I rarely get involved with current trending dramas. However, I am simply horrified at the amount of negative and nasty judgements being thoughtlessly thrown at Angelina Jolie because of her choice to get surgery to prevent cancer. So much of it is based on ignorance, media hype, fear, and anger. Those same judgements are being directed at the whole ‘Previvor’ community; Previvor’s are people who have a very high risk of getting a fatal form of cancer so they choose preventative surgery before the inevitable occurs and it is too late for a cure.
I recently posted my own story, and the good news is that within one day I received over 200 likes on FB, and 300 likes on my blog, including many positive and supportive comments.
I also received some really ignorant hate mail. Just a few, but they were comments such as:
‘Go ahead and cut your boobs off, you are all freaks’.
‘My uncle had throat cancer, should I cut out my throat?’
Today’s was from a woman who said:
‘I thought self mutilation was a mental disorder. And I think that 13%
chances of not getting cancer is good, I’d take those odds in Vegas’.
I have also seen some really nasty comments directed at Angelina. The worst was an ant-Semitic hate comment. My personal favorite was one saying that she did it as a publicity stunt. I have seen articles that suggest that the statistics don’t mean anything and that you can cure cancer with food and meditation; ie that it is simply a matter of mind over matter and food. Today I read an article that claims to have evidence that she did it as part of a corporate conspiracy to steal the BRCA patents and influence the Supreme Court decision.
I have no interest in getting into arguments with this level of ignorance. I don’t mind a healthy debate. If someone is intelligently questioning the options and choices, and they are presenting alternative perspectives with an honest desire to get into a good dialogue, that would be great. But this other stuff is just crazy; it appears to be based on ignorance, media hype, fear, and anger.
Most people don’t even realize that there are different types of cancer nor do they understand what having a BRCA gene mutation means. From what I have read, if you have a BRCA1 gene mutation (which is what Angelina has), you have an 87% chance of getting a non-treatable, hard to diagnose, and very likely fatal form of breast cancer. In addition, you have a 50% chance of getting ovarian cancer, which is currently almost undetectable until it is too late too treat. If you have the BRCA2 gene mutation, you would be at very high risk for getting an estrogen positive breast cancer, which is more often treatable, IF you catch it on time which is always a big IF. I don’t know what the statistics are if you have both mutations.
Some of the harshest critics are saying that 1) getting cancer is not based on genetics but rather the poison in our food, water, cosmetics, land, and air, 2) Oncologists, plastic surgeons, and the medical community feed on our fears to make money, and 3) Why would someone do such a thing just because they might get cancer, as if it was some remote possibility.
I for one am a hard core conspiracy theorist. I will not be surprised if the day arrives when it becomes common knowledge that the ‘cancer’ industry has been feeding us cancer for decades with toxins in our cosmetic products, our food, our water, and our air. I also believe that is highly likely that there are much better cures for cancer available than we are currently being led to believe. It seems clear to me that the pharmaceutical companies are making billions of dollars in the overuse of current medications and with the treatments we are being offered. I could go on and on about this.
However, there is considerable evidence that there are genetic markers that are very strong indicators of whether someone is likely to develop certain types of cancer. Is this simply a correlational relationship or a causal one? Is cancer caused purely from environmental factors? Is it purely hereditary? The age old ‘nature vs nurture’ question is at play here once again. The bottom line is that we really do not know yet what causes cancer. It sure doesn’t seem like there is one simple cause. In all likelihood, the roots of the disease include a combination of hereditary and environmental components. In addition, I imagine that other health care issues including things such as stress, over work, a lack of a spiritual connection to ourselves and to our planet all play a part in the ever growing cancer epidemic.
So what does any of this have to do with preventative mastectomies if you have the BRCA gene mutation?
Imagine this scenario. You are a woman, somewhere between the ages of 21 and 40. You have young children and a husband or a wife that you adore. Or you are 40-60 and you have new grandchildren that are the most amazing beings ever. Perhaps you are like me and you have no children but you love your husband, your life, and your kitties more than you ever thought possible. It could be that you haven’t had children yet, but you really want to live long enough to fall in love and start a family.
