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Why is it that a few simple words can seem to change your life forever? At only 37 years old, a Breast Cancer diagnosis was the last thing on my mind. And something I never thought I would need to spend the rest of my life dealing with.
Long before my diagnosis, I had a lump in my right breast for about a year. It appeared in August 2015, during a stressful time in my life. In the spring of 2015, we learned that my dad had Metastatic Pancreatic Cancer. Metastatic means the disease had spread to other parts of the body. Leaving it untreatable by conventional forms of Cancer treatment. He had received a Parkinson’s Disease diagnosis many years before, so the addition of metastatic cancer led to the only logical decision. He chose to enter hospice care, and spend whatever remaining time he had left in the comforts of home.
2015 went by in a blur. My husband and I spent every weekend we could at my parent’s house, helping them out in whatever way we could. A 40-hour workweek combined with our always on the go weekends took a toll on me both physically and mentally. I barely slept, and it was painful to watch my father slowly waste away. Not because of cancer, but the fact that the Parkinson’s was beginning to take its toll. At the end my dad could no longer swallow, so he eventually starved to death. We lost my dad in October 2015.
Towards the end of my dad’s life, in August 2015, I had a lump appear in my right breast. It appeared pretty much out of nowhere. This lump was not something that slowly grew in size like you would expect. It appeared, in what felt like, overnight, and remained the same size for an entire year. We all have learned the “traditional” symptoms of Breast Cancer, and this lump did not fit any of those criteria. It was movable, and it would consistently cause throbbing, stabbing pains, so the last thing on my mind was that it could be Breast Cancer. I believed it had to be benign as it did not fit any of the telltale signs of Breast Cancer.
My dad was the primary concern at this point, so dealing with this lump was the last thing on my mind. It appeared to go through cyclical changes throughout the month, which lessened my concerns that it could be anything but a benign cyst. This lump never got any larger, and it always remained movable, until the Fall of 2016. Suddenly it started to protrude in ways it hadn’t before. I had a firm lumpiness under the nipple that was quite obvious as I lay in bed at night trying to fall asleep. These sudden changes scared me. Not knowing if it was good or bad. Scared that I might face a future where I too would be faced with a Cancer diagnosis. Instead, I kept telling myself it had to be benign, otherwise, it would have already killed me, right?
During this time I was also dealing with a plethora of other health concerns, which caused me to finally seek the assistance of a Naturopath. For years, I dealt with a variety of issues, ranging from Migraine auras to brain fog, and joint pain, just to name a few. After doing a lot of reading, research, and dietary trial and error, it seemed gluten was the culprit. Figuring I had nothing to lose, I removed all gluten from my diet, including all topical products. It had been well over a year since going Gluten Free, and while I was feeling better, I still felt “off”. I knew I wasn’t unintentionally poisoning myself with Gluten and this left me feeling frustrated and unsure what to do.
One appointment, and one test later, my Naturopath determined that I had Adrenal Fatigue. My cortisol levels were low in the morning, peaked around noon, then crashed in the early evening. These results explained my low energy levels in the early morning and late in the day. As we determined a course of action to treat my Adrenal Fatigue, I also requested she check my lump. I knew I had to have it looked at sooner or later, and kept up hope that she would confirm my suspicions that it was nothing more than a benign cyst. A mix of emotions washed over me as she took me into one of the exam rooms. I kept telling myself that it was benign, and her prognosis would validate what I had been assuming it was for so long.
Mammogram at 37:
Needless to say, the look on her face, as well as her response, left me feeling anything but comforted. She was “highly concerned”, a comment I would hear countless times throughout my journey, that it was something other than a benign lump. As I lay there on the table, tears began to roll down my face, as there was no possible way that this could be cancer. My Dad had cancer, and I thought I was done with dealing with Cancer when he left his physical body here on Earth. Instead, I sat there facing the possibility of having to deal with my own personal journey with Cancer.
She was so concerned that she scheduled me for a mammogram and ultrasound the same say before I even left her office. As she worked on scheduling my tests, she popped in an out of the exam room to check on me. I cried as my hopes for a benign lump, and a normal life had vanished. Hell, I mean who wouldn’t be scared when faced with the possibility of Breast Cancer? I was visibly upset, so she mentioned that I should call my husband and see if he could go with me for the tests, so I would have some moral support during a very scary time.
One minute I was thinking it was nothing more than a fibrocystic cyst that would fade on its own once I hit menopause, instead I was getting my first mammogram at the age of 37. As I sat in the waiting area for my test, scared, and alone, because my husband could not come into the testing waiting area with me, I fought back the tears as all the what-if’s relating to Breast Cancer ran through my head.
