My Version of Breast Cancer 101

Monday, October 28, 2013

I can't start without first thanking everyone for their amazing support after our first post about being diagnosed with breast cancer. Although this is an incredibly tough time for us, we feel so loved that it's hard to even describe in words how grateful we truly are. Between the phone calls and emails and texts and care packages, not just for us, but for Emma and Jack, the support has been amazing. I don't think that I'll ever be able to express what it all means to us. So truly, from the bottom of our hearts, Wes and I thank you so very much.

It has absolutely made a difference and will forever be in our minds.

Last week was really, really good. Up until Friday it seemed like any other normal week really. We were back to our same routine. Get the kids up, go to school/work, come home, cook dinner, bath time, snuggle time, bedtime, etc. It was back to all seeming like it was just a bad dream. I don't know what it was about Friday that made that day different, maybe I was just tired from the week, or maybe I was just run down from trying to go on with normal life, when it reality, it really wasn't normal. It was like being Eeyore for the week, but without all the sadness. We were feeling pretty positive (especially with all the love we were getting from friends and family). But there was just this gray, gloomy, raincloud following us around all week. On Friday, it just seemed to finally catch up to us, and rain.

Although we had heard about the final biopsy reports during our last set of appointments, I finally saw a copy come through early Friday morning. Right to my Inbox. Maybe it was just seeing all those words again. Those words that we had tried to forget about for a few days. Maybe it was just that it caught me off-guard and I just wasn't mentally prepared for it. Who knows. But for some reason it felt like getting the news all over again.

Infiltrating and In Situ Moderately Differentiated Ductal Carcinoma

It felt like I got hit by a truck. Again.

All day, I couldn't get those words out of my head. Here's the kicker. Even though the surgeon had explained most of it to us the previous week, I still didn't understand what most of it really meant. That made for a pretty rough Friday. I was pretty beat when I got home and just overall wasn't feeling so hot. Thank goodness for Wes. He has certainly carried the burden for the last couple of weeks and I don't know what I would do without him.

After getting that rough day out of my system though, I decided to use that biopsy report to learn a little more about what we were facing. To teach myself. I'm an engineer. I like data and I didn't understand the data I had so far. If I understand the data, I feel better about solving the problem. So, I figured since I didn't really know much about cancer at all, why not share what I learned so far too. I'm sure there is a lot more to come, and I know there is a lot more that I can learn. But here's my version of Breast Cancer 101...

Infiltrating and In Situ Moderately Differentiated Ductal Carcinoma

Sounds gnarly right?

Yeah, I thought so to. Here's how you break it down...start from the right, and move left....

Ductal Carcinoma: Simply put, it's a type of cancer that starts in the milk ducts of the breast. There are two different types, Ductal Carcinoma In Situ and Invasive Ductal Carcinoma.

I was diagnosed with both.

Ductal Carcinoma In Situ (DCIS) is the most common type of breast cancer. "In Situ" just means "in it's original place". So it's cancer that is noninvasive and has stayed put. It hasn't yet made it to the breast tissue and it's pretty much the earliest stage that breast cancer can be, Stage 0. This usually doesn't form a lump, but is found about 80% of the time through a mammogram, which will detect tiny bits of calcium that develop in dead cancer cells.

Typically, DCIS is treated with a lumpectomy and radiation. The risk of lymph node involvement is pretty small here, so the lymph nodes under the arm aren't usually removed.

Invasive Ductal Carcinoma usually develops in the same breast and around the same place where the DCIS first occurred. It's similar to DCIS in that it also begins in the milk ducts of the breast, but it doesn't stay contained there. Instead, it grows through the duct walls into the breast tissue. This is the kind that can more easily spread to other parts of the body. This is the type of cancer that causes a hard lump to form.