You find out that you have the BRCA gene mutation. Your mother, your aunt, your sister, and maybe a favorite cousin have all died from some form of cancer. You have watched them suffer slow and painful deaths. You saw their children and your family members suffer at their loss. You know that you have an 87% chance of getting a fatal form cancer. You have to get tested constantly but if you don’t catch it right away, your chances of survival are even lower. Every day you wake up with the feeling that you have a ticking time bomb on your chest. More than anything you want to live to see your children and grandchildren grow up and you want to be there for them.
You come home from work and your child or grandchild ask you things like, ‘are you going to get cancer?’ or ‘are you going to die?’
Getting a PBM (prophylactic double mastectomy) reduces your risk of getting cancer to 5%. FIVE PERCENT.
To me, it’s a no brainer. Why in the world would anyone keep the boobs in this instance? They are just BOOBS. Our bodies are amazing, yes, and unique and worth taking care of. And the surgery is a HUGE deal. It is NOT something to be done thoughtlessly. However, any idea you have about losing your beauty from this are way off base. Nowadays the surgery options are amazing, and often, foobs look much better than their original counter parts.
A PBM is the best known prevention option that is available at this time if you have the gene mutation and if you are at a very high risk for getting a genetic based cancer. Yes, perhaps better treatment is being hidden from us. Yes, perhaps if we heal our planet, deconstruct the food industry, ban big government, and expose the multi billion dollar cancer industry for what it is, we might discover new and better ways to prevent and treat cancer. Perhaps if we had eaten differently as children, if we hadn’t allowed our world to become poisoned, or if our medical treatments were not controlled by our government, our genetics may not have played out as cancer. Who knows?
But I for one was not going to wait around for that to happen. By then, most of us who are at high risk would be dead. As my friend Lisa Sousa says, it is MY DESTINY. I am the one who has to live with it or die with it. I was one of the lucky ones, I caught it early before it became invasive, before it spread to my nodes, and metastasized. If I had not, I would be telling a very different story today, if I was even alive to tell any story at all. And if I knew then what I knew now I WOULD have had a PBM before I got cancer. I know that many of my fellow PBM girlfriends would attest to this, waking up cancer free every day and knowing that my chances of getting breast cancer again are lower than the average woman, makes it all worth it.
We have all heard the stories of the super health food people who live pure and clean lives, but who get cancer and other diseases. And we have also heard the story of the lone wolf who smokes and drinks relentlessly, eats bacon and eggs daily, never exercises, and never gets sick. I have seen friends try alternative methods for healing such as raw foods, or alternative treatments, only to have their cancers grow and spread. Steve Jobs, one of my heroes, had a rare form of pancreatic cancer that actually likely would have been cured with traditional western medicine. He was a very committed vegan and alternative health person and he chose to delay chemical treatments until it was too late. He acknowledged in his biography that this was a mistake and that he wished he had started treatment when he could have been cured.
When western medicine offered me a 95% chance of a cure, as compared to alternative healing methods that have no consistent or reliable treatments at this time, I chose the 95% sure thing. If I had had a cancer that was not curable with western medicine, you bet I would have been chasing down miracle cures and alternative paths to healing. Do I believe that food, integrative health techniques, and deliberately changing beliefs can heal us? Absolutely. Do I know how to do that yet? Not a chance. Nor have I seen reliable evidence demonstrating that alternative methods such as the use of food, plants, and supplements can consistently prevent or heal cancer in the real world. Yet.
Another group of people that are judging Angelina are woman who have completed a PBM or who have had cancer and surgeries. They claim that just because Angelina has money and power, and resources that most of us don’t have, her choice to have this surgery is not as difficult as it for us average plain Jane’s struggling to make a living. Some people condemn her for coming out and sharing it with the world or they blame her because the media is making a big scene out of it. I have also heard criticism of her because she did have the money to get the tests and the surgeries that most people don’t have access to.
Because I did have cancer, some people think that having the surgery is more acceptable. However, even with my cancer diagnosis, I had numerous ‘new age’, and ‘enlightened’ friends judge me harshly and distance themselves when I chose a PBM, rather than seek out some alternative method for healing. It was really painful for me to lose many people that I had thought were life long friends during this time. I can’t even imagine the courage that Angelina has in sharing this with the entire world even in the face of the unbelievable amount of misunderstanding, judgment, and hate that s
he is now the target for.
