Lumps and Bumps

Hello sweet sweet friends! So for those of you that are just stumbling across my little blog this is part 2 of the back story of my BRCA2 diagnosis. If you missed Part 1 you can read that here. For you to understand my story moving forward you need to know how it all began.

So like always, get comfy and grab a cup of Joe, we may be here for a bit. :)

Part 2 - lumps and bumps and tears, oh my!

Fast Forward 15 years from the confused 14 year old girl who just lost her dad to Pancreatic Cancer to the 28 year old me. The me with 3 kids, a husband, a house, a life.

 I had started researching pancreatic cancer a few years ago after hearing a news report, I couldn't tell you what station or even what was in the report but I remember vividly it being said that research was supporting that Pancreatic Cancer could possibly be genetic.

Wait, what?

It had never crossed my mind that it would be a possibility that my sisters or I could get this deadly Cancer. Even if it was likely, people in their 20's didn't get cancer, no way. Wow, yup, this is how my brain worked. I mean, sure, I worries about my kids, myself and family getting sick, getting hurt, but I always ended up with, "that will never happened to me (cross my fingers, hope to God)?! I knew logically that people of all ages get sick, have accidents, die, but like anything else scary I pushed this morbid thought of having the same nasty cancer my dad died of just 15 years earlier, out of my mind and continued on with my life in my perfect little bubble.

That is until June 2014.

It was the day my first niece was to be born, June 9th to be exact. We had just laid eyes on that precious baby girl and my youngest sister was finally hungry after enduring a c-section. She, of course, wanted Mexican so mom and I pried ourselves away from the perfect angel that is my niece and ran down the road to get her some food. We had called the order in so we could get right back to the hospital so while my mom ran into the restaurant to get food I sat in the car.

Now I really love to work out for those of you that don't know so my chest, along with other muscles, being sore isn't really cause for alarm usually, but for some reason that day I remember my chest being a little sore on the right side. I couldn't remember working chest at the gym in the last few days so I thought it was strange. While I was sitting there in the car watching the traffic my hand just so happened to go up to my chest and there under my right arm pit I felt it immediately.

A small, sore, lump.

I froze instantly and started feeling around while my heart sped up to a million miles an hour. Lumps around your breasts only mean one thing, right?! At least that's where my mind went. I panicked.

What seemed like 10,000 minutes later my mom finally returned to the car and she saw the look of horror on my face and asked what was wrong. I, of course, told her and she said that it was probably nothing but I might want to put a call into my Gynecologists office just to be sure. Well, me being the type A that I am, called immediately.

 I have to add that I've been with my OB/Gyn for 5 years at this point and the best part about him is his nurse, Kathy. Like the saint she is, she called me back within about 5 minutes of me leaving her a pretty frantic message. I explained to her what was going on and she said again, just like my mom had, that it was probably nothing but it would be best to get a mammogram then make an appointment to come into the office. A million and one thoughts were racing through my head at this point but I couldn't make sense of any of them. So I thanked her, hung up the phone, took a huge deep breath, said a small prayer, and tried to not thing about it for the rest of the day. Ha!

Kathy, my OB/Gyn's nurse, is a miracle worker because she had gotten the mammogram scheduled just 3 days later along with an appointment with the nurse practitioner immediately after. She made sure to let me know that it would most likely be too soon to have to results from the tests but I agreed to be seen anyway, Type A remember! Patience is not a strong suit of mine.

So my husband and I took off to Beaumont the morning of June 12th to hopefully, maybe, get some answers.

This was my first experience having a mammogram and even though I had heard horror stories about these tests, it really wasn't that bad. The technicians were so sweet and tried their best to make sure I was comfortable. I think I threw all of them off though because here I was, 28 years old coming in for a mammogram because of a palpable mass. On the outside I probably looked put together and calm but inside was a completely different story!

 After the mammogram was complete they asked me to just have a seat while they took a look at it to make sure they don't need any additional views. More waiting.....