In addition to surgery, most doctors will recommend treating invasive ductal carcinoma with chemotherapy, hormone therapy, radiation therapy, or a combination of all of these treatments. Chemotherapy and endocrine therapy are systemic treatments, which targets cancer cells throughout your entire body, where radiation focuses on the specific area. The use of radiation depends on the type of surgery you have, the size of the tumor, whether it has spread, and the if the lymph nodes are involved.

So for me, I have one spot of invasive cancer (which is the lump I found) and then a more wide spread area of DCIS. My Invasive (or Infiltrating) Ductal Carcinoma was also given a grade assessment of Nuclear Grade 2 (which means moderately differentiated, or intermediate grade). Still trying to figure that part out though.

Estrogen and Progesterone Receptors: Estrogen and Progesterone receptor status tests show whether or not one or both of those hormones fuel a tumor. Cancer that is hormone-sensitive is slightly slower growing and has a better chance of responding to hormone-suppression treatment, than cancer that is hormone receptor negative.
My results showed that my cancer was Estrogen Receptor Positive (ER+), which means that estrogen is causing my tumor to grow, BUT the cancer should respond well to hormone suppression treatments.  
Ki-67 Proliferation Index: Ki-67 is a cancer antigen that is found in growing, dividing cells but is absent in the resting phase of cell growth. This makes Ki-67 a good tumor marker. High levels of Ki-67 indicate an aggressive tumor. 
My Ki-67 Proliferation Index was 10%. which I think is a good thing! 

So there you have it. A very high level, probably boring, breast cancer 101. 
Our surgery date is currently set for Monday, November 18th. So until then, we are just going to keep filling up our weekends with family pictures in the park, princess practice and hot chocolate with rainbow marshmallows to warm our bellies.


Tuesday, October 22, 2013

That's the day that I was officially diagnosed with breast cancer.

I know. Not what you were expecting right? That makes two of us.

I don't even know where to start with this. I went back and forth on if this was something I should share, not share, how much to share, etc. The decision wasn't a difficult one for me, certainly with respect to some of the other decisions we have made in the past week and a half. It's important for me to share our new journey for a couple of reasons. One of the best things that I did when I was going through Postpartum Depression, was open up and share my story through my blog. The support that I got was unbelievable, and this has been 10 fold compared to that already. The amount of love and support that Wes and I have received over the past couple of days has been nothing short of amazing. Blogging about my Postpartum Depression also made a world of difference to me personally on the tough days. I would go back and read the posts on the good days, and it was an immediate lift and reminder of all the blessings that I have in my life.

The biggest reason that made it an easy decision for me was because I want to share our upcoming journey for all of my family and friends that are around the same age as I am, and for all those people that were like me, and didn't really think twice about breast cancer. I'm 33 years old. I have little to no family history of breast cancer, and really, cancer in general. I had no symptoms. In all honesty, I never thought about breast cancer. I am too young for it to affect me. Or so I thought.

Before I begin telling you about our last week and a half, I have to say that Wes and I will be forever grateful to our amazing family and friends that have been with us so far in this. We know that their support is unwavering, and that we certainly won't be going through this alone. Not by a long shot.

Obviously this is a big surprise, just as it was to us when we got the news. It's hard to try to describe what that felt like for us. I immediately felt alone after hearing that I most likely had breast cancer. Which was odd because I wasn't alone. Wes was right by my side, and has stayed there this entire time. It was just that I knew no one that had gone through this. I didn't know who to talk to. I didn't even know what questions to ask. I had no idea where to start. I was angry. Very angry. I didn't understand. I have two beautiful children. This couldn't be happening. I'm perfectly fine. I felt no different then the day before. Little did I know about all of the amazing people that I was about to meet, that would help us navigate through probably the toughest week of our lives, and no doubt, will help us navigate the toughest fight of our lives.

We have been incredibly lucky when it comes to cancer in our family. There is little to no history, which is one of the reasons why this was so shocking initially. I had no signs or symptoms up until last Wednesday, until someone up in heaven no doubt led me on the path to finding a lump.