They squished my breasts for the mammogram, which hurt like hell, and then took me into another room to complete the ultrasound. With that test completed, I laid in wait for the radiologist to come and discuss the results. I kept holding onto hope that it couldn’t be Cancer. Hope that my Naturopath was playing it safe, and sending me for tests to confirm that it wasn’t something bad, that it wasn’t Cancer. After what felt like forever, the radiologist finally entered the room. My husband and I both did our best to probe him for information, Instead, “Yep, that’s a palpable lump” was his only reply. They couldn’t, or more likely wouldn’t, tell me any more than I already knew. Yep, I have a lump in my breast that can be felt. Gee thanks, Captain Obvious!!
Tests, Tests, and more Tests:
My Naturopath called that night to follow up, partially to check in on me and make sure I was doing OK and to let me know that she was working on getting me in to see a Breast surgeon ASAP. I kept asking questions, trying to calm the fears, but the only response I kept hearing was that she was “highly concerned.”
The weeks that followed went by in a blur. I had my first appointment with the breast surgeon. They asked us to pick up the imaging disk from my mammogram and bring it with us. So I had my husband pick the disk up on his way home from work. He left work earlier than I did, and was closer to the hospital where the imaging was done.
When I got home from work, I found out that he had tried to look at the images, but never got that far before the tears started. Long story short, the dictation included on the disk perceived it to be Breast Cancer that had invaded the lymph nodes. He told me about this when I got home from work that night, bringing me to tears. I could not possibly have Breast Cancer, and I still held out hope until the very end that the doctors were wrong, and it couldn’t possibly be Breast Cancer. My travels across the internet had taught me that there were benign conditions that looked like Cancer on imaging, and since the dictation was based on imaging alone, there was still a small chance they were wrong. Right?
I met with the breast surgeon, and she looked at the lump and reiterated the same thing I had been hearing all along. She was “highly concerned” and we wouldn’t know for sure what we were dealing with, without a needle biopsy. Yet another frustrating appointment, leaving me knowing nothing more then I did going in. I still held out hope that it could not possibly be cancer, even though everyone else in the world seemed to think otherwise.
An ultrasound-guided needle biopsy was ordered. It was the only way to truly know what we were dealing with. My lymph nodes were enlarged, but still small enough that they could not be felt by hand alone. And the test was to be performed on the lymph nodes as well as the lump. I have always had a needle phobia, and the ones used during this procedure are quite large, in order to obtain an adequate core sample for testing.
As I lay on the table during the biopsy, I tried to get a feel from the doctor as to what exactly she was getting out of the lump. What did it look like? The response, “It looks like cells.” Again, I left this appointment frustrated and anxious, while still holding onto the fact that it couldn’t be Breast Cancer. Apparently, I was the only one who thought this way because everyone else seemed to think otherwise.
Breast Cancer Diagnosis:
It was on September 13th, 2016, that my life changed forever. This was the day I had the followup appointment with my breast surgeon. It was the day I would learn the results of the biopsy. The day where my diagnosis would become a reality. As I sat in the exam room with my husband, I still held out hope that it was benign, and I would leave that appointment being able to resume some form of a normal life.
I remember saying to the surgeon when she first entered the room, “I hope you have good news for me,” but the look on her face and the first words out of her mouth said it all. “You have Breast Cancer.” My heart sank. She examined the lump once more, then stepped out so I could get dressed. It was at that point that the tears began to fall. I could not possibly have breast cancer. The thought of dealing with breast cancer made me feel like I was stuck in a bad dream. One I was sure I would wake up from at any minute.
When she returned, she reviewed the biopsy results, and there is very little that I can say that actually sunk in beyond ER+, PR+. There was still one test that was outstanding, the HER2 test, which is what determines the aggressiveness of the tumor. I left that appointment with paperwork and my first of many pink ribbon pins. It felt surreal, as there was no way I could be dealing with a breast cancer diagnosis at only 37 years old.
Next on the list was a Breast MRI, CAT scan, and bone scan, all to determine whether cancer had spread past the breast and lymph nodes. This also also meant I would be referred to an oncologist. Yep, that is the one doctor I never had expected or wanted to have on my list.
Time is of the essence with Breast Cancer. In what felt like the blink of an eye, I was scheduled to meet with my oncologist for the first time. Yet another appointment that went by in a blur. I left that office feeling like I knew nothing more than when I walked in. I was lucky enough to have the company of my husband, mom, and a close family friend at my first appointment. They were able to digest more of the information my oncologist provided, than I was and later advised me of what I needed to be concerned with. In the midst of all this, the HER2 test came back positive as well. So beyond just dealing with breast cancer, I was dealing with an aggressive form as well.
On a positive note, the bone scan had come back negative, meaning cancer had not spread to my bones. The CAT scan was mostly negative, except for a spot on my liver. The doctors were 99% sure was benign, but needed additional tests to make sure. Two more MRIs were ordered. One of my brain, and one of my liver to make sure cancer had not spread to either location. Apparently the brain and liver are the two most common areas for Breast Cancer to spread to.