I don't remember exactly how long I sat there, stewing, but one of the ladies finally came in and said they saw the lump I felt and I needed to have an ultrasound of the area to 'get a better look'. Now I'm nowhere near a sonographer or even pretend to know what they see in all that grey and black fuzzy stuff on the little screen but I've had enough of them to know that when the tech hangs out in an area longer than the other areas, that can't be good. My tech that day wasn't letting the slightest information go the whole time so I had no idea what was going on or what she was looking at. She did a full scan of both breasts but stayed on the right side a lot longer than the left. She would swoosh her hand some, push some buttons, make a strained face, and angle her hand again just a smidge and repeat. She did finally say that she was trying to get some good pictures of the mass, which I sighed and said, "oh ok." Problem was she wasn't on the spot I had felt the lump. She was in a completely different area!! Oh my. I knew then whatever she was looking at, wasn't supposed to be there.

We arrived at my OB/Gyn's office later that afternoon and was shuffled right back into a room. Well, I was. My husband kindly sat in the waiting room because we weren't finding out any test results anyway so he was good just hanging out where he was.
It was the same spiel... what's going on, ok undress from the waste up, put on the paper gown, she'll be right in, blah, blah, blah.
The nurse practitioner came in just a few minutes later, we talked for a second, she did the exam and then she sat quietly and looked at me. "Callie, we have the results from the mammogram and ultrasound and there is a small mass that is most likely benign but a biopsy needs to be done ASAP and it most likely needs to be removed..."

Ummmm.......  

I apparently blanked out after "we have the results..." because I heard her say my name a few times. She then said something about options and surgeons and all I could think was I need my husband and I can't make this big of a decision alone. So finally I told her, "Could you possibly go get my husband? He's in the waiting room..." Thankfully she got one of the nurses to go get him and he came in and she then explained to him was she was trying to explain to me. He nodded and said ok and then looked at me and asked me what I wanted to do.

Well friends, I knew the word biopsy was associated with Cancer, you know the scary word, and the only place to go when the scary word was possibly in the picture was MD Anderson in Houston. So I told her point blank that's where I wanted to be for this. She thankfully agreed and said she would put in the referral for the Undiagnosed Breast Clinic there which is for patients that do not have confirmed cancer. Which was me at this moment.

 I got dressed, checked out, got into the car, we got out of the parking garage, and I. broke. down. I didn't know what to think, what to feel, how to process, any of it. All I knew is that I had a 'mass' growing inside of me that wasn't supposed to be there. My sweet husband was so supportive and he just sat there while I got it all out. I knew in my mind it was most likely benign, which means not cancerous, but I couldn't stop the fear that it wasn't. After a solid 10 minute pity party I put my big girl panties on and started to deal with it.

We then found ourselves in Houston at the MD Anderson Cancer Center Undiagnosed Breast Clinic on June 18, 2014. Just 6 days later. I know that God definitely had a hand in getting all these appointments scheduled and I could not have been more thankful for that! I can't image having to wait weeks or months and not have any answers.

 I can't begin to describe the feelings I had that day going to this place. When my dad was doing his time at MDA my mom, in an effort to keep things normal I think, shielded us from his diagnosis, the hospital, all of it. To me MD Anderson was associated with Cancer which, was associated with death and sadness. I didn't know of the Hope and Life that was inside the doors but I felt it as soon as I walked into the Mays Clinic that day. I wasn't really sure what I was expecting but it wasn't what I saw. I saw people that were fighting, I saw people that were alive and well, I saw people just like me that were probably scared on the inside but knew everything was going to be ok because they were in the best place they could be surrounded by the best cancer doctors in the world!

After filling out a mound of paperwork, I met with the sweetest nurse practitioner, Suzanne Day. We went over family history, did an exam, and just chit chatted for a bit which put my mind at ease, at least temporarily. After that I was ushered off to get a breast ultrasound, again. This time I was half way prepared for the wand pausing, the technician perusing, and pushing tons of buttons over and over again without saying a word. She finished up and went in the back to let a radiologist take a look and it was decided that I needed an ultrasound guided needle biopsy. I was asked if I wanted to go ahead and do it that day, umm, let me think about it, well of course!