On Wednesday, October 9th, Wes and I were just getting ready for bed after a pretty good day. I had a pretty big meeting at work that day, so I was pretty tired, but given I have a four year old and a two year old, that's pretty much how I feel all the time. It was a typical day in the Odom household, one which I certainly took for granted. I was snuggled in bed first (like usual) and Wes was in the bathroom getting ready and not too far behind me. I had the slightest little itch on the top of my left breast, almost more on my chest. It felt like a piece of fuzz or something had just landed on me. I went to give it a little scratch and immediately felt a decent sized hard lump. It immediately took me by surprise because of the size and how hard it was. I couldn't figure out how long it had been there, because wouldn't I have noticed something like that? I immediately told Wes, had him feel it, and he agreed it wasn't normal. I tried not to dwell on it too much that night because who knew what it could be. Obviously it could be breast cancer, or it could be nothing. Little did we know how our "normal" was about to change.

The next day was back to work, nothing much different outside of a lot of phone calls. I didn't even really know which doctor to talk to, or really even where to start. I ended up getting an appointment for Friday with my general doctor's office's physician's assistant. I wasn't too keen on that since I wasn't sure how much "pull" he was going to have to get me in somewhere else if I needed it. Then, after a very frustrating round of phone calls to my OBGYNs office, I finally got an appointment for bright and early Friday morning.

I was originally hoping I would get to see someone on Thursday, but no such luck so I decided to head downstairs at work to our onsite nurse. She is always pretty amazing and kind of famous around here for bringing her "fake boobs" to staff meetings and making people feel them so they know what to look for when doing self exams. Even the males. It always seemed kind of funny and pretty embarrassing, at least until now. She gave me an exam, agreed I should get it checked out, gave me some information and sent me on my way. It wasn't until I got back to my desk that I got nervous. I had an email waiting from the nurse and this is what the first sentence said...

"This is just a curve in your life’s trail.  As women, we are strong and can handle anything! Put EVERYTHING else on hold if you can and take care of YOURSELF- be selfish, do want you want, and everyone else takes a back seat for now, including WORK."

Insert panic here.

I couldn't help it but did some Internet searching that night at home. For once, it actually made me feel better because there was a lot of information on cysts, and how they can often feel hard even though they are filled with fluid, and how they can change in size depending on where you are in your cycle, etc. I was just about to hit my monthly date, so it all seemed to make perfect sense. I was still a bit nervous and knew that my mom would basically kill me if I didn't tell her about something like this so although I was hesitant (because I KNEW she wouldn't get any sleep and would worry all night) I made the call to let her know what was going on. I think I even bet Wes before I called, that she would be going to the doctor's appointment with me the next morning no matter what. And she sure did. Thank goodness.

Still trying to convince myself that it was nothing but a cyst I headed to my doctors appointment on Friday, October 11th. After another exam, I was quickly being signed up for a mammogram and ultrasound as soon as possible. I kept asking questions like "Well, can you tell if its a cyst or not just by feeling it since some can be soft and some are hard?" A quick, direct and very decisive response of "That's not a cyst" was my first clue this was about to be something different. There was just something about the look on my doctor's face and his tone of voice that was incredibly unsettling. Slowly but surely the walls started closing in at that appointment. After getting dressed and heading to check out, I was incredibly nervous. It wasn't "Okay, go call here and make an appointment and then go here and get this done" it was more of "Okay, wait here while we call and get you an appointment as soon as possible. Do you have a surgeon that you see?" A much faster, more aggressive follow up then I was expecting. People were wishing me good luck as I was walking out.

Immediately when I saw my mom as we were leaving, I burst into tears. There are a couple of parts that are a blur with this whole thing, and this is one of them, along with standing at the check out desk of the OBGYNs office. People kept coming and going, they kept putting people on hold for me. Both my mom and I talked and cried in the foyer of the doctors office and I didn't know where to go from there. I immediately called Wes, cried again, and went to work. Thank goodness it was a big day at work and we had a big delivery to a customer that day. It was the best distraction that I could have had.

