Why is it that a few simple words can seem to change your life forever? At only 37 years old, these are the last words that I had ever expected to hear. I had a lump in one of my breasts for about a year before this diagnosis occurred. It appeared in August of 2015, during a very stressful time in my life. My dad had been diagnosed in the spring of 2015 with Pancreatic cancer that had metastasized, meaning it had spread to other parts of the body, leaving it untreatable by any form of medication. My father had been diagnosed with Parkinson’s disease many years before, so this added diagnosis led to the only logical decision, to enter hospice care and spend whatever remaining time he had left at home.
I have to say that the year 2015 pretty much went by in a blur. We spent every weekend we could over at my parent’s house, helping them out whenever we could, which needless to say took its toll on me both physically and mentally. I watched as my father slowly wasted away, due not to cancer but the fact that the Parkinsons was beginning to take its toll. It reached a point that he could no longer swallow water, so he eventually starved to death.
During August of 2015, I had a lump appear in my right breast, pretty much out of nowhere. This was not something that slowly grew in size, no it appeared in what felt like overnight at the very size it remained for an entire year. Said lump was always moveable, and it would consistently cause throbbing, stabbing pains, leading me to believe it was a benign condition as it had none of the traditional symptoms of Breast Cancer.
We lost my dad on Oct 2nd of 2015, so dealing with the lump was the last thing on my mind. It appeared to go through cyclical changes throughout the month, lessening my concerns that it was anything but benign. It never got any larger, and it always remained sore and moveable, until fall of 2016. Suddenly it seemed to start 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. I was scared, but kept telling myself it was nothing more than benign, otherwise, it would have already killed me, right?
During this time I had finally made the decision to start seeing a naturopath to finally get my other health concerns in order. For years I dealt with a variety of physical issues, ranging from Migraine Auras to brain fog and joint pain. After a lot of trial and error, I had found that I was having negative reactions to ingesting gluten, so I removed it 100% from my diet, including any topical products. It had been well over a year since removing the glutens, and yet I still was not feeling 100% back to normal, I knew I was not unintentionally poisoning myself, which left me frustrated and unsure what to do.
After only one appointment with my naturopath, it was found that I had adrenal fatigue, which explained my low energy levels early in the morning and later in the day. In order to confirm my suspicions of what I thought this lump was that I had been living with for so long, I requested she check it out more or less to calm my fears that it was not anything other that what I originally thought it was. Needless to say, the look on her face and her response left me feeling anything but comforted, as she was highly concerned 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 this could be cancer. She was so concerned that she got me in for a mammogram and ultrasound that same day, and mentioned that I should check and see if my husband could go along with me as she could tell I was visibly upset. Hell, I mean who wouldn’t be when faced with the possibility of Cancer??
One minute I was thinking this was nothing more than a fibrocystic cyst that would eventually fade when I hit menopause, instead I was getting my first mammogram at the age of 37. As I lay there after the ultrasound was done waiting for the radiologist who was to look at my images to come in and talk to me, I kept thinking it could not possibly be cancer. My husband and I both tried to get some form of information out of him, and all we got was a generic, yep that’s a palpable lump. I left that appointment extremely frustrated as they had told me nothing more than I had already known. Yep, I have a lump in my breast that can be felt. Gee thanks, Captain Obvious!!
My naturopath called that night to follow up, and let me know she was working on getting me in to see a surgeon ASAP. I kept asking questions and the only thing I kept hearing was that she was “highly concerned.” The weeks that followed went by in a blur. I had an appointment set up with the surgeon, and it was requested that we pick up the imaging disk from my mammogram prior to the appointment. I had my husband pick up the disk on his way home from work as he worked near the hospital where the imaging was done and got off work earlier than I did. I found out when I got home that he had tried to look at the images, but never got that far before the tears started. Long story short, the dictation perceived it to be 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 cancer, but I still held on to the fact that it couldn’t be, as there were benign conditions that looked like cancer on imaging and that was all the doctors were basing their information on.
I met with the surgeon, 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 biopsy. Yet another frustrating appointment to leave knowing no more than I did going in, yet I still somehow held strong to the fact that it still could not possibly be cancer while it seemed like everyone else in the world seemed to think otherwise. The next step was my biopsy, which had to be done with the assistance of ultrasound, as they were going to biopsy the lymph nodes as well, and those could not be felt by hand alone. As I lay on the table while she was doing the biopsy I tried to get a feel from her as to what exactly she was getting out of the lump. What did it look like? The response, it looks like cells. Yet another appointment that left me frustrated and anxious, yet still holding onto the fact that it could not possibly be cancer while everyone else still seemed to think otherwise.
