The Dream Team Part 2- Dr. Jaco Festekjian

The other half of the mastectomy/ reconstruction dream team (or the bad cop/ good cop duo as I like to call them) is my plastic surgeon, Dr. Festekjian. Let me just say now that the man is a genius and does some pretty incredible work. I honestly couldn't have asked for a better plastic surgeon. He has quite a bit of experience with preventative cases like mine and has worked with quite a few patients who are on the younger side. Again, it's like I got a custom-made surgeon. You can learn a little more about him here.

The Process of Reconstruction

During my first appointment, Dr. Festekjian explained that there were basically two options for reconstruction. The first option  is to insert expanders under my chest muscle and gradually fill them up with saline to fill up the envelope left behind by the breast tissue. This would require regular visits to the office to have more saline injected in until I reach an appropriate size and they will be switched out 2.5-3 months after that for permanent saline or silicone implants. Unfortunately permanent doesn't exactly mean forever. These "permanent" implants need to be changed out every 10-15 years with a relatively minor outpatient surgery. If a nipple-sparing mastectomy is chosen (which it was), reconstruction ends here. If the nipple is sacrificed, some pretty nifty tattoos can be used to reconstruct the nipple and areola once the permanent  implants are put in.

 The other option is to use excess fat around the abdomen to reconstruct the breasts. I've read that this option feels more natural than the expanders and you can potentially come out of the mastectomy completely reconstructed (assuming you elect immediate reconstruction). All veins and things like that are sewn together once the tissue is in its new home and the breasts will grow/shrink accordingly with gains or losses of weight. Nothing has to be replaced either. I think the process of reconstructing the nipple is the same as with the expanders, but don't quote me on that one. The only downside to this option is that it does mean a longer surgery and another scar which means a slightly harder recovery (but you basically get a tummy-tuck out of it, which I guess is the silver-lining). This option is also not available to everyone. The surgeons have to asses age, size, and other variables to determine who would be a good candidate.

 One look at me and both Dr. Karam ad Dr. Festekjian were convinced that the second option wouldn't be available to me (apparently the freshman 15 didn't go as far as I'd thought), so expanders it is!

 

This is basically what the expanders look like. Note the little pump-like thing through which the saline is injected. Don't worry, this is all inside after surgery.


This is basically what the second option looks like

The 7 Stages of Grief For the Loss of Breasts- I took the liberty to add a few to the traditional 5

After hearing the news that the girls are going to have to come out, my world was turned upside down. I was upset, confused, and just plain sad. Major props to my hallmates and friends for putting up with me that day when I came back. It was a huge help. Gotta give my parents credit too for listening to my tirades. So without further ado,

The 7 Stages of Grief For the loss of Breasts

1. Denial- "Man in the white coat said what?!" "You have got to be kidding me. Please tell me this is some kind of sick joke and there's a hidden camera crew around here somewhere."  These are both things that ran through my mind when I first heard the news. It's natural to not want to believe the news. It's the absolute last thing I expected to hear. I spent most of the time immediately after the news in this stage. I couldn't believe it was me saying the words "I need a mastectomy". It finally hit me that this was now reality and I can't say it was fun.
2. Dazed Confusion- Once the reality of the situation hit me, the shock still hadn't worn off. I was aware that the surgery was going to happen and continued to go about my day, but it was quite the out-of-body experience. My body was in class, but my mind was on the news I had just been given. I wasn't too aware or alert to what was going on around me. This continued until I had completed my responsibilities for the day and had time to collect my thoughts.
3. Anger- Don't worry, any and all anger was appropriately channeled toward the psych test I had the next day. But once I did collect my thoughts, I did become upset about why this had happened to me. What had I done to deserve this?! Venting proved to be a pretty successful method to passing this stage.
4. Bargaining- Now the statistics I had been given didn't leave much room for bargaining, but who's to say I couldn't try right? I constantly thought "there has got to be another way to do this". I contemplated the option of simply continuing my screenings as planned, but the more I contemplated the more I knew I couldn't make that choice. I didn't want the mastectomy, but all this continued tossing around of options showed me I had no choice.
5. Depression- Cue the sad music and comfort food. I simply didn't want the mastectomy, but I knew I had no choice. How could I possibly be happy with a surgery I don't even want?! What's the point?! Nothing seems important anymore. As good a job as the next day's psych test did of snapping out of this, encouragement and reminders from loved ones that this was to save my life really helped me to find meaning in the unwanted surgery.
6. Cry, Cry, Cry, Cry and once you've done that cry some more - This is where the emotional teenager in me took over. This seemed to be an accumulation of everything that had crossed my mind and every emotion I felt in the process. I cried about nothing, but at the same time I cried about everything. A good tip I've learned about grieving is to let yourself cry until you can talk about it without tearing up. It really helped clear my mind and think clearly about what was ahead.
7. Acceptance- Now, signing the consent form is probably just the beginning of this stage. It definitely was for me. It was the reality check that this was really going to happen, but it was ok. My plastic surgeon giving me an idea of how I would look more-or-less afterward didn't hurt either.