Both MRI tests came back negative. Stage IIIA ER+, PR+, HER2+ Breast Cancer was my official diagnosis. Next up was to finalize a treatment plan to attack the Cancer. Herceptin and Prejeta were prescribed as targeted HER2 chemotherapy medications. Docetaxel and Carboplatin were added in as the general cancer killers. Shorthand for my chemotherapy treatment plan was TCHP. I was scared to death. My Breast Cancer diagnosis had to be a bad dream. One I would wake up from at any moment.
Breast Cancer is quite common, and it has a high survival rate. But it’s hard not to be scared when you’re faced with dealing with this life threatening illness. Particularly with so many unknowns. How will I respond to treatment? Will I have negative side effects? Without realizing it, anxiety takes hold, and you find yourself fearing the worst. Especially when they review all the potential side effects of the medications you will be given, commonly known as Chemo Teach. Although the worst side effects are rare, it’s still enough to kick your anxiety into high gear.
As the start of my cancer treatment crept closer, the appointments I feared the most was creeping up on me. A short, outpatient surgery visit was all that was needed to place the port in my chest. This was a little bucket like device, called a Power Port, or Port-a-Cath is placed under the skin. It was a little purple heart-shaped device that would be used to administer my chemo treatments. In my entire life, I had never been through any type of surgery. Dealing with Breast Cancer brought a lot of firsts. This included all the tests I had been through in the past month. All of which did not help my anxiety levels.
The port surgery had been scheduled for October 10th, 2016. Followed immediately by my first round of chemotherapy, scheduled for the following day. I wasn’t sure which I feared the most, the surgery, or the chemo itself. I have to say it was a tie as they both had their own anxiety-inducing unknowns.
Surgery & Chemotherapy:
Luckily the port installation surgery went without a hitch. It was same day surgery. The only issue was an allergic reaction to the Chloraprep used to clean my skin. They closed the incisions with medical super glue, which I referred to as blue goo, and bandages placed over those areas as an added level of protection. They sent me home with pain medication, and guidance to not remove the bandages for 24hrs.
In preparation for my first chemotherapy treatment, I had to take the bandage off that was covering the port. The nurses would be inserting a needle into the port to administer my IV chemo. In order to minimize any pain felt during this process, lidocaine needed to be applied to numb the area. The bandage over the second incision was the only one that remained. It protected the incision used to insert the hose into my vein. I removed it later that night.
Despite my nerves, my first round of chemo went fine. It wasn’t until a few days after my treatment, that an itchy rash appeared. The rash was the exact shape as the bandages that had been on my skin. I took Benadryl religiously for weeks before I was finally able to get the itchy rash under control. In my entire 37 years of life, I had never gone through surgery. So I learned the hard way that I was allergic to Chloraprep. Luckily it was not a life-threatening allergy. They only used Betadine on my skin from that point forward.
Oncology scheduled me for six rounds of TCHP chemotherapy. With my treatments once every three weeks. With every round I went through, the side effects that I dealt with seemed to get worse and worse. There was fatigue that was unlike anything I have ever experienced. A facial rash that looks like acne, but much more painful, muscle fatigue, hair loss, and even fingernail separation.
I did my best to stay strong when it came to dealing with everything that the battle with Breast Cancer threw at me by focusing on taking things one day at a time. Being strong and positive all the time was hard. There were days where I hated what my treatments were doing to my body. I just wanted the entire process over with so life could return to normal. Of course, genetic testing was the remaining unknown in dealing with a breast cancer diagnosis.
When you think of Breast Cancer and genetics, the first thought that commonly comes to mind are the BRCA genes. The ones made famous by Angelina Joli, but there is much more to genetic testing than just those two. It took approximately a month for the gene test results to come back. We wanted the results as soon as possible, so the nurse drew my blood, prior to the final round of chemo on Jan 25th, 2017. We received the genetic testing results not long after. In addition to dealing with a breast cancer diagnosis, I had tested positive for the ATM gene. I was also indeterminate for two others, one being BRCA2 and the other CHEK2. That means not enough clinical documentation existed to determine whether these results were positive or negative.
Needless to say, the gene testing results meant I had to make the tough decision to have a double mastectomy. Being ATM positive puts you at a high risk for Breast Cancer. That meant, it was not a matter of if, but, when Breast Cancer would appear in the other breast and the last thing I wanted was to be faced with another Breast Cancer diagnosis.
I know this was a long post, and I’m sorry about that. There isn’t a cliff notes way to summarize everything I have gone through in dealing with Breast Cancer. I will do my best to keep you all updated on how things are going as I feel able to. Dealing with a Breast Cancer diagnosis is scary. And if my post helps just one person feel like they’re not alone, then I have done my job. Breast cancer is a scary disease and no one ever wants to feel like they are facing it alone.
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