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My name is Laurie. I have always loved words, pictures, stories, and people. I read and write obsessively. Over the years I've kept paper journals, w...
 
 
 
 

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You Can Have My Ovaries: I'll Take My Life

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How important are my -- or your -- ovaries?

Recent research reported in the Journal of the American Medical Association last week indicates that women with a BRCA gene mutation who have their ovaries removed have a significantly decreased risk of contracting and dying from ovarian and breast cancers. These woman are also reported to live longer overall than women who opt not to have the surgery. The same findings hold true for women with this gene mutation who elect to have mastectomies.

Dry statistics, each percentage point representing a woman with an intense personal choice to make with countless variables factoring into it. What do you do with this kind of information that wasn't readily available even a generation ago? How do you weigh the possible, the probable, the "this might happen," even? What tips the balance towards having invasive surgery to have body parts removed, or to leave what might not be well enough alone?

Surely you have to think about it long and hard, and like anything else, listen carefully to trusted medical professionals about the risks and benefits. You need to talk to your partner if you have one, to your friends and your family. You need to talk to other women, ideally those who have made similar choices.

I've been thinking about what I'd do if I turned out to have this mutation. I've lived for forty years without having children. My chances of bearing a child in the next four years -- my personal cutoff date  -- are slim. So if, within that time, I learned that I'd have a better chance of living a normal, cancer-free lifespan without my internal reproductive organs?

Take my ovaries, please.

Really. Take them. I have no idea if I can get pregnant, or if the reasonable opportunity to responsibly bear a child from this body will occur in the next few years. My feelings about this notwithstanding, my brain knows full well that that ship may well have sailed.

But regardless? I love my life. I love being with my family and my friends. I love the places I go and the experiences I have, and -- for the most part -- the work that I do. And I know full well that producing a child from this body is not by any means the only way to become a parent  -- something which seems to warrant mentioning, even though it has nothing to do with my ovaries.

The thing is, I don't want to die yet, and I'd like to reduce my chances of getting cancer. My ovaries? Not essential to my daily survival, like my liver or my spleen. And in this case, the risk of contracting cancer -- coming as I do from a family that seems to specialize in the trickiest of organ cancers -- is something I'd like to reduce. If I found out with some certainty that my risk was much higher than average? I would indeed be willing to consider organ removal.

I would need to be fully versed in the facts, though. What about false positives? What are those dry percentages -- the likelihood that I would get cancer with this gene mutation? Is it 30 percent or 75? Because if it's the latter, where are my hospital admission papers? The former? Maybe I could wait awhile. And still, the averages might not apply to me. We've all seen the rules and the crazy exceptions -- the chain smoker who lives to be 92, the non-drinking, non-smoking young person cruelly dead of lung cancer.

And all of this assumes that I'd have the access and the desire to have genetic testing in the first place to find out if my BRCA gene is mutated.

Life is frightening and random. The more we know, the more complicated it can be -- and the longer our list of educated guesses. But looking at it from a more positive standpoint, the more educated we can be as well -- and the better choices we can hopefully make for ourselves and the people who share our lives.

I admit that I would feel differently if it were my breasts, yes. I wear my ovaries -- as equally liable as they are to become cancerous and kill me younger than I'd like to go, thanks -- on the inside. The question of taking my breasts is way more loaded, more intrinsic to how I see myself as I walk through the world, how I feel as a

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jenonthecusp 5 pts

Thank you, Laurie, for linking to my blog, too. (Sorry I'm a little late to the discussion!)

My decision-making at age 34, when I was diagnosed with breast cancer, vs any day before that was much different. I used to be shocked that people would go so far as to have their breasts removed for a possible risk. But, when diagnosed while I was breastfeeding my 10mo old first child, for her and my husband I decided to have the bilateral mastectomy (no reconstruction) and will have my ovaries removed sometime in the near future after my chemo and recovery. I will give up having more children to give my best life to the family I already have.

Once I sat down with a genetic counselor and walked through the numbers, my choices were clear. But this was after my own diagnosis. Now I'm watching my siblings go through the debates around testing and surgery. They are all at very different places in their lives. My only hope is that in 20-ish years there will be much better options for our kids than taking out body parts.

My cancer course is charted at crabby-lion.blogspot.com.

Thanks for the discussion!

Adriennevh 5 pts

That's about how long it would take me to decide.

I went through a Breast Cancer scare last year and told my family outright, that if the slightest bit was malignant, I was planning to have a radical double mastectomy.

I no longer have any use for them (never did actually since my body doesn't lactate). Some asked if I would feel "less than a woman" and I countered with do A cup women feel like less than women than DD cup women?

We are not a sum of our parts.

MelysahBunting 5 pts

I am one of few who would easily give them up. I agree with you. My life is good.

We've been trying 2-3 years to have a baby. After a while longer we can either keep trying, adopt or seek out some other option.

I just have a need to care. I'd be quite content becoming a licensed wildlife rehabilitator. I could be a mom to animals, my own children, or join a program like Big Brother Big Sister. Compassion is need everywhere.