Whether we like it or not, celebrities and the ‘beautiful’ people have a huge amount of influence. I am thrilled that she is using her power and influence to educate people and let them know what is possible. I have every confidence that she and others like her will begin to influence the powers that be and at least begin the process of making these procedures more available to more people at reasonable costs. Thank goodness that she does have the resources to really make a difference for all of us.
I only hope that if I were in a position of such grand power I would have the courage to do what she did. I can’t even imagine having to endure that much public exposure on a regular basis simply for being a star, but to then be condemned by so many for her personal decision seems intolerable. Her commitment to making a difference for others is inspirational.
I do not ask that anyone agree with any of this. I do ask that people take the time to get educated and understand before judging. If nothing else comes from Angelina’s ‘coming out’ other than people talking about these issues and arguing about them, at least this is a start. She is helping to legitimize a very valid treatment option that many of us who went before her have been criticized harshly for.
I say ‘Kudos’ to you Angelina. I bow to your courage and am humbled by your true beauty.
♥
~inspired girl
I just happen to run across this blog. I am very proud of my decision to have a PMB. I just think people that don’t have it don’t understand the worry that goes into every time you check your breast and find a lump. I went through 7 biopsies before I made my decision. I asked a surgeon once, how my going to know every month when I find a new lump if its cancer???? first surgeon just told me you can’t unless you get biopsied. Now tell me who wants to be biospied all the time. who wants to wait for the results just waiting for the other shoe to fall. Lost my baby sister to breast cancer. My other sister went through almost 2 years ago chemo after double mastectomy. I wasn’t gonna let breast cancer get me. I agree that AJ probably went through the same things that we did. She had to research talk with people and ultimately make her own decision to stay alive.I just recently started a new job. It was extremely hard to go into this new position being flat chested.people don’t understand I don’t care. I’m alive for my husband my children my grandchildren and to take care of my mother. No mother should have to lose children over breast cancer when you have the option to remove your breasts and stay alive. for anything person out there that doesn’t realize the sacrifice but you have to make is it its not a smart person. You cannot compare breast cancer to any odds in Vegas or any other body part that you can remove to save yourself. Luckily breast cancer you can remove your breasts.I made a choice 2 years ago.I had to have three major surgeries and lots of recuperation. But I am here today to tell you I have not taken any chemo and I have not been diagnosed with cancer.I’ll take those odds any day thank you for listening
Thanks for sharing Shelly!I totally agree. Everyone has to make their own choice. Ya, the 3 surgeries and reconstruction are challenging, but so worth it! I am 5 years out since the last surgery, and so glad to be cancer free and living a good life! and who cares? Flat chested was kind of fun, and smaller breasts, for me, also fun! ENJOY! I know that your children and husband and family are just glad to have you alive! Blessings to you, ~inspired girl
Barbara, you are my hero! Before PBM, and after! I’m always touched and moved by your enlightened, educated and (what I consider) very down-to-brass-tacks view on this subject. I’m again inspired by your words and I’m so glad you posted this. Your clear and intelligent stand, and your courage to say what might be viewed as controversial, is not only admirable, but also relevant and important. Your outrageous courage and self love to make the choice you made is moving and inspiring, and I know that your passionate, intelligent, clear sharing about this will help others.
I get quite frustrated when I read, or hear of some of the (again, my opinion here) wacky comments!! …and “wacky” is the nicest word I could muster. I happen to be a fan of celebrities “putting their stuff out there.” It’s great when their real stuff gets seen – their involvement in political, social justice, or health issues, or anything for that matter! I don’t care if I agree with their stand or not, I simply support that they are being HUMAN, and showing us what they do, like, believe, eat, care about. Because, like it or not, the world is watching, listening-to, modeling THEM! So, yes, go ahead and show yourselves, celebs! As for Angelina going pubic with her decision (ahem! HER decision – she gets to make it), I say Hallelujah!
The decision to have a PBM, or, for that matter, any significant surgery, or invasive procedure, or anything that would be included in the category “major,” is most certainly not to be taken lightly. It is serious, requires lots of research, testing, consideration, and (in my opinion) prayer. But ultimately, the decision is owned by the person making it, the person who will be affected by it. Period. And while I welcome helpful and constructive comments, feedback, information, data, communication, etc., the “hateful” comments are simply needless, destructive and completely unwarranted.