It was the biggest needle I've ever seen in my life but weirdly it didn't hurt much at all, just lots of pressure. I was still glad it was over when it was over though, don't get me wrong. Afterwards they told me to get comfy because they were going to go ahead and get an initial pathology report and it was be just a bit.

That's one of the good things about MD Anderson, they get in a hurry. My kind of people!

Finally the radiologist came back and said it was BENIGN!!! Praise Jesus! I think I even cried a little bit! After going back and talking with my sweet nurse practitioner after the biopsy it was determined I have a fibroadenoma, which according to the American Cancer Society, is a benign (non-cancer) tumor made up of both glandular breast tissue and stromal (connective) tissue that is very common in young women. That was the best news I had heard all month! I was then told I would need to be seen back for a follow up 6 months later just to be sure it wasn't growing or changing. Halleluiah it was back to normal for me!

6 months later at my follow up visit at the Undiagnosed Breast Clinic I again had a breast ultrasound just of the spot the fibroadenoma was and I also saw my sweet nurse practitioner, Suzanne Day, again. She confirmed everything looked great and that I wouldn't need to be seen back unless I felt something different during a self exam, which I learned the correct way to give one and how often it should be done. I also could start regular screening mammograms at the required age of 40.

Everything was peachy and I was ready to head home, except she stopped right before she walked out of the room. She turned and asked about my dad's history again and if I knew his families history. I explained to her that my dad was adopted so we have no knowledge at all of his biological family or their medical history, which made her think for a second. She asked if I had ever thought about genetic testing because of the young age my dad died of his cancer. I quickly told her I had heard something about Pancreatic cancer being hereditary but that was as far as I got and she said oh ok, I hope to now have to see you back, in a good way. I smiled and told her thanks for everything.

 I left that day extremely hopeful that I was never going to have to step foot back in MD Anderson as a patient, anytime soon at least.

Boy did God have very different plans for me.

The Story behind the story - My daddy

On August 5, 2015 my life turned upside down in just one phone call. No, not in the way you would immediately think. My children were perfect, my family was well, our house was still in tact, I was fine, well, sort of. I was told I carried the BRCA2 gene mutation, I was "BRCA2 Positive". I knew this was a possibility but I honestly did not expect it, nor prepare for it.

In order for you to fully understand what flipped me on butt and the events that lead me to get tested, I need to start at the beginning.


So grab a snack and a cup of coffee and get comfy, This is going to be a long one, so long in fact it's being split up into parts...

Part 1 - My Dad -

Ask anyone in my small town and they will tell you my dad was amazing! He was a God-fearing, hard working, Christian man. He was a man who, when he wasn't working shift work at one of the many chemical refineries in our area or working on our small homestead in the country, he was going to school trying to finish his education and be better for his 3 girls and wife. No matter how busy he was he always found time to read us a book, sit down to eat, or wrestle with us on the floor of our living room, and he always had time to bring his family to church. Those are things that I will always cherish and fondly remember about him.

You see, as a kid I think I took his presence for granted, he's my dad, he's invincible like all dads are. As a pre-teen he was the most annoying person on the earth, like all dad's are supposed to be. He was the dad that stood in the driveway with a shotgun when friends, that were boys, would show up to go ride four-wheelers with us in the summer. He was the dad that brought my friends and I "wrapping" when we were in Jr. High. But he was also the dad that had strict rules and morals that we were to live by, that were expected of us, but me as a rebellious 13 year old saw those, and him, as mean and there to ruin my life. Little did I know our lives would change drastically in the next year and how much I would regret.