It was on September 13th of 2016, that my life changed forever. That was the day I had the follow up with my surgeon to find out the results of the biopsy. As I sat in the exam room with my husband, I still held onto the hope that it was benign and I could go back to living a somewhat 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 did another check up on the lump and stepped out of the room so I could get dressed. It was at that point that the tears started. I could not possibly have breast cancer, this had to be some form of a bad dream that I was going to wake up from at any minute.
She reviewed the results, and there is very little that I can say that actually sunk in beyond it being ER+, PR+. There was still one test that was outstanding, the HER2 test, which is what determined the aggressiveness of the tumor. I left that appointment with paperwork and my first of many pink pins. Next text was a Breast MRI, CAT scan, bone scan, to determine whether or not it had spread past the breast and a referral to an oncologist. Yep, that is the one doctor I never had expected or wanted to have on my list. That first appointment went by in a blur and I left feeling like I knew no more than when I walked in, but luckily my husband, mom, and a close family friend had come along, so they were able to digest more of the information and 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 having breast cancer, it was an aggressive form as well.
Luckily the Bone scan had come back negative, meaning the cancer had not spread to my bones, CAT scan was mostly negative except for some spots on my liver that they were 99% sure were benign, but needed additional tests to make sure. Two more MRIs were scheduled, one of my brain, and the second of my liver to make sure the cancer had not set up residence in either location, as apparently, those are the two most common areas for it to spread to.
Luckily both those tests also came back negative, so all that was left was to finalize my treatment plan for ER+, PR+, HER2+, stage III breast cancer. Herceptin and Prejeta were prescribed as targeted medicines for the HER2, then docetaxel and carboplatin as the generalized cancer killers, short-hand is TCHP. I still kept wanting this to all be a dream, as I was scared to death. Sure breast cancer is quite common, and it has a high survival rate, but when you find yourself facing it, its hard to not be scared, especially with so many unknowns. How will I respond to treatment, will I have negative side effects? It’s one of those situations where anxiety takes hold, and you find yourself fearing the worst of the unknown, especially when they go over all the potential side effects, most rare, of each and every drug you will be given.
While I was reaching the end of all the tests, the appointments that I feared the worst were creeping up on me. I would have to go in for outpatient surgery to insert a port into my chest which was to be used to administer my chemo treatments. I had never been through surgery, hell, I had never gone through any of the tests I had to go through in the past month, so it was a first time for a lot of things, which didn’t help my anxiety levels. My port installation was scheduled for October 10th 2016, and my first chemo was 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 probably was a tie as they both had their own anxiety inducing unknowns.
Surgery luckily came and went without a hitch, minus the fact that I apparently had a reaction to the Chloraprep used on my skin prior to the surgery. I was sent home with bandages over the two incision sites that had been closed with the medical super glue, which we refer to as blue goo, and was told to not take the bandages off for 24hrs. I had to take the one off the port area the next day as they needed to access the port for treatment but left the second one on, where the hose was inserted into my vein, till that night. The day of chemo all was fine, it wasn’t till a few days later that the itchy rash appeared in the exact same shape as the bandages that had been on my skin. It took weeks of Benadryl before I was finally able to get the itchy rash under control.
I was scheduled for a total of 6 rounds of chemo, once every three weeks. With every round I went through, the side effects that I dealt with seemed to get worse and worse. I have dealt with 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 am trying so hard to be strong, and I am trying to only focus on taking this one day at a time but its so hard, especially when I just want this entire process to be over with, but there was still one unknown, and that was the gene test.
Sure, many are aware of the BRCA genes, made famous by Angelina Joli, but there is much more that they test for. Blood was drawn before my last chemo, as it took about a month for the results to come back. My last chemo was on Jan 25th, and we received the results not long after. I had tested positive for the ATM gene, as well as indeterminant for two others as there is not enough evidence to determine if it’s positive or negative. Needless to say, I had to make the tough decision to have a double mastectomy as the ATM gene puts you at a high risk for Breast Cancer, so it was not a matter of if but more of a when it would appear in the other breast, and I sure didn’t want to go through the cancer journey a second time.
I know this was a long post, and I’m sorry about that, but I don’t really think there was a cliff notes way to cover everything that has happened thus far. I will do my best to keep you all updated on how things are going as I feel able to. If this post helps at least one person feel like they are not alone in this process, than I have done my job as breast cancer is scary and no one ever wants to feel like they are facing it alone.