Unneeded bilateral mastectomy?!?!??? Don’t judge me!

Extra mastectomy may not extend life for some breast cancer patients
Reuters – ‎
NEW YORK (Reuters Health) – – For some women with early stage breast cancer, removing the healthy breast likely doesn’t afford much of a survival benefit, according to a new study.

There are several recent articles describing the choice to have a bilateral mastectomy as a poor one.

Here’s another one: The cost of peace of mind: A case of unneeded bilateral mastectomy
MIRANDA FIELDING, MD | CONDITIONS | JANUARY 10, 2014

Many of the articles cite the lack of improved disease-free survival and the increase in potential complications resulting from additional surgery. While these are valid points, the authors of such articles seem to fail to realize that a woman’s choice to have a bilateral mastectomy may have absolutely nothing to do with extending life. In fact, my choice to have the bilateral mastectomy had NOTHING to do with extending my life but rather improving my QUALITY of life.

When faced with a breast cancer diagnosis, what truly are the surgical options available?

Let’s talk about mastectomy with no reconstruction as a ROUTINE option. It should be offered, in my opinion, right along side DIEP flap, silicone implants, saline implants, etc…. Simply number X in a menu of options following the mastectomy, whether it be single or double.

Let me write a minute about my own treatment experience.

First – I had chemotherapy BEFORE surgery. This is a huge deal as it gave me more time to come to a decision about the surgical phase of treatment. I cannot imagine how it must feel for patients who receive their diagnosis just days before the surgical phase of their treatment happens. People are expected to become sufficiently educated within days about surgical options and then choose the best surgical option for their situation. Can you imagine? I cannot. I’m grateful that I had chemotherapy first, which lasted months but left me feeling confident that my surgical plan was the right one.

Second – no one pressured me to “save” my healthy breast nor towards reconstruction. They did ask me if I was sure… I said yes. They also asked me if I was sure once chemotherapy was complete. I said I was. I knew right off the bat that flat was going to be the best option for me. I asked that no extra skin be left behind – I wanted the flattest result possible.

Why did I want a bilateral mastectomy? First and foremost – I wanted symmetry. Second – I did not want extra surgical procedures. Reconstruction often requires multiple surgeries: the initial mastectomy and placement of tissue expanders (which can be delayed or immediate), the placement of the final implants… A minimum of two surgeries can get a person from the mastectomy to an implant-breast – assuming no complication. If the patient wants nipples, that is another surgery. If there are complications, the reconstruction can require additional surgeries and sometimes additional surgery to remove the implants or attached tissue all together. Reconstruction is a tough road with no guarantees, and I was not interested in traveling it. Add to that – reconstructed breasts do not last forever – many are faced with additional surgery later in life… Third – I knew I would have scanxiety (this is a real word in cancer-world). Every time I would report for mammograms or MRIs, I knew I would feel stressed out, no matter how unlikely a second primary breast cancer was. That wee little “what if” part of the brain is difficult to shut up. Now? I’m mammogram-free – for life! I require fewer screening procedures, which is a nice bonus, I must admit.

Why else might a person want a bilateral mastectomy? Well, I have to admit, the lack of bras in my life is quite wonderful. I also find running and jumping far more pleasurable – even the simple act of rolling over in bed is nicer. And, compared to my reconstructed counterparts, it seems I have a lot more sensation than they do. Also, if I want to have the appearance of breasts, I can use prostheses on demand (almost – I don’t actually own any).

Is it all rainbows and unicorns? No – there are some clothing options I feel are unavailable to me… I just look funny in certain things… I do get comments about being flat (the things people will actually allow to come out their heads never ceases to amaze me). And I do miss my nipples quite a lot.

Net win, however.

Given that crappy situation, and let me be clear – it was a crappy situation, I feel that bilateral mastectomy with no reconstruction was the best choice for me. I think this choice is a deeply personal one, and I cannot say what choice is right for another… but I can say – with confidence – that the menu of options should be more inclusive.

For some of us, the best surgical plan includes reconstructing breasts… For others, it means a single mastectomy. For others, it means lumpectomy plus rads in order to save as much of one’s breast(s) as possible. For yet others, it means bilateral mastectomy…. For me – it meant bilateral mastectomy with no reconstruction. I have no regrets regarding that decision.

Finally, articles and discussions about our choices should be more holistic and less judgmental. There’s more to a treatment plan than simply extending life. Quality of life matters too! Health care providers should be asking us – what is your best hope for surgical outcome? What is your worst fear for surgical outcome? And they should listen and work with us to develop the best treatment plan for extending our lives and preserving our quality of life!

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Three years ago, I got that dreaded phone call….

Three years ago (and a couple of days), I got that dreaded phone call – you have cancer. What I find rather amazing is how often I still think about cancer. But, the fraction of time I spend thinking about cancer has shrunk dramatically…. THANK GOODNESS!

So, life here in Minnesota continues to be pretty terrific. I continue to have the NED label – that is no evidence for disease, for those of you unfamiliar with the acronym. It’s a nice little acronym, and one I hope I get to keep for years to come.