By the time I left the doctors office that day, I had a Tuesday early afternoon appointment at a local Radiology center. Come to find out late that afternoon, they weren't covered by our insurance. Ick. Because this whole thing just couldn't be easy. So back to the phone we went but I think ultimately it was another sign from up above and someone else was guiding me to where I should be. I ended up getting an appointment at a John's Hopkins imaging center that we had been to before. It's right downstairs from Emma and Jack's pediatrician and our general doctor. After they made a few phone calls for us, we had an appointment for 10:00AM Monday morning, October 14th.

The weekend was another blur. I don't remember too much about it outside of going to a Birthday party on Sunday morning for some of the kid's friends from school. Worked out great because it was for two sisters, the older one who is in Emma's class at school, and the younger one who is in Jack's class at school. Perfect. No one had to be left at home which is ALWAYS a battle when it comes to Birthday parties. It was a blast. The kids had a blast. Little did I know, the next day I would be praying and wishing that I could rewind time to get back to that party, and back to when things were"normal" again.

What's so odd, is that we were about to start probably the longest week of our lives, but looking back, it seems like it all happened in the blink of an eye.

The kids were thrilled on Monday morning because both Mommy and Daddy were going to drop them off at school. The radiologist was really close to school, so after dropping them off, Wes and I grabbed a quick bagel at Panera Bread and it was off to the doctors. First up was the mammogram.

By the way, if you are still reading this, you should get a prize. No really. So much for a quick summary of last week. :)

This was my first one. Ever. Rightfully so right? You start having them at 40 right? So why was everyone asking me and sounding surprised when I said this was my first one? I started to get really nervous here because after the normal set of images, the technician kept coming back and saying things like "He just wants one more close up shot of this..." or "He just wants one more wide shot of this...." The images started to focus on other ares where there was no lump. That's when I started texting Wes who was out in the waiting room that I was getting scared. I remember sitting in the tiny little waiting rooms in the back, that just had a small bench, with a curtain in the front and a basket of magazines. It was like the staging area for the mammograms. I could see the other women waiting for their turn, but they were all now behind schedule because of me. I kept hearing my technician talking to the other technicians saying "Julie, can I do one more before you get in there? He wants one more again." I heard that about three separate times. That's about when time seemed to stop. Something wasn't right. This wasn't a cyst. I knew it. I remember looking at the other women waiting for their turn, patiently skimming the magazines. All I could think was "I don't belong here. I'm too young. This isn't real." I finally got the okay that we were done with the mammogram (which by the way, compared to what The Squishy does every morning in bed with punches and kicks and elbows was a walk in the park). Next was the ultrasound, so off in my little gown to the ultrasound room.

It wasn't long before the radiologist came in, with what seemed like an army. In reality, it was only two nurses, but it seemed a bit much for just a little ultrasound. This is where our world started to fall apart. His first words were "What I see is very concerning." Those words are now burned into my brain. Maybe it was the look on his face. Maybe it was just the way he said them. I immediately started crying because I knew. I just knew. My chest got tight, and it got hard to breath. I immediately stopped him, and somehow muttered "Please get my husband. I need him." The teary eyed nurses immediately left to go get him. I remember before Wes came in, just yelling out "I have two small kids!!!" Like, it was going to change something. Like, if I tell the radiologist that, he will say that there must be a mistake. Because you can't have breast cancer if you have two small kids, are only 33 years old and have zero family history of it. It just couldn't happen.