My dad, you know the invincible one, was diagnosed at the very young age of 38 with Pancreatic Cancer. It took doctors over 5 months to finally make the diagnosis, which by that time it had spread to his liver and neighboring organs, making it Stage 4 Metastatic Pancreatic Cancer. After his 39th birthday he started treatments at MD Anderson Cancer Center in Houston Texas, 2 hours south of where we lived. I had just started Freshman year of high school and was oblivious to what this diagnosis really meant. My sisters and I were shuffled between family and friends while my parents spent countless hours, days, and even weeks in Houston. We were sheltered from the reality, by well meaning family.  Finally on October 31, 2000 after being in the hospital at MD Anderson for a few days the doctors came in with the inevitable, "There's nothing else we can do." My dad was sent home with Hospice the next day and died at home on December 9, 2000, 40 days after he was sent home. He left behind my mom, his wife of 16 years, my sisters who were 9 and 12, and myself who was 14. It was the hardest thing I've ever had to go through, watching my dad being literally eaten alive by this nasty disease. He went from being 260 pounds to 86 when he died. When I say terrible, I mean TERRIBLE! You know they say when something traumatic happens to you, your mind does a good job of blocking out the entire instance. Well, my mind must of been on point because there are gaps of that entire year I can't recall even now.

The reason it took them so long to diagnose my dad was because they weren't looking for this particular disease. He had a lot of the below symptoms, my mom says, but he was entirely too young to have this type of cancer because the average age of Pancreatic Cancer patients at diagnosis is 70.

Yup, you see that right. He was 30 years younger than the average age of diagnosis.

Here are some symptoms, facts, and statistics of Pancreatic Cancer.

Pancreatic cancer is sometimes called a “silent” disease because symptoms are rarely present in its early stages. Many patients have advanced disease by the time it becomes noticeable to the patient and doctors. If symptoms are present, they are often vague. Patients may experience different symptoms depending on the location, type and stage of the cancer.

Symptoms that commonly lead to diagnosis include: jaundice, abdominal and/or back pain, new-onset diabetes, unexplained weight loss and loss of appetite. A person with advanced pancreatic cancer may also experience ascites (fluid in the abdomen) and blood clots. Symptoms such as fatigue, weakness, digestive difficulties and depression may occur at any time.

For more information regarding pancreatic cancer awareness go here.

Below are some more statistics on Pancreatic Cancer. These were taken from www.pancreatic.org

• Pancreatic cancer is one of the few cancers for which survival has not improved substantially over nearly 40 years.

• Pancreatic cancer is the 4th leading cause of cancer-related death in the United States.

• Pancreatic cancer has the highest mortality rate of all major cancers. 94% of pancreatic cancer patients will die within five years of diagnosis – only 7% will survive more than five years. 74% of patients die within the first year of diagnosis.

• The average life expectancy after diagnosis with metastatic disease is just three to six months.

• Few risk factors for developing pancreatic cancer are defined. Family history of the disease, smoking, age, and diabetes are risk factors.

• Pancreatic cancer may cause only vague symptoms that could indicate many different conditions within the abdomen or gastrointestinal tract. Symptoms include pain (usually abdominal or back pain), weight loss, jaundice (yellowing of the skin and eyes), loss of appetite, nausea, changes in stool, and diabetes.

• Treatment options for pancreatic cancer are limited. Surgical removal of the tumor is possible in less than 20% of patients diagnosed with pancreatic cancer. Chemotherapy or chemotherapy together with radiation is typically offered to patients whose tumors cannot be removed surgically.

• Pancreatic cancer is a leading cause of cancer death largely because there are no detection tools to diagnose the disease in its early stages when surgical removal of the tumor is still possible.

 You see, these facts and statistics are scary and not very promising even today. Think back to 2000 when my dad was diagnosed and image the statistics then. They were worse.

Although the odds were completely stacked against him, he never, not once, waivered in his faith in God or in his fight. He died fighting and I miss him every. single. day.

 It's because of him I'm even starting this blog to begin with because not only did I get his dark brown hair, his eyes, and his smarts.

He gave me his BRCA2 gene mutation. Because of that, and God's timing, I now have an advantage most people will never get. I can take the bull by the horns so to speak and be in control of my health. Well, God is actually in control but you know what I mean. :)

More to come about my BRCA2 mutation and how I found out. Stay Tuned sweet sweet friends!