Tuesday, June 26, 2012

Two Roads

If you had the chance to change your fate, would you?

That question came at me recently while sitting with my boys in a theater watching a trailer for the movie, "Brave."  The main character, a young girl named Merida, asks that very question as the film fades to black leaving the opening date looming large on the screen.

June 22   

Just as it looms large in my brain.  The date of my bilateral mastectomy, three years ago.

Did I change my fate on that day?

I suppose I tried to.  The decision to have a bilateral mastectomy was mine. The idea...mine.  It was not the first suggestion of any surgeon since the only evidence of cancer was small and contained.  Lumpectomy was the preferred procedure.

Breast Preservation was a term I learned then and heard quite often in those early diagnosis days.  As if saving breasts were the point here, the ultimate goal.  As if just cutting out the cancer as carefully, neatly and least intrusively as possible was the mission and perhaps, for some, it is.  I remember sitting with the first surgeon I consulted thinking I was missing something because although saving breasts are intrinsically tied to saving a life for some, it wasn't for me.

I think here's where perspective comes in.  I had just seen too much.  Knew too many people who had died.  People who were declared fine for many years, only to… Well you know.  I'm actually tired of writing it.  The same old story.  The cancer came back.  So in my mind, as I sat being told survival rates for those with mastectomy versus lumpectomy were basically the same, I knew I couldn't do it.

Accepting that decision was another matter.  Acceptance did not come easily.

I was reminded of Robert Frost's poem, The Road Not Taken.

Two roads diverged in a yellow wood,
And sorry I could not travel both

My mental struggle took several weeks to clear.

Every person, every diagnosis of breast cancer is unique.  No two circumstances are ever the same and neither are the ways of approaching, dealing and living with this disease.  No one is right or wrong.  Each moment is personal and for me...I knew I couldn't walk away after a lumpectomy and weeks of radiation feeling positive about my outcome, in spite of comparable statistics.  I knew I'd question my choice everyday, worry I hadn't done enough, harbor regret.

In the end, I guess it mattered more for the peace of mind it granted me, rather than better odds.  I believe I had done all I could to stave off recurrence, knowing full well, neither method was guaranteed, but now I wouldn't second guess myself and that...was everything.

Did I change my fate that day?

Who knows?  But, three years later to the day I was far away from that time, that moment, even the place where it all happened.

Here, looking out at the sea and my boys, whom I've had the pleasure of watching grow three years older.


It's a good start, despite the difficulties of reconstruction and regardless of what may come, I believe in my decision and the path I started on that day.


Did you struggle with surgery options?

Any regrets?



22 comments:

  1. Great post Stacey! While I didn't struggle with surgery options, but with the decision to have chemotherapy which I feared would leave me infertile, so I really understand how crazy you can make yourself trying to weigh up risk factors, at a time when you feel hugely under pressure and are still in shock at the diagnosis. Marie

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    1. Marie, you make a good point. I didn't have to consider fertility, but so many people do. This is just another example of how different we all are, yet the weight of our decisions is equally huge. I'm sorry you had to deal with such tough choices. Cancer just sucks on so many levels. It takes so much from so many. xoxo

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  2. Stacey,
    The decisions we are forced to make are tough ones sometimes aren't they? I'm glad you are at peace with your surgery decision and that you believe in the path you chose. That's what really matters most. It's great you were far away on "that" day this year and spent time with your family at the sea. That was the whole point of that decision three years ago wasn't it? To be able to do just that and more. As for me, I didn't struggle with the bilateral decision. With my genes, it was pretty much my best option. How could I not have chosen that? My other preventative surgeries I did struggle more with. Great post, Stacey.

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    1. Hi Nancy, you're right. You had to choose that option. The scenarios that bring us to make such decisions are so very different, so individual, but so tough in the same crappy way. I supppose that's way we find such great support here. Who else can understand? You're right about spending time with my family...that was exactly the point. Thanks, Nancy.

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  3. Stacey, I just love your blog and I love this post. What matters is that you made the right decision for YOU and are at peace with it. That's what I would hope for all of us.

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    1. Thank you, Jackie. I always love your thoughts. Peace with our decisions is the most we can ask for, I suppose. It helps get us through the day (and night!). xoxo

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  4. I made the same choice when faced with identical decisions. It was the most difficult decision I've ever had to make in my entire life. I am at complete peace with my decision. Funny how I recall sitting with a therapist saying, "I am 98% sure this is what I should be doing. It going to take me FAR longer to move that final 2% than it took me to get from zero to 98%." And it did.

    For me, it came down, not to a recurrence of the cancer that was in my face (well, my breast).... it was when I realized I was at a far greater risk for developing a SECOND primary years later. That was when I was able to understand I was reducing risk for a new cancer. Plus, I was petrified of the radiation and mastectomy got me a "get out of rads free" card in the breast cancer monopoly game.

    Ironically, I was still in the final phases of reconstruction when my mom DID get a dx of a second primary and it was 20 years after her first diagnosis. If I had even the slightest second thought, there was my own fear. Plus, the pathology on the "good breast" had several areas of potential problems so ....

    Great post, Stacey.