For those who want to say it’s “freaky,” “self mutilation,” or think they’d “take these odds in Vegas,” how about playing these odds (insert infinite sarcasm here):
–Stop wearing your seat belt when you drive. No, really. I mean, c’mon, we wear seat belts just “in case” we get in an accident, but we have no evidence that we will actually get in accident. In fact, if we base our stats on past performance, the vast majority of us could make an assumption we will not get in an accident. So yeah, that sounds like a good idea, let’s stop wearing seat belts!!
–Oh, and the next time you feel that headache or sore throat coming-on, don’t you dare reach for that bottle of aspirin or pain reliever or throat lozenge, etc. No no no! You MIGHT be getting a headache, but you don’t KNOW for sure…
–And next winter, do NOT get that flu shot! And don’t let your elderly family members get one either! You know, the folks whose immune systems are compromised and who are at great risk for contracting influenza and other germs and sicknesses, and for whom that means something far more serious than it does for the younger population. But wait, we don’t for SURE they will get the Flu, so…
–Oh, and stop running, weight-training, or any other myriad forms of exercising… With the exception of the true practitioners out there (and I acknowledge, yield, and bow to them, as I know they are practicing from a place of authentic respect and connection), the vast majority of the over-eager-exercisers (myself included) are doing so to maintain health and – gasp! dare I say – prevent, or at least put-off, the deterioration of the muscles, body-strength, and overall health. So we better knock it off before we get shin splints, a herniated disc, or break our ankles!
And before anyone says “you can’t compare PBM to seat belts or aspirin or the flu shot,” yes I can. I just did. They’re all, in their own way, decisions we make about about saving lives or preventing sickness or other negative health issues. AND they are all decisions that are made by the person who is affected, without having the rest of the world judge.
Okay, end of rant… …for now…
Oceans of love and respect for you, Barbara! <3
Amen Sistah! Well said. Thank you Carrie!!!
Barbara, I am so glad you wrote about this. Yes, I have been wondering why…… and reading about Angelina Jolie caused me to do some serious research on this issue. Also, with you and another friend having done this not so long ago, I had all sorts of questions. I’m happy to say after doing the research, I understand and agree. I do hope that women will not make rash decisions to just have radical mastectomies because of fear, however, and really get tested.
Thank you so much Wind for taking the time to understand! and I totally agree, this is NOT something to be done lightly or without having done the research and really considered. From what I can tell, everyone I know who has done it has spent years considering it and other options. Also, from what I can tell, Doctors do not do this surgery unless it is truly warranted. There are some women who do it even though they do not have the BRCA mutation. Their mothers, grandmothers, aunts, and close relatives have died from cancer. And it is clear to them that there is some hereditary component. Thanks again for the thoughts and taking the time to do some research! xo inspired girl aka Barbara
I have to admit I didn’t think it was a great idea for her to go public. Her influence is tremedous and we know how many who are not educated can misinterpret the information and use it in an unhealthy way. That being said, after reading YOUR article here I have a new appreciation for the magnitude of a decision like this is. You are so right – they are JUST BOOBS! And if it changes your risk from 87% to 5% then there is really no question. I just hope that data is correct – it’s still new information and after being in the health care field for 30 years I have seen many trends come….. and go. We are often wrong – and that is something people need to keep in mind when researching new testing and recommendations.
Thank you for your bravery to address this tender topic. Women really need to rally FOR each other – even if we disagree, we need to support each other.
Namaste,
Nancy
Thanks Nancy for your thoughtful comments. I so appreciate you for considering my perspective, as well as others’. And thank you for the acknowledgement!
Yes, one of the worst possibilities of Angelina’s ‘coming out’ would be for people to use the information in an unhealthy way without education or awareness of their choices and consequences. From what I can tell, most doctors will not provide the surgery to women who do not qualify, nor will insurance companies pay for it if it is unwarranted. And for reconstruction it is at least 2, and often 3 surgeries that ARE costly.
I know what you mean about ‘trendy’ health care topics, and statistics changing. I have also been in the health care field for a long time. One year, eating FAT is bad, the next year, it is good, etc etc. It is crazy making.