For now, I think I just have medical fatigue. I don’t want extra appointments. I don’t want any appointments, to be honest. Don’t worry – I go on schedule – I promise!

Short hair BY CHOICE!!!! Woot Woot!
short hair by choice summer 2014
(note kitty in the background)

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last chemo was TWO YEARS AGO!

WOW – time sure flies when you’re having fun!  Two years ago today, I had my last infusion of chemotherapy (AC was the flavor of the day).  It was the worst of all the cycles of chemo, leaving me sick and fatigued and generally feeling CRAPPY.

Fast forward two years, and I’m feeling pretty darn good!  Hoping to stay this way!  

It’s been a good day, starting off with a bike ride with a friend…  getting two major work tasks completed… fixing my bootie and Cheryl’s coat… In a bit, Tre and I will head to hockey practice.  What a delightfully NORMAL Sunday!  Woot woot!  

Image

My buddy and I at Glam Dolls after a delightful 2 hour ride in the snow.  Glam Dolls makes fabulous donuts.  Not exactly on the anti-cancer diet, but definitely on the SMILE diet!  They make an excellent vegan donut!

http://www.glamdolldonuts.com

 

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How to ask cancer patients how they are doing…. and an update.

Hello!  This post has a few goals. The first is to let my friends and family know – I’m still good!  I had one of those follow-up appointments just over a week ago, and I’ve graduated to less frequent appointments! I’m stoked. I seem to be doing well and continue to enjoy my NED status.

The second goal is to describe a response I recently wrote to someone’s asking about how to get people to stop asking us how we are feeling.  Interesting thing to think about, no?  I mean, it’s nice to hear that so many people care so much, but frequent requests for updates and details can sometimes be exhausting. Some people are relentlessly tactless when it comes to demanding updates on their terms.

Sometimes the conversation went like this.

Other Person (OP):  Hi Lee – how are you feeeeeeeeeeeeling?
Lee: I’m alright, and you? How are you doing?
OP:  No no – I mean – how are you feeeeeeeeeeeeeling? How’s treatment? Is it…

And the floodgates were open and whatever I was working on was total toast.

Some people simply must know what they want to know when they want to know it – regardless of situation, context, friendship etc… They are exhausting and frustrating and caused me to AVOID them (cue music)….

Sometimes you just wish people would stop asking. Not because of how MOST people behave… but rather because of how SOME people behave.

And so, here’s what I think about this person’s question – how to get people to stop asking how I’m feeling!

My response was usually  – I’m alright or I’m hanging in there… and you? How are you doing? With few exceptions, the conversation smoothly moved on. The exceptions? Well… most of the time, I’d simply say – meh – I don’t like to talk about it…. Sometimes I actually did have to lay down an explicit boundary – no cancer talk at work please. Really, I mean it, no cancer talk at work. But, those people were in the minority…

This wordpress blog site helped a ton in this regard. I asked people to check here rather than ask me detailed questions. People were mostly really cool about that… and I made sure that the blog was up-to-date during treatment.  In this way, I had more control over when I would talk about cancer and when I could simply have normal conversations.  Ah “normal” conversations – you know…  When people talk about children, school, work, weather, bikes (doesn’t everyone talk about bikes?).

Did I talk about cancer a lot? Probably more than I really remember. Did I talk about cancer too much? Probably.

The flip side? I also like knowing what’s going on with my friends undergoing treatment… When they have blogs or caringbridge sites or related, it’s easy for me to read about how things are going, and I’m less tempted to ask uninvited “cancer” questions.

When I see my cancer buddies… I just start up with “normal” conversation starters…

My favorite: Hey – it’s good to see you!

This one is my favorite because it hands the reins to the person dealing with the health issue. That person can then direct the conversation as desired… Sometimes, right to cancer… treatment… or the weather or a movie or a book or work…. or BIKES… What’s been delightful is how well it seems to work. I’ve clearly conveyed that I care about the person… and the conversation goes smoothly to right where the conversation needs to go.

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Quick update

FUCK CANCER!!!!!  No – not me – I continue to be NED (no evidence of disease), but a dear family member is undergoing treatment, a fellow bike racer is undergoing treatment, and I just found out that a local chef has bad ass brain cancer.

That’s all I’ve got for today. Realized that I haven’t posted anything in a while…

I’m good – stressed at work… worried about grandma and grandpa… almost liking this middle school thing (almost)… and pissed off that dear family and friends are getting hit with the big C.

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HOLY CRAP – it’s been two years!

WOW – just realized today is my two year diagnosis-day-iversay…. Well – actually – I have it on my google calendar, and my google calendar just popped me an email reminder. 

WHOA.

I continue to be NED (no evidence of disease), and I hope to stay that way for way more years!  

Hope everyone has a lovely and cancer-free day.

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Fuck cancer – yes yes, you’ve heard this from me before

FUCK CANCER – yes yes, people hear me say this a lot… see me write this a lot.

I have a friend who’s very very ill and doesn’t have much time left. And honestly – it pisses me off.

That is all.

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