Self-discovery

I realized yesterday that I never gave any background on this blog about how I discovered the cancer. I thought it was time because you can learn from my experience.

At the end of January, just before my period started, I noticed in the shower one morning that my left breast felt denser and thicker than my right breast. In fact, it felt like it might have been slightly swollen. I checked myself in the mirror, but my left side has always been bigger than my right side, so it was hard to see any major difference. I did a self-exam and didn't notice anything that felt like a lump. In absence of a lump, I figured it was something else.

I speculated that perhaps I was swollen from my impending period. I thought it was odd that both breasts weren't swollen, but there was no lump, so I wasn't concerned. It also occurred to me that I had turned 40 recently, and though it was a bit early, maybe this was an early sign of an impending menopause. Or maybe I'm just getting older.

I waited a couple of weeks for my period to pass and even noticed that it did seem less swollen. It didn't completely go away, but it seemed to improve. So I figured, whatever it was, was going away. Again, in absence of a lump, I wasn't concerned.

Within a couple of weeks, I noticed that it really wasn't going away. In fact, it might have gotten a little worse. This is when I decided to take action. The last time I had seen my doctor, not too long before I discovered the change, he had given me a recquisition for a mammogram. I am 40, after all. It was time. So, I knew that if I made another appointment with my doctor, he would just make me get the mammogram. So, I made an appointment for the mammogram, and I scheduled a follow-up appointment with my doctor the following week. I never made it to that follow-up appointment.

When I called and scheduled the mammogram, I explained to the woman on the phone the symptoms I had noticed. When I went in for my mammogram on Tuesday, I described the symptoms again. They asked if I had told the person scheduling me because I was just scheduled for a screening when I should have been scheduled for diagnostics. Unfortunately, the diagnostic team had already left for the day, so they could only do the mammography that day. The tech did a breast exam and then went and got someone for a second opinion. Interestingly enough, they seemed more concerned with something on my right breast than my left breast. The tech reassured me that they often pull in someone else for a second opinion and that it doesn't mean anything. But as I waited alone in the room, I kind of sensed that this was going to be the beginning of something big. I didn't know what yet, but I knew something was wrong with me. I was hoping someone was going to be able to prescribe some antibiotics and it would all go away. But, I had that feeling inside that it was more than that.

Anyway, the next day they called me and asked me to come in for diagnostic tests the following Friday. The diagnostic test they did was an ultrasound. They looked at the right breast first and concluded that they were not concerned about whatever they found there and would look again in 4-6 months. I had gone home after the mammogram and felt it. I could feel something, but I don't know what it was. Was it a lump? Was it another thickening that was just starting? I couldn't tell, but I could see why they noticed it.

When they looked at the left breast, they found a lot of "calcifications." There were none in my right breast. They noticed some swelling of the skin and breast tissue. Again, they didn't find any in my right breast. She kept telling me that these symptoms can lead to a number of outcomes, but the thing that concerned them was that they didn't appear on the right side. From this, I concluded that the other, non-cancer things it could be were more likely when they appeared in both breasts.

They also noticed a couple of "prominent" lymph nodes, but the doctor wasn't that concerned about them. Whatever she expected to see there in cases of cancer, apparently wasn't there. At any rate, she told me that she couldn't diagnose without a biopsy. They gave me a list of surgeons they recommend and told me to select one with my doctor's recommendation. I still had my follow-up appointment scheduled with my doctor the following Monday, so I had planned to discuss it with him then. When I mentioned this to the tech, however, she asked me if I wanted to wait that long. In light of that question, I called my doctor's office as soon as I returned to work. I had my biopsy scheduled (or so I thought) before the end of the day. I had also cancelled my follow-up appointment with my doctor until I knew more.

On the following Tuesday, I thought I was going to get a biopsy. (By the way, since I didn't have a lump to remove, they explained that the biopsy would just remove some breast tissue and skin cells.) I thought it was odd that no one had given me any pre-surgery instructions, but I thought that perhaps I was going to receive a needle biopsy and that I wouldn't need to do anything special. It turns out that this was just a consultation with the surgeon. It really angered me at the time. I knew I was getting a biopsy because they suspected cancer. The fact that a doctor had asked for a biopsy only to have a surgeon spend 10 minutes with me to confirm what I already knew ("You need a biopsy.") was really frustrating. I've since come to terms with this. I understand that without his examining me first, how would he know where to cut. And, I'm sure it's a CYA meeting to make sure that someone didn't schedule an unnecessary surgery.

