Michele and I are really piss poor about updating this blog. I’d say I will try to fix that but I’m not one to offer up empty promises, hahaha.

Sooo what has been going on you ask if you don’t talk to us regularly. Well, Michele officially finished treatment in November, her last Herceptin treatment on Nov. 21st. She did have another surgery for revisions. I’ll leave it to Michele to elaborate more hilariously on that if she so chooses. That is definitely one thing they did not give us the heads up about, after a double mastectomy no matter what there will be revisions to get things to where you’re comfortable.

I know some women don’t care and are happy as is, others also choose to go flat, but I guess Michele and I being Cuban-Brasilian are more of the vain sort and would like to keep things at equal or greater value. Everyone has their own preferences and that is totally cool.

By now I think a decent amount of people know that I too have gone under the knife and had a double mastectomy (nipple sparing) with direct to implant reconstruction on February 23rd. I realize I just threw a lot of surgery jargon at you, I don’t expect most people to understand most of that except maybe for the nips part,hahaha.

So yeah I had surgery. And no it wasn’t a matter of wanting to be as cool as my twin or being one of those weird chicks trying to hog the limelight or drama. Michele and I have kept this kinda quiet for the most part, only those around us or speak to us regularly know that we have Li-Fraumeni Syndrome.

Yeah I know typical Costa style we have a syndrome that is ridiculous to pronounce. Personally I’ve heard it pronounced as Li-Fro-meanie, so I’m sticking with that till corrected. Most folks with the syndrome also shorten it and say LFS, less of a mouthful.

Also now some more medical jargon. The short of it is, LFS is a rare cancer syndrome that they suspect about 1000 families in the world have, it could be more prevalent than that. But there is no standard protocol in place to detect more cases.

If you read up about it online much like anything health related it tells you some scary shit no one wants to read about. Here are the bullet points:

• Women with LFS have a 100% lifetime risk of developing cancer
• Men with LFS have a 73% lifetime risk of developing cancer
• Most common cancers are brain, breast, lung, bone cancer, soft tissue cancer, and adrenocortical cancer (type of kidney cancer). However in reality all types of cancers are on the table including rare ones.
• People with LFS can have cancer multiple times in their lives and even multiple different types at the same time.
• LFS is the gift the keeps on giving, you have 50%-50% chance of passing it off to your children, and unfortunately it can affect them more severely hence there are a lot of pediatric cancers with this syndrome.

I’m going to try and explain how LFS works as best and simply as I can for those who are curious. Essentially we’re missing one of the two TP53 gene that everyone is born with in all their cells. Think of TP53 as the two bouncers at the door who make sure the club doesn’t get too crazy and kicks out the trouble makers. The club being your body and the trouble makers being cancer, when you’ve only got one bouncer working the door, if he gets easily distracted or anything too rowdy goes down he can’t control the crowd therefore cancer develops. This of course is an oversimplification of things and also there are many other facets involved not yet known.

Roughly they believe this scenario is how cancer develops in normal people, the difference being that in normal people its only in one particular kind of cell in one particular part of their body aka lung cancer, breast cancer etc. For people like us with LFS, this can happen anywhere because like I mentioned before we’ve only got one working TP53 in all the cells of our bodies. There are some people who are mosaic meaning its only in certain cells in their bodies but thats a story for another day.

LFS unlike BRCA 1 or 2 (the Angelina Jolie mutation) doesn’t have to be inherited, unfortunately it can be a new mutation (de novo) that starts off in just that one person either due to a defective egg or sperm, or something went wrong during embryogenesis. Which means they have no family history of the mutation hence they have no idea they have LFS unless something happens like they get cancer at a young age or develop a rare cancer etc.

So to make this post even longer, this is why I had a prophylactic double mastectomy to try and lessen the cancers I can get. Of course by the time we’re 40 we also have to do a hysterectomy to reduce the chances of ovarian and uterine cancer etc. Essentially they want all the lady parts, all of thems I tells ya, hahaha.

Its been about a year since we’ve known this so its easier to deal with and make jokes of course. Also like anything else, you have your good days and your bad days. Alright I think this has gotten long enough.

After my first surgery about 10 months ago, my plastic surgeon decided to make me asymmetrical so that when I had radiation, things would even out. I’m not sure how that works. But, that last minute decision on her part made things extra awesome for me when I didn’t need radiation after surgery.

I knew going in that reconstruction isn’t a perfect science but no amount of mental preparation could give me a sense of what this is like. I’m starting to understand why people who have reconstruction surgery usually have many surgeries. No one really explains how it’s an iterative process. It’s like having surgeries to go through puberty in your boobs.

I hadn’t thought of my boobs or chest so much in my whole life. I realize now how much I took them for granted and underestimated what it takes to get something of equal or greater value.

It’s still early to tell whether the asymmetry is better. I am much happier with this second round of implants. I was naturally a DD and the first surgery left with me with the equivalent of a full B or small C cup. As much as it was nice to have a smaller size, it didn’t look right—at all.

The challenge with implants being used to replace a natural breast is that an implant can’t replicate the inner-workings of  a breast. For woman having augmentation, their breasts have tissue and the implant is adding to it. The implant doesn’t have to fill the volume and mass of a breast as it does for a mastectomy patient.So, for woman with reconstruction, you have boobs, but you lack the profile or projection of a natural boob or cleavage.

Luckily, anatomical implants which are what I have now, these help with both projection and cleavage. But, it’s still nowhere near to what I had. I’m aware of how much my big boobs offset my tummy. A bigger chest gave me a  better boob to gut ratio. I’m sure tamoxifen isn’t helping me in the tummy department.

Recovery this time around has been brutal but I don’t have drains. So, that’s been sweet. My sister’s double mastectomy is coming  up in a couple of weeks. I have to say, she has huge lady balls. I had cancer and really didn’t want to go through surgery. She is having surgery as a preventive measure. I feel that’s a much tougher call to make.