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    1. AnneMarie, I love how you describe this as accepting the final 2%. That's how I felt. That was the hardest part. I never considered a second primary, always thought of it as a recurrence, but you're so right. Just another fear. I'm sorry your mom had to go through this yet again. I hope she's doing ok. Thanks for sharing. xoxo

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  5. So glad you have 3 years behind you! Time flies. Great post.

    After an MRI detailed how much tissue my surgeon would need to remove, and after said doctor told me a lumpectomy would leave me disfigured due to the small size of my boobs, the decision to have a mastectomy was actually easy. And I had said all along, if one boob has to go, they are both going. So deciding to have a BMX was a quick decision. (Like, at the time he told me I needed one I told him I wanted two.) For me, there was no way I wanted to go forward worrying about what I was harboring on the "good" side. You gotta listen to your gut. My pathology came back not only with IDC in my right side but also with an undiagnosed DCIS that was not seen diagnostically. And my "good" side? ADH and micro calcifications. Surgeon later said, "You made the right decision."

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    1. Hi Renn, thanks for sharing your experience. I'm constantly fascinated by how different we all are, every diagnosis... it's crazy. I'm glad you listened to your gut. In the end, it's those words we need to live with. Love to you.

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  6. This has been so helpful to me. Although its other questions I have struggled with, being on my own with these decisions has been really stressful for me. It's been my hardest decision because it has to be mine alone.

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    1. Hi Audrey, I'm so happy to have helped in some small way. That's why I put all this out there, hoping someone, somewhere, can relate to it. I had my husband by my side every step of the way, but in the end, this was my decision to make on my own. It was mine to live with because it was happening to me. So, I know what you're talking about. Our awesome #bcsm community is always here to listen if you need. Sending many hugs.

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  7. I hope you enjoyed Brave? We are quite excited about it here in Scotland. It doesn't launch till August. Enjoy those precious time with your children.

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    1. Thanks, Audrey! We're having a nice summer so far.

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  8. What a wonderful post! You are so right about no two breast cancer experiences being the same. In my case, I wanted to keep my breasts, so I did the lumpectomy with radiation. However, I got a scare five years later, only a few months after my friend died from breast cancer. Perhaps my friends' death saved my life because I then decided to get a double mastectomy with reconstruction.

    I have no regrets and am glad I got the major surgery when I did. Had I done it 11 years ago, I wouldn't have had the DIEP flap, but another procedure that maybe wasn't as good. Of course, the DIEP flap is no walk in the park either!

    Congratulations on three more years and here's to many, many more!

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    1. Hi Beth, it must have been so hard to endure a scare five years later and then prep yourself for another surgery and I'm sorry about your friend. I'm glad you feel good about your decision as I do about mine. I have to remember everyone is different, but sometimes it's difficult to stop myself from saying, "Go with the bilateral." You know? xoxo

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  9. There is a lot of power in making a firm decision. Even if we wrestle in the implication – a decision made pushes us forward. It was like that when I met my husband, when I left my home, when I got sick and decided to stay away from home and when I came back. Sorry to talk so much about myself, but I understand what you mean about making a choice. We might always be left guessing about the ‘what ifs’, but honestly, if a decision comes from my gut, then those what ifs hold little power.

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    1. Catherine, thank you for writing about yourself! I'm happy my post made sense to you. Sometimes I wonder if it's just me, so I always welcome comments like yours. We're not alone, even if we have to make these decisions solely on our own. It's nice knowing others get it. So, thank you. And I love what you said about the "what ifs" holding little power. You're right.

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  10. Stacey, it always comes down to what we can live with, emphasis on the word 'live.' You're still here for your beautiful boys, for your husband, for your friends, and for your sisters here in the blogosphere. And I'm glad you are. xoxo

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  11. Stacey,
    Like you, I wanted both breasts removed, but seven years ago was told my good breast was a "perfectly viable organ," and it should not be removed. Two years later, when I discovered I was BRCA 2+ (I'd been assured I wasn't), I had the "good" breast removed. Regardless of our decisions, we must do what brings us as close to peace of mind as is humanly possible. The real problem is the more I know about breast cancer recurrence, the less peace of mind I have.

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  12. Stacey, I so wish I had chosen mastectomy my first time. Instead I choose lumpectomy and radiation. The result? A recurrence in the same breast. If I had had a mastectomy this would not have happened and I likely wouldn't have had my other breast removed either. Now I have no breasts, no reconstruction--and an ex-husband. But life goes on. We can't travel both roads, as you say so eloquently. Knowing in advance what was going to happen to me, I might have made different choices. Each of us must choose a path, make the decisions no one should have to make. Thanks for generating a wonderful discussion. xx

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  13. I have just joined this site and added my own breast cancer blog, so it is wonderful to read about everyone else's experiences. I too chose a bi-lateral mastectomy as I couldn't handle the idea of cancer in the healthy breast at a later date. For me, it has given at least some reassurance although of course there are no guarantees that it won't pop up elsewhere! My decision was based on feeling I needed to do everything in my power to eradicate or prevent the chance of recurrence whilst doing whatever I could to prolong my life so that I can live long enough to raise my two young children. Every decision I made was from this angle and it helped see me through chemo which was a truly awful experience. I am so grateful to be a four year survivor.

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