Thursday, May 16, 2013

TATAs on Notice? I'm so Ovary it.

The world is abuzz with Angelina Jolie's choice to have prophylactic surgery. To be honest my first thought was-Big Deal- in Hollywood- that kind of surgery is done over the weekend. Boobs are a dime a dozen- so are surgeries. I appreciate Angelina's "humanitarian" efforts to raise awareness of a very real issue. She opened herself up to a lot of scrutiny and judgement- but she has always been in the public eye- that is not new. Folks have been judging her since she was a child on various aspects of her physical form and decision making prowess. No one can know for sure why she went public- perhaps it was to raise awareness, perhaps it was to stave off speculative plastic surgery rumors and perhaps she just needed the support from her community. To be blatantly honest with myself- I am a bit envious. It's has been almost a year exactly to when I had my first mastectomy. Not everyone knows about it. I'm a publicly private kinda person. I am still a little unbalanced and I am not referring to my mental state. Over the past year- I have thought about removing the other breast, many many many times. Had I taken more time initially to ponder it- looking back- I might have gone for the 2 for 1 deal. I always said at the first sign of trouble- they were gone. But life chugs along with four kids- 2 of whom have serious medical conditions that require full time monitoring. I don't have a chef or a nanny or the other "support" to make these decisions easier. I am not downplaying any of the emotional stress that accompanies a major decision like this- I'm just saying the real world applications are a different ball game.

BRCA is serious. It is a huge increased risk of breast and ovarian cancers. That mutation has monumentally shaped the breast cancer game on so many levels. Ovarian cancer is a silent killer and so difficult to detect. Yet both of these organs can be removed. BRCA is very well understood- as is breast cancer- yet the treatments are still toxic and aggressive. It is one of MANY genetic mutations that predisposes women AND men to breast cancer. Cowden Syndrome, Peutz-Jeghers, Familial diffuse type gastric cancer and Li Fraumeni Syndrome to name a few.  Certain Li Fraumeni Syndrome mutations(because although BRCA has 2- as of a 2003 published paper- Li Fraumeni Syndrome has over 250 known germline mutations.) A friend of mine says LFS is like BRCA on crack. I say it is the mother of all hereditary cancer syndromes.

Mostly it's just hard. It's hard not knowing which body part is going to go bad. For starters- the "Main" LFS cancers are brain, breast, sarcoma and adrenal. I know for sure if you remove a certain one of those prophylactically- you will have an explanation for most of what goes on in politics. The spectrum of cancers a LFS mutant can achieve is not limited or excluded to these- these are the ones that are well documented in certain families. These are the types of tumors that make docs wonder if a person has a family cancer syndrome. The mutation makes our cells unable to suppress tumors and in some instances- that broken mutation actually makes cancer cells angrier.  One study boldly states that women with a certain LFS mutation have 100% chance of developing cancer by age 85(men have a 73% chance risk). The overall risk of women with LFS developing cancer by age  40 is 50% and both these percentages are so high because of the breast cancer incidence. Those of us with LFS know more young ladies in the 20-25 range who have battled the disease than we'd like. Ask them how they feel about prophylactic surgery. I feel fortunate that I was in my 30's, married to an amazing man who loves me as much as a uniboober as he did before(- probably more )and that I had the opportunity to have and breast feed my children.  I know women who faced breast cancer in their early 20's- the physical and emotional scars are debilitating. The long term effects are painful. In a society where so much hinges on physical beauty - can you imagine embarking on the dating scene with a roadmap of scars for a chest and a genetic condition that all but guarantees you will be further damaged by 40 and really flipping grateful to be alive after 60? Most young women worry about pregnancy and disease- young LFS women are no different- they worry that the life saving treatment they need will render them unable to ever get pregnant and the diseases they worry about have poor prognoses and are not easily treated with antibiotics.

It makes me furious that so many of these families like mine have faced multitudes of cancers FOR GENERATIONS. Mothers have lost children and husbands within months. Husbands have lost parents, siblings and children. I am deeply saddened in the lack of progress in battling this disease because it means the challenges will continue. Entire families demolished by cancer, And yet somehow we persist. Natural Selection is not survival in the fittest meaning the healthiest- it is the survival of those most capable of adapting. LFS mutants are the most capable folks you will ever meet. I think the same can be said for any family who faces hereditary syndromes. We face them head on and do what it takes to survive. Armed with the knowledge that life is not permanent and neither is health- we accept living with vigor. Rainbows are brighter, calm is appreciated, even storms are valued for what they bring. So I appreciate Angelina's choice and hope that this public declaration and awareness makes a very tough decision easier for someone out there. I call on others to be supportive of others decisions- they are most likely hard-won. You do not have to agree with the person or their decision- but know there is ALWAYS more than you see on the surface. Some decisions are life and death and necessary in the moment- some decisions have a greater element of choice and repercussions. All of it is a very careful balancing act of risk and quality of life that can only be determined by the person who faces it. When you have lived life watching those you love die- removal of an expendable body part or two- is not the hardest decision you ever have to face and most do it without a world of support or criticism. When faced with a syndrome that so many cancers have few or no treatment options- being able to proactively fend off the disease seems like a benefit. I do not mean to negate the momentousness of this process- but like Angelina's financial status and ability to procure the best healthcare- everything is relative. Some women would remove parts in an instant in an effort to be there for their children but have to face Institutional Review Boards and Insurance companies who ultimately hold the physical and financial possibilities of this control in their hands. Not only do you have to make the tough decision- you then publicly have to go round and round as to whether or not the medical community supports your decision.

I am over celebrities getting special badges of bravery and mountains of support for facing these diseases. Everyone should be so lucky to have this support.  For every Angelina- there are hundreds of women out there who have gone through this. None of them did it for the publicity.  I applaud those who use their celebrity and wealth to further research, quality of life and treatment for these diseases. I hope this is where she is headed with her publicity.  Many of us fight day in and day out for these causes as well as raise our own children, cook our own meals, do our laundry and drive ourselves to and from treatment. Many can not pursue dreams or careers because of the disease and the need to care for multiple family members fighting cancer or another debilitating syndrome.   That or we have really awesome neighbors who have yet to get sick of us and move to a different continent. As for my remaining tata- I think about it in the wee hours of the morning- the only minutes I get that are not dedicated to other necessary deeds. I think about the long laundry list of scans I should be undertaking to "proactively" screen for the myriad of cancers that could be growing in my body and I feel the weight of a hereditary cancer syndrome. I start to feel really down and sad. Then I realize- non of us would be where we are without the battles we face. There is a grand design- and we aren't meant to know it- part of the journey is figuring it out. Part of the journey is meeting these wonderful mutants along the way who are so delightfully snarky and different that it makes me proud to be one. It's knowing an amazing group of women who make me want to be better and do more and embrace and seize the positive when we can't control the negative. It's finding where you fit and understanding in a world of controversy. Ultimately it's about taking it a day at a time and knowing where you are and what you need to survive- and that connects us back to the rest of the world who are facing the same issue.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)