This was another blurry moment. Wes was standing behind me. I don't remember much of what the radiologist said, other than certain phrases like "invasive cancer", "calcifications", "wide spread", "very concerning", "lymph nodes". I didn't know much about cancer, but I knew that if he was concerned about my lymph nodes that meant a whole other level. He then performed the ultrasound with the nurses watching and helping. Lights up, lights down. Measure this, measure that. Raise this arm, raise that arm. Roll this way, roll that way. I don't remember when it was we were told, but the next step was an immediate biopsy of both the lump and the lymph nodes in my left armpit. They wouldn't be ready for the biopsy until noon, so they showed Wes and I to a private room to wait. The nurse couldn't close the door soon enough, and we immediately broke down and just held each other. I just kept saying "I'm sorry. I'm sorry. I'm so sorry." Wes asked me why I kept saying that I was sorry, and at the time I couldn't bring myself to answer him. But it was because my first thought in that room was that he was going to be a single father of two young children because of me.

We didn't know what to do. We didn't know who to call. I couldn't call my mom. I just couldn't be the one to tell her that kind of news. I called my dad. I didn't know what else to do. I knew that he would know what to do. I felt AWFUL calling him at work. Who wants to get that call at all, let alone at work? But I knew that out of anyone, he would be the one strong enough to break the news to my mom. Not that it certainly wasn't a blow to him. I just knew he would never let me see it effect him. He's just that kind of guy. He's the rock. I don't think Wes knew what to do either. Eventually it was time for the biopsies, where Wes went outside to call his parents. I'll never forget the look on Wes's face that day. And it was all my fault.

I also knew that I couldn't be the one to break the news to my two brothers. I just couldn't.

The biopsies really weren't that bad. I remember laying there thinking "Man, this is easier then getting a cavity filled at the dentist." I couldn't look at the ultrasound screen because it was guiding the biopsy needles. I didn't want to see the size of whatever it was they were shooting at. All in all, both biopsy's took a total of maybe 45 minutes. We then got shuffled back into our little waiting room when it was almost like being right back at the OBGYN's office where they were rushing around making calls to make us appointments. We didn't hesitate when they asked us if we wanted to stay with John's Hopkins. That's pretty much a no brainer. Although it would be 48 - 72 hours until the final biopsy results came in, we all knew what the results were going to say when they came back. I had breast cancer. So the team was proceeding accordingly. The only questionable part, was the lymph nodes, and what the results would say about those.

I don't remember much of the rest of Monday outside of my parents coming up. I wasn't sure how we were going to get through the day with the kids. I wasn't sure what I was going to do or feel when I first saw them. I immediately wanted to keep life as normal as possible for them, which was bound to be impossible that night. There was a lot of crying that night whenever we were away from the kids. There was pretty much no sleep what so ever. But the next day was the pumpkin patch.

We had been talking about the kid's field trip to the pumpkin patch for weeks, because Mommy was supposed to be a chaperone. I didn't know what to do. I didn't know if I could keep it together. We were waiting for multiple phone calls to set up appointments with surgeons. Eventually I decided that if normal was what I wanted for the kids, then normal it would be, no matter how tough it was, and on Tuesday off we went to the pumpkin patch. But it wasn't before a major breakdown in the shower for me, and then not ten minutes later, a major breakdown for Wes. We tried to keep it from the kids as much as possible, but they heard us both. I told them Mommy was crying because I stubbed my toe in the bathroom. We finally made it to the pumpkin patch, tear free, and it was the best thing I ever could have done. I needed that. It was the perfect day.

Tuesday night I was worn out. I felt like I got hit by a truck, emotionally. And I slept like a baby.

Wednesday, the 16th, exactly one week from when I felt the lump, was probably the best day that we had since it began. It was a "normal" morning. We craved "normal" at this point. We needed "normal". We knew what phone call we were going to get, but we knew what it was going to say. At least we thought. We went back to work. We had appointments scheduled for the next day, bright and early with some of the leading doctors at John's Hopkins. A breast cancer surgeon (for lack of her full fifteen titles that she carries) and a plastic surgeon. We also knew we were going to see the radiologist that we had seen on Monday pop in and pop out. We eventually got the call with the official biopsy results on Wednesday evening. It was the radiologist. I was officially diagnosed with breast cancer.