Teri.Smieja 5 pts

Hi, I'm Teri, the one you mentioned in your article. First of all I just want to say thanks so much for the wonderful words, and for linking my blog. I try very hard to be there for others in my situation - making these choices is the hardest thing most of us will ever face in our lives. As my friend, Sandra (commenter above) mentions, it's an entire slew of emotions one faces. We have these surgeries not really because we 'want' to, but because our choices are so limited. My hope, and the hope of others like me is to continue to spread the word about BRCA mutations (thank you for helping!) enabling more work and research and be done - we want better options for our children than removal of healthy body parts. For now though, it's our best option, and we do it, though sometimes it results in unforeseeable complications. We just have to keep fighting the fight, and using our voices to spread the word..

Teri

Sandradginzburg 5 pts

As a BRCA1+ genetic mutant, I did face this decision. Even though I was past the age recommended for oophorectomy when I found out about my mutation (I was 40), it took me a year to finally decide to do it. It's not just about what's on the inside and the loss of childbearing capabilities (I already had three children and I didn't want more) but it's about the psychological impact of being "artifically aged" or "automatically menopausal" and facing down everything that goes with that - yes, you reduce your risk of cancer but you dramatically increase your risks of osteoporosis, heart diesese, dementia, not to mention the fact that some sexual dysfuction, although treatable, is virutally guaranteed as a result of this surgery.

These are not trivial concerns.

I searched far and wide for an alternative to this surgery - I consulted many doctors, read every study I could get my hands on and only when I was finally convinced that there was no alternative did I finally agree to have it.

You can read my story at my blog, I'm A Mutant: http://sandradginzburg.typepad.com/imamutant/

On a side note, Teri of Teri's Blip is a good friend and she had done a tremendous amount of outreach and support for women like us who have to face down these impossible choices.

lauriewrites 5 pts

But I did want to give an overview of the situation because I think we'll only continue to see more of these options to decide between and weigh in with other more familiar kinds of medical interventions.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

lauriewrites 5 pts

TOTALLY( your decision, but that's what I would want you to do too.

No pressure.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

lauriewrites 5 pts

I have no idea how much it costs, but I'm sure it's not cheap.

And may you be healthy and happy for a very long time!

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

lauriewrites 5 pts

I'm sorry for your losses.

I know everyone has their own lines in the sand and decision-making process. Tough calls, for sure, but it's nice to know that some people have been able to have healthier, longer lives, as a result of these procedures.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

lauriewrites 5 pts

And scary, really. I hope that things are going well for you.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

lauriewrites 5 pts

I'd need a lot of information and then I'd have to consider it before I made a decision. I hope I didn't make it sound easy, because that wasn't my intention.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

lauriewrites 5 pts

I'd need a lot of information and then I'd have to consider it before I made a decision. I hope I didn't make it sound easy, because that wasn't my intention.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )
Photos on Flickr ( http://www.flickr.com/photos/rubyshoes )

Chocolate Mama 5 pts

Never would have thought about that. You offered up a lot of information.

What doesn't kill me will only prove to make me stronger!!

Sarah 5 pts

It isn't surprising, but I agree with you.

Depending on where you are in your life it could be a very difficult decision to make. Deciding to have your ovaries removed is not an easy choice, but if it is what I had to do to save my life it is what I would do.

BlogHer Contributing Editor, Sarah can also be found at Sarah and the Goon Squad ( http://sarahandthegoonsquad.com/ ), Draft Day Suit ( http://draftdaysuit.com/ ) and MamaPop ( http://mamapop.com ).

JennaHatfield 10 pts

I really need to get tested. When my mom didn't show up with the gene, I thought I was free and clear. Then my paternal Grandmother got breast cancer this year, meaning my dad could have been a genetic carrier. Fail.

Thanks for the kick in the pants to start researching whether it will be covered or not -- it won't.

And? I'd give it all up -- breasts and ovaries -- in a heartbeat if it meant I could stay with these people I love so dearly.

Contributing Editor Jenna Hatfield (@FireMom ( http://twitter.com/FireMom )) blogs at Stop, Drop and Blog ( http://stopdropandblog.com ) and The Chronicles of Munchkin Land ( http://thechroniclesofmunchkinland.com ). She is a freelance writer and newspaper photographer.

materialmama 5 pts

I've had three children and two traumatic miscarriages. I love my children but at 42 feel like I'm DONE. I get pregnant far too easily and yet the last two didn't end up with a child because they died.

I would have given anything for those boys to have survived but it was not to be. We even tried adoption. No go.

Prevent cancer? You betcha. If this proves to be authentic I'd be fine with it. I do feel a little bad that my husband had a V two years ago and I could have had this done but oh well.

~ Nutmeg

www.TheMaterialMama.com ( http://www.TheMaterialMama.com )

www.classroomhacks.org ( http://www.classroomhacks.org )

Judy Schwartz Haley 6 pts

love the fact that this conversation is taking place. prophylactic surgery might not be the right choice for everyone but it's good to know about the risks and the options available.

I was diagnosed with breast cancer this spring at the age of 39, since then I have met many, many women who were diagnosed at even younger ages. It's easy to think that breast cancer is an old woman's disease, something to worry about in the future, but it's not. It's something to think about now.

CoffeeJitters.net ( http://coffeejitters.net/blog )

Melissa Ford 5 pts

It's a lot of food for thought. I don't know if I could make the decision without needing to make the decision; without being in that situation. It feels too grey in my head.

Melissa writes Stirrup Queens ( http://stirrup-queens.com ) and Lost and Found ( http://lostandfoundandconnectionsabound.blogspot.c... ). Her book is Navigating the Land of If ( http://thelandofif.blogspot.com/ ).