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Oct 23

The Expandables

I have one regret. I didn’t go with my gut. I let Doctors talk me into something I didn’t want.

Way back in late January, right after the formal diagnosis, I was told I needed a lumpectomy followed by radiation, as I presented as an early Stage I, 1-lump cancer. My gut feeling told me to go for a double mastectomy, and I advocated that for myself. I had to meet with the surgeon a couple of times, and I told him why I was so sure this was right for me. (family history although NOT BRAC1/2)

In the end it was the right decision, as the 1 tumor turned into many, and stage I turned into stage III, in a mere few weeks between the diagnosis and the surgery. I will NEVER regret this decision.

What I do regret, however, are the tissue expanders. (I linked to a good explanation, but warning, graphic medical pics). Basically, I personally didn’t care about reconstruction. The surgeon, however, made me feel like he would only do a double mastectomy WITH reconstruction. I don’t know why. Maybe it just ‘felt’ like that to me. The whole thing is kind of blurry. Things were happening that I didn’t fully question. They told me I wasn’t thinking PAST the cancer, to the future, where I would care about having breasts, and that doing the expanders during the mastectomy was the sensible thing to do.

I know that I met with the plastic surgeon, Dr. D, and that the whole thing felt wrong. I wanted to consider one type of reconstruction, the TRAM flap, where they use the tissue from your lower stomach (or somewhere else). But Dr. D didn’t do that surgery at that hospital, it wasn’t an option unless I wanted to switch cancer centers. Which I did not. Dr. D is a very good doctor, I’ve seen his work, nice boobs (Several women showed me their boobs at that time. Cancer makes people do strange things). So I just went with it. I didn’t want to delay the removal of the tumour over questioning the wisdom of putting in the expanders. After all, they would only be in for a couple of months, get inflated and then swapped out in a second surgery. Easy Peasy.

Except I never asked ‘what if?’ Actually, I did ask ‘what if?’, but the whole way they approach things there is piece-meal, one little piece at a time, you don’t look at the long run, you look at what’s right in front of you. Which has been TREMENDOUSLY frustrating to me. At no point did we look at a time line and say: OK, here is the 3 month plan, here is the 6 month plan, here is the 12 month plan etc.

So I find myself here, 10 months since this started, with 30 rads ahead of me. For the record, 30 rads takes 6 weeks, because they don’t do it on weekends. right now, my end date is mid December. Dr. D told me yesterday no reconstruction work until SIX MONTHS after the rads, 4 if I don’t get a bad burn, which if you have been following along, you know there is no way I’m going to be the girl that doesn’t get the bad burn.

Even if I only wanted to take out the expanders, which for the record are hard as rocks, feel like hockey pucks pushing against my chest walls and are lopsided, it still cannot happen until late May, early June 2014…..

I only heard from women who loved their new boobs. I didn’t hear one single person say: I am not happy. Is it because there is no one else who isn’t happy, mid-process? Is it like child birth, a year later, you forget the pain (which I know nothing about, I adopted)? Or is it because the other women who are unhappy are no given a voice? When they give you numbers of people to call, to support you, they never ever put you in touch with people having a hard time. It’s always with the super-survivors, the super-peppy-happy-puppies-and-rainbow people. Which has it’s reasons, I get that. It would be nice, however, to hear the other side once in a while. The ‘this shit is really hard’ side. And the ‘maybe you don’t need new perky boobs’ side.

10 comments

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  1. Joanne

    It’s also an age thing. With my cousin (early 40’s) the doctors were all about the boobs. With my aunt (early 60’s), there was no argument when she asked to be “flat as a pancake”.

    1. outrunningthecloud

      yes, that argument was in fact brought up: ‘you are so young, you have to think long term’. I know for a fact it was never offered to my mother

  2. Nance

    I do wonder if the doctors just don’t want you to feel like you’ve lost the girls. I mean, yes, you told them you didn’t care, but, they clearly didn’t listen.
    I have no encouraging words about the wait. I wish I did. Hugs and wine.

  3. R

    Gotta say this is one of your best posts.

  4. gaby

    You’ll excuse me for being cynical, but these were MALE doctors pushing for boobs, right? So is it that they just can’t understand how a woman could NOT want boobs? So if she says she doesn’t care, they are CONVINCED she’ll change her mind later and they have to protect her from herself? Or is it that THEY don’t want boobless women going about their lives happy, content and fulfilled, and still loved by their husbands, children, friends and families… He IS a plastic surgeon, after all. He makes his living selling BIGGER boobs to women. Boobless women are a threat to his livelihood. Or maybe it’s both – seeing so many women desperate for bigger boobs, he can’t imagine anything else. And did they tell you how hard it would be to put the expanders in LATER, if you actually DID change your mind and want boobs? Because it seems to me that if it were to be a HUGE inconvenience, and costly and painful and whatever, you’d at least be going through it while HEALTHY and NOT on top of all the sh*t and stress you’re dealing with. Why pile one more painful, stressful thing on top of this heaping huge pile of pain and stress, when you could deal with it separately, later, and because you actually WANTED boobs? Well, I hope your blog is able to help OTHER women in similar situations. God bless.

    1. outrunningthecloud

      yes, they were male doctors, but the rest of the people (hope and cope, supporters, nurses, shrink) are all women. and they did discourage me from waiting to put them in because it would mean a 3rd surgery, and ANY surgery has risks, so putting them in during the first one makes it less risky. but there was a lot of pressure to decide right away. And not one person was on the other side of the argument. not one.

  5. LJ

    Hi Virginia,
    I’ve just started reading your blog and it made me cry and laugh and mad and everyything in between. Your blog isn’t all unicors and roses but it is an eye-opener especially to us-whether we are suffering from any illnesses or not. Keep bloggin’!

    1. outrunningthecloud

      Thank you LJ! This is a new blog for me, but I’ve been blogging for a long time, and I love when new followers make contact.

  6. RageMichelle

    Oh wow..so sorry you are going through this…but this is some powerful writing. Hopefully it will serve to help others get through this harrowing ordeal as well.

    I wish you peace and good health.

  7. C

    So true, V. All everyone ever wants to talk about is how wonderful it is to get nice new boobs. I wish “they” would consider the whole picture, and a variety of real experiences…

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