At the same time though, we shed happy tears, because the biopsy of the lymph nodes was negative. We immediately called and texted and spread the good news. Up until this point we hadn't told many folks outside of our immediate family, because we didn't know what to tell them. It was almost a relief that we had the official diagnosis because every time we told someone, the amount of love and support we got in return was indescribable. We needed it. Every little bit.

All I could think on Wednesday night was that, it was kind of odd that the phone call you get confirming you have breast cancer is also the best phone call you got all day. All because of the lymph nodes. I didn't have much time that day to get too nervous about our appointments on Thursday morning, but boy did that sure change when I woke up Thursday.

Thursday was an early morning, which was good because I wasn't about to get much sleep after 5:00AM anyway. Mom was coming up to help us with the kids and get them to school and Dad was meeting us at the hospital. We knew it was going to be an emotional day so we needed that rational person there along to help and listen. Wouldn't you know he came with a note pad. So perfectly him. We had to be there at 7:30AM sharp. I was nervous, really nervous. I was tearing up and shaking while checking in. I could barely think clearly enough to fill out the 4,357 papers. Up until this point it had been such a whirlwind and our minds were so busy trying to wrap themselves around the thought of it just being cancer in the first place, that we hadn't even had time to think about the surgery itself. Based on what we heard from the Radiologist, a lumpectomy wasn't going to be an option, so we were headed right for a mastectomy.

We ended up meeting with two surgeons that morning, a breast oncologist surgeon and a plastic surgeon. The hospital was great like usual (they had always been amazing with Emma and her VUR) and was able to schedule both for us on one day so we didn't have to come to two appointments. the plastic surgeon was actually booked that day, but was able to squeeze us in right before we met with the oncologist surgeon (which we heard was typically a little backwards). We were grateful though to get to speak to everyone in one trip. What the Radiologist had said three days before ended up being the consensus and a lumpectomy was pretty much taken off the table from the get go. It was up to us what we wanted from there. Single mastectomy or double? Reconstruction or no reconstruction? What type of reconstruction? Because of all the family members that read this I'll spare you those details for now, at least on our choice of reconstruction, but ultimately I decided on the double mastectomy. We will hopefully hear sometime this week on when the surgery will actually happen, but it usually takes about 2  - 3 weeks to coordinate all the surgeons and pathologist who will all be in the room at the same time.
During the surgery, they will also perform a sentinel node biopsy (oh and by the way, the surgeon that I was assigned to is the surgeon that introduced that method to Johns Hopkins in the 1990s, so yeah, can't beat that). A sentinel node biopsy is basically a biopsy of the first lymph node draining a cancer (i.e. usually the closest node to the cancer). They will remove that node and perform additional testing to ensure its still cancer free. During the surgery, the pathologist will be on hand to inspect the node as well. If things look questionable, they might go ahead and remove a few as well. About a week after the surgery, we will get additional test results back from the pathologist and will then be able to determine what/if any treatments will follow (chemo/radiation/hormone).

So that's pretty much where we stand as of today. We are waiting on the phone call to let us know when we have been scheduled for surgery, but until that date, its life as we know it.

Last week was incredibly hard, but we have been doing pretty good I think. There are good days and bad days, but most of the bad days came before we truly knew what we were dealing with. Thursday was pretty tough as it was the first time I really got to see and hear how my body was going to be affected. And it was a shock. It's different to just think about whats going to happen, then actually see pictures of it. It was very much like drinking from a fire hose with all the details and information, but I don't think that I could have a better team! Now that we have a better idea of what’s going on, I’m actually feeling pretty positive (and trying to stay that way, especially for the kids). We know what the first step is, so we are going to take care of that and then worry about the rest when we get there! We wouldn't have been able to get through this past week and a half without the incredible love and support that we have received from EVERYONE.

Failing and letting this beat us is absolutely not an option. It's just not. So Wes and I are going to do everything possible to make sure that doesn't happen, which includes staying positive, healthy and strong. Not just for our Emma and Jackson, but for each other. This won't break us. I won't let it.

It's just another bump in the road.

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