However, the most frustrating thing was that my biopsy was scheduled almost a week later. I was starting to get panicky because I felt like a lot of time was slipping by, and I still didn't know anything. If this was cancer, then I didn't feel like I had time to waste. Part of me felt like if a few days actually made a difference, then they wouldn't make me wait. But the other part of me felt like no one was understanding the urgency of this. I didn't push the issue, though I thought about it. Instead, I decided to use the time to educate myself.

I stayed away from anecdotal sites, but I did go to some medical sites to see what else this could possibly be. I knew that it could be cancer. But I also knew that just about anything that could be wrong with your breast, no matter how benign, has the same symptoms as cancer. So, I wanted to learn what some of those benign things could be, so I could focus on something besides cancer. (I completely believe that positive focus makes all the difference in the world.)

However, when I looked at all my symptoms, I kept coming back to something called "inflammatory breast cancer." My symptoms were identical, though I didn't have them all. So, I started looking for the benign issues that had the same symptoms. The only one I found was mastitis, which occurs most frequently in nursing mothers. Hmmm. I tried to convince myself that maybe early menopause could cause changes in my milk development that would result in something like mastitis. It was a stretch, but the alternative was ibc.

I learned enough about ibc then to know that it was aggressive and that days do make a difference. This frustrated me all the more, but by the time I learned this, my biopsy was a couple of days away. I waited it out. The days after my biopsy were the hardest. I knew that my diagnosis was impending, but I had no idea what the outcome would be. And I was terrified that the outcome would be this aggressive form of cancer that, until fairly recently, had been 100% fatal. I had already dealt with the idea that if I had cancer I would most likely lose my hair and quite possibly lose my breast, but I had a hard time coping with the idea of loss of life.

Three days after my biopsy (and nearly three weeks after my initial mammogram), I was diagnosed with inflammatory breast cancer. I wasn't surprised. In fact, when he said the words, I realized I had been expecting them.

At that moment, I began to wish I had been more aggressive and told the women's center, "That's not good enough. I need to get tested earlier." I wished I had done the same when my biopsy was scheduled a week later than I thought. Fortunately, for me, it turned out okay. My cancer hasn't spread. But, for some, being more aggressive will be critical. Don't be afraid to be aggressive. Doctors are human after all. This is your body and your well-being. It's okay for you to be aggressive. And, believe it or not, your doctors will respond if you insist.

Fortunately, my first appointment with an oncologist was only a few days later. Prior to the appointment, I made sure I really educated myself on this form of cancer. I learned that they have figured out how to treat it so that it doesn't have to be fatal... particularly when caught early. I lined up a number of questions for my oncologist. I also went in prepared to change doctors if my oncologist had no experience with ibc or wasn't prepared to treat it as aggressively as I knew it needed.

I'll admit that prior to my appointment with my oncologist, I still had concerns. However, since the moment I left his office that day, everything changed. I've been completely at peace with this and have had no fear. He had experience with ibc. And, he was so aggressive in treating it that I started chemo the next day. He also spent nearly two hours with me going over all the treatment options, the pros and cons, his recommendations (and why), and answering all my questions. He never once made me feel rushed or that he had anywhere else to be. And, he never forced any decision on me. The Universe definitely sent me to the right doctor.

I am no longer afraid of losing my life to this cancer, because I won't. I knew that the moment I walked out of my oncologist's office. Not because of anything he said, but because I knew that's not my story. My story is how to overcome this. My story is to teach others about this, to raise awareness of ibc, and to let all women know that cancer doesn't have to be as scary as it is when we know nothing about it. Breast cancer is scary, there's no doubt about that. However, it is stuff that we don't know about cancer that is far more scary than the stuff we do know. So, my story is to be shared... to shed light on those unknown dark corners so that women everywhere can see that there are no monsters in the corner. And, while there is something to fight, we have the strength within us to overcome it.

So, the title for this entry is not only about discovering my cancer, but it also about discovering myself in the process. Yes, I have a lot of inner strength. But so does every woman reading this blog. The trick is to recognize it and embrace it. Because, I promise you, when you connect to that strength, and love it, you can do anything.