Perhaps we will find that the statistics are off base. I would say however, that most of the women I have connected with who have also had PBM’s would say that after having seen so many family members die, they would still have done it, even if the statistics are only 50/50. Quite a few of them, myself included, do not even have the BRCA mutation. For the women that know that it is right for them, it is just such a clear choice. I DID have cancer, and could have had a lumpectomy, but I had no second thoughts about a radical double mastectomy and have never looked back or had one moment of regret. I am so glad that I did what I did, and I am truly grateful that my life is not ruled by cancer =) From what I can tell, most, if not ALL of the women I have encountered in the Previvor Community, with or without the mutation, feel the same.
THANK you, I agree, yes, women really need to rally FOR each other. Even if we disagree. Even if someone wouldn’t choose what Angelina did, let’s at least respect her courage and vulnerability in her choice and in sharing it.
Namasté to you!
Inspired Girl aka Barbara
Great perspective, Barbara. I really didn’t have all the facts before this. You have shifted my own perspective considerably…not that I was one of the haters, but I didn’t fully grasp the issue. I really appreciate you putting yourself out there like this. I think people like yourself and Angelina will actually save lives by bringing this to light.
Thank you Alejandro for being open minded and being willing to consider new information. I think most people do NOT have the facts, or understand the consequences of the gene mutation, that IS the problem! Thanks for the support!
Bravo from a previvor
Thank you Lynne!
Wow, Barbara I so appreciate your educated and loving insight. I too am not one “for the drama” and happened to read an article last night that was thought provoking, I’m going to include it here warning:some of how it is communicated is judgmental, finger pointy, yet some of the thoughts I had not heard before and found intriguing : curious to your thoughts especially the part about genetics.
Thank you for taking the time to read and consider my blog post!
Regarding the article you wanted my thoughts on. I actually find it rather disturbing and upsetting. For me, there are many ways to heal, and to insist that one way is right and others’ choices are wrong, really bothers me.
Regarding the whole genetic issue, and changing your beliefs, etc. Of course I do believe that our thoughts create our reality, and that collective consciousness beliefs affect us all. I have personally witnessed miracles, and have healed some of my own health issues, and have seen others do it. I do believe that there are many foods that are curative also.
I agree, we are not victims of our past, whether it be our genetics, our childhood, things that we have done, or anything else. I do think that Cancer perhaps represents deep wounding in our collective psyche. We are killing our planet, so many people are disconnected from themselves and each other, we are poisoning our food and water and more.
But to say that all women who get Breast Cancer have a deep wound with the feminine and core relationship issues is simply ridiculous.
That being said, in addition, at this point in time, the alternative methods of healing are not 95% certain. The majority of humans have not evolved to the point where they can change reality by changing their thoughts. Nor is their currently an exact and specific method for using food or plants to heal that works CONSISTENTLY. We both have friends who have healed themselves, yes, and that is great! But I also have friends that tried alternative methods and died, and friends who tried foods such as raw foods, etc, and whose cancer progressed to the point where they went ahead and got chemo and surgery. Hopefully it was in time. And then of course there is Steve Jobs who could have been healed by western medicine.
So for me this issue is this. What lets you sleep at night? What brings you peace? For some people, they would prefer to seek out natural methods of healing and take the risks involved with that. They are ok with having to get tested regularly and keeping their breasts is very important, more important than the immediate experience of being cancer free. Good for them! If they can live with that level of uncertainty and IF they are educated enough and have done their research and know the consequences of their choices, then I am glad for them. Perhaps those people are carving a path that will lead to more reliable and consistent methods of natural healing for everyone.
For others like myself, lowering the risk to 5%, and getting a 95% cure rate, and moving on is much more important. I don’t have kids, but many women who do it have young kids and staying alive for their children is the most important value in their lives. For me, I have NO regrets. i did not want cancer looming in my life. Sure, I could get it again, anyone can. But my risk is lower than the average woman now. and I love my new foobs; I consider them a PERK.. Keeping the breasts was just not important to me. Being cancer free is.
I hope that answers your questions. All thoughts welcome. I appreciate you considering my perspective. That is all I am looking for, conscious dialogue, rather than the quick, uneducated judgements that many people are making about Angelina and Previvors!
Much love!
Inspired Girl, aka Barbara
Thank you for an articulate rebuttal to all the craziness that’s being posted out there!
Thank you Cindy, I am glad this is useful 🙂
Well said.
Thanks Eugene!
Wonderfully said Barbara!
Thank you so much Marian! I really appreciate your kind words 🙂