The Dream Team Part 1- Dr. Amer Karam

Now before anyone gets too excited and wants to book an appointment, Dr. Karam has recently moved to Stanford and is doing some pretty amazing work there. Stanford, count your blessings. You've got one of the best docs out there. I guess this kind of speaks to how blessed I was to have such a great surgeon. It seriously was as if God had compiled a list of everything I could have possibly needed in a doctor taking care of this part of my health and sent someone to med school to become that doctor/ surgeon. You can check out his pretty impressive résumé here. For those aspiring to enter the world of gynecology or gynecologic oncology more specifically, the bar has been set- high. Ok I'll stop bragging now (did I mention STANFORD?!).

The First Appointment

So I guess the day I had always intended to put off into the WAY distant future, had to come a little early. It was the day that I stepped into UCLA's OB/GYN suite for the first time. Because of the risk of breast cancer, the genetic counselors referred me to Dr. Karam, a gynecologic oncologist, in order to begin surveillance for any suspicious signs of early-onset breast cancer.

This was the day that I heard the words "preventative mastectomy" for the first time, especially in the context of my treatment plan. There were still a lot of things that needed to be thought out, and balancing my breast cancer risk with my other health issues proved to be quite the juggling act. That being said, once I heard that the mastectomy didn't need to be performed immediately it became pretty easy to push this to the back of my mind in lieu of other screenings that were more necessary. I did have my first breast exam that day, which pretty much showed me I had no idea what I was doing with my own "self exams" (I highly recommend asking the pros how to perform these self exams correctly). All in all, this is pretty high up on the list of most emotional and brain-frying appointments I've had to date (and trust me, I've had a lot).

The Decision
Fast-forward six months, and I'm back for my second bi-annual professional breast exam. Now that all the immediate tests had been conducted, we had a better picture of where my health and risk stood. The focus now shifted to the breast cancer risk. I heard those words again "preventative mastectomy", except now I could really tell that Dr. Karam was serious about this.When he mentioned an 80-90% risk of developing breast cancer before age 30, I saw  I really had two options: 
1) have the prophylactic (preventative) mastectomy now
2) get breast cancer and have the surgery with possible chemotherapy later

It was pretty clear which option I had to choose


Why Now?!
If you're wondering why I made the decision to do it now, I basically asked myself why NOT now. If you would like to see the bullet-point list of my though process and why I recommend it to any young woman who is at high risk, here it goes

1. First and foremost, I don't have cancer- yet. Having a mastectomy prophylactically really opens up the options for both me and my surgeons. It gives me the best shot at the most normal result.
2. Yes I'm 19, but that just means I jump back from surgery that much quicker and can recover that much more easily.
3. I don't have a family to take care of yet, so my energies aren't torn between taking care of a family and taking care of myself.
4. I have no other responsibilities. I can more easily take time to recover now before I gain the responsibilities of work and graduate studies.
5. I can mooch off the parentals a little while longer (every college-student's dream). As much independence as I'm just starting to gain at this point, there is no better nurse than mom.

and with that, my decision was made and I was off to start the process of my medical leave for recovery.

