passage of time, the support of my new doctors, various forms of HRT, frequent acupuncture treatments, medications, along with the support of my family and friends, most my issues gradually disappeared. I could not have done any of this without exceptional medical care and additional financial resources.
 
However, I respectfully disagree with her final statement: “Knowledge is power.” I cannot help but think about the millions of women who have had hysterectomies and oophorectomies in the United States who must suffer in silence. Some women can be so emotionally and physically paralyzed from this procedure that they just do no have the wherewithal to seek additional help. Some women do not have adequate insurance or the resources to get the additional help they need and deserve. Under these circumstances, knowledge is NOT power for everyone. It is important to emphasize how access to costly resources can help in so many ways that are denied to a large portion of the women in this particular population.  
 
Georgia Hurst, MA
Ihavelynchsyndrome.com
Report
dolwar

Member
0 Replies
Posted on
March 25, 2015
Hi Georgia, I read your article with interest. You have written lucidly and passionately over the past few years about your experience of surgical menopause, an experience shared by so many with Lynch syndrome. In the past, you have also expressed your disagreement with the assertion that knowledge is power, a concept that we have promoted here at Lynch Syndrome Australia, and one propounded by Ms Jolie Pitt in her New York Times article. You reiterated your disagreement in this opinion piece and I must beg to differ with you. To know is indeed to have power. Power is the ability to act or affect something strongly. It is strength, vigour, energy. In most developed and many developing countries the world over, with notable and lamentable exceptions such as the USA, universal or easily accessible healthcare means that advice and choice is available to those who have been diagnosed with Lynch syndrome. When we say that to know about our genetic mutation gives us power, no-one is implying that this power is absolute. Having preventive surgery does not protect Ms Jolie Pitt from all her BRCA risks (peritoneal cancer, for example). She does not pretend that it does. What it does mean is that having your diagnosis, coupled with good advice and a civilised healthcare system, gives you the ability to act in a particular way, should you so choose. Either way, in arguing the nuance of power - and its limits or gifts - we are all just fiddling whilst Rome is burning. As you know, the lucky few who know their Lynch status represent, on average, just 5% of those who carry the gene. For 95% of those who carry a Lynch syndrome genetic mutation, such an argument is futile. For the vast majority affected by Lynch syndrome, it is ignorance, not knowledge, that is killing them. Nonetheless, I am sure that all our voices from around the world will coalesce as do our objectives to increase awareness and to advocate on behalf of all those whose lives are affected by Lynch syndrome. Good luck with all your endeavours! Best wishes, Susan Morris Lynch Syndrome Australia
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Ellen

Member
0 Replies
Posted on
March 25, 2015
Dear Susan, If I may, I'd like to respond to your comment above. Georgia Hurst, as I'm sure you realize, has been a tireless and very successful advocate for the Lynch Syndrome community. She constantly advocates for informed consent, genetic counseling and genetic testing for all people at risk for all hereditary cancer syndromes. In short, she has been a devoted advocate for knowledge and empowerment for all. Her recent commentary re: Angelina Jolie was simply pointing out that, in addition to knowledge, people at risk need access to the resources that will actually help them reduce their risks. Period. This may mean health care services, it may mean emotional support, it may mean access to clinicians who are well-versed in the issues at hand. Please join me in applauding Georgia for her significant efforts to promote knowledge and empowerment across the board, rather than interpreting (incorrectly, I believe) her statement that knowledge ALONE is not enough. Ellen Matloff
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aspen1528

Member
0 Replies
Posted on
March 26, 2015
Susan, I hope all is well down under. I am producing and directing a documentary entitled, "PINK AND BLUE." The film centers on hereditary cancers and spotlights the fact that MEN carry the BRCA mutations as well. Everyone has his or her own journey. I lost my grandmother Irma from breast cancer two weeks before I was born, my aunt Carol at 49 from ovarian cancer, and my 47 year old sister Sammy from triple negative BRCA2 positive breast cancer. My other sister Lisa had preventative surgeries in 2009 after testing positive. I too carry the mutation and go get MRI's and mammograms every six months. I'm trying to figure out the reasoning behind your response to Georgia Hurst’s commentary. Within the first couple of paragraphs she lets people know that men can carry the mutation and can get breast cancer. Knowledge is the circumstance or condition of apprehending truth or fact. You defined power as, "The ability to act or affect something strongly. It is strength, vigor, energy." You also stated that to know is power. Leaving vital facts out of,” the conversation” like men carrying the mutation (within the BRCA mutation realm of which the topic is) runs opposite to your fundamental concept to which you promote. Without raising awareness to this fact alone removes knowledge and power from the equation. Georgia Hurst should be applauded for not towing the party line. You wrote: "In most developed and many developing countries the world over, with notable and lamentable exceptions such as the USA, universal or easily accessible healthcare means that advice and choice is available to those who have been diagnosed with Lynch syndrome. When we say that to know about our genetic mutation gives us power, no one is implying that this power is absolute. Having preventive surgery does not protect Ms Jolie Pitt from all her BRCA risks (peritoneal cancer, for example). She does not pretend that it does. What it does mean is that having your diagnosis, coupled with good advice and a civilized healthcare system, gives you the ability to act in a particular way, should you so choose." Lets just say you are spot on. In my opinion you can, “ Have" all the facts you need, but that won't help you in a country like Australia where 16-18%(not too civilized) of the country waited for more then two months in order to see a specialist for tests, and elective surgery. Your disdain for America is quite transparent, but that should be part of another discussion. We are all one team trying to pay it forward in order to help others. In Health- Alan M. Blassberg
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Linda2

Member
0 Replies
Posted on
March 26, 2015
I thought I'd take a moment to respond to this discussion. I live in a world of Li-Fraumeni Syndrome, a hereditary cancer syndrome caused by a mutation of the p53 gene, the major tumor suppressor of our DNA. In Li-Fraumeni syndrome, while there are some types of cancers more prevalent than others, every cell in your body is at risk. Having lived with this risk I do know that knowledge of my syndrome gives me an opportunity for regular and frequent scanning which is to detect cancers early while they are still 'curable'. However, with that being said, I also know that knowledge is only power when the following are also present: 1.) You have the intellectual and emotional capacity to act on that knowledge. Some people don't want to know, don't understand their risks or go into complete denial. I even know of some that commit suicide. 2.) You have access to high level medical care. I know of many people around the world that know they have this genetic mutation and have to fight with medical professionals ignorant of the risks to get the proper tests ordered. 3.) You must live in a geographical location where you can access this care and/or have a the MEANS to get there. Many people I know are disabled due to cancer and do not have the funds to fly to hospitals with appropriate testing equipment. So they must rely on charity, raise funds through social media or forego screening. 4.) You have no insurance, insurance denies your screening. For some it is hard enough to battle cancer, multiple cancers and then have enough fight left to battle insurance. Not having insurance is self explanatory, being under insured is another issue. So for the 'lucky', privileged, living in the right place, on the right side of the disparity, knowledge can be power - if it is actionable! Otherwise power is just a word. - Linda Zercoe
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