What Li-Fraumeni Means for Me- The Genetic Counseling Session

The ritual of the Genetic counseling session seemed pretty straight-forward. We sat in the same little room we had sat in 12 years prior when I was diagnosed with Turner's Syndrome (so I don't confuse anyone, this condition isn't related. I'll probably dedicate a post to it later just to clarify what it is) and were told by the same doctors what this new genetic mutation means for me. Here's roughly what they said

The Bullet-Point List of What Li-Fraumeni Means for Me:

• Elevated risk for developing soft-tissue cancers at an early age including...
• skin cancer in general (not sure if this counts as a soft-tissue cancer, but seeing my dad's history I was basically told to go home and bathe in sunscreen.... meh)
• osteosarcoma (a bone cancer that usually occurs in children. Checking with the docs on that one)
• brain cancer (before anyone freaks out, I'm still checking numbers and statistics with the docs on this one as well)
• and BREAST CANCER (starting to make a little more sense now?)
• Annual MRI's starting when I turn 20. Other forms of surveillance aren't really an option because of the radiation.
• Regular appointments with various specialists, and trust me there are a lot of them. After 19 years of health issues, it's a pretty safe bet that if you mention a specialist I'm probably either seeing one now or have seen one at some point.

and with this, I'll start to explain the process of making one of the biggest decisions of my life.

Background

I'm assuming some of you are probably wondering what I have been up to for the last few months with the random posts of me in the hospital and the breast cancer awareness posts, so I guess I got some 'splaining to do (cue the Ricky Ricardo accent)



The story is pretty complicated and it's hard to explain how this all ended in my breast cancer awareness frenzy, so some background is definitely necessary.

How it all started
The story starts back in 2011 at one of my dad's dermatology appointments at Cedars- Sinai  (which I never go to by the way. I really don't even know how I ended up at this one). You may or may not know that both my parents have fought cancer and are proud survivors (more details to come later), but this particular appointment was for screening that became necessary after my dad's multiple cases of skin cancer (among other kinds). He was seeing a new dermatologist that day, so that meant re-telling my dad's personal cancer history that we have all come to know by heart at this point and reciting the family history of cancer that's longer than the Great Wall of China


ok, maybe it's not that long


After a few moments of listening to our spiel, the resident (maybe intern. Either way he looked fresh out of med school)  asks if my dad had ever seen a geneticist to get tested for something called Li-Fraumeni syndrome. He described that this condition was characterized by the deletion of the p53 gene, a tumor suppressing gene that often resulted in multiple repeated cases of cancer as well as a long family history of cancer. We had never heard of this in our lives (neither had the attending dermatologist), so after a little research my dad was sent off to the lab to get tested.

The Wait... and the Answers
The wait was long and hard, but the results were soon upon us and... he had tested positive. After some more research, we learned that basically what this diagnosis meant was that not having this tumor-suppressing gene had made my dad INCREDIBLY susceptible to developing different kinds of early-onset soft-tissue cancers. It explained why he had developed one of the most rare and lethal cancers in his mid 30's and why subsequent CT-Scans for screening had caused him to develop multiple cases of skin cancer. After the shock wore off, it was highly recommended that my brother and I both get tested.

The wait: Numéro 2
After much insisting on my mom's part,UCLA agreed to test us and the wait was on. Those were probably some of the longest two weeks of my life. Knowing that my dad had the mutation meant that my brother and I both had a 50/50 shot of having the mutation, which only made the wait longer. My mom and I were at UCLA a few weeks later for one of my regular cardiology appointments, and with just one look at another one of my doctors who happened to be walking down the hallway my mom knew... the results were in. We approached her, and of course she had our results in her hand (pretty impeccable timing if you ask me). She said there was good news and bad news. The good news was that David had tested negative (yup, you can breathe a sigh of relief for the now 10-year-old who practically lives in the sun), but I had tested positive. After letting the shock sink in of finding out this news in the hallway (as opposed to the traditional genetic counseling session where news like this is usually given), we were off to the genetic counselors.... again.


Aaaahhh... UCLA 200 Medical Plaza, my home away from home for the last 19 years. I've recently come to realize that I've been treated on every floor of this building now #sickkidproblems