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Apocrine Cancer of Unknown Primary

by Christine - 9/23/2007

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I am 46 years old and have always considered myself to be the healthy one of my family. I used to brag about how I didn't catch colds and couldn't remember the last time I had the flu! In addition to that, I come from a very healthy family. No diseases in my family tree, not even high blood pressure!! But all that goes to show is that when it comes to cancer, none of that has any relevance to its targets. I learned early on that trying to figure out what caused this was futile to say the least. Anyway, from the beginning... 

I had just recently gotten divorced, after a ten year marriage, I was on my own. It took quite a few months for me to close that door and begin to move on with my life. In March, I had finally gone back to work and by the beginning of April I had saved enough money to get my own apartment. I remember how excited I was to find my apartment. My new home, on my own, independent for the first time in ten years. 

The weekend after I found the apartment I started having an ache under my left arm. Nothing big, I figured I had pulled a muscle at work and ignored it. A couple days later I rolled over in my sleep and felt an extreme pain in my armpit, it was enough to wake me. The next day, April 17, 2007, it was bad enough that I went to an emergency room to get it checked out. The emergency room doctor said he thought I had a virus or an infection of some sort that was causing me to have swollen lymph nodes. Initially he said to just keep an eye on it and follow up with a primary care physician if it was still bothering me in a couple weeks. No big deal.

Before I left, he decided to do an ultrasound of the area. I remember the technician doing the ultrasound saying that she thought it was silly to be doing the ultrasound in my case, that most likely it wouldn't show anything and what I should be doing is a mammogram. So as she glides the wand under my arm, she paused and said " Oh My". I'm looking at the screen and see this big black area. She then tells me, "well this could be the source of your pain". 

Even then I still had no fear, after all, I'm healthy and nothing could be wrong with me. Then the doctor comes back and he says that it is probably reactive lymph nodes but, just in case, I should follow up and get a mammogram within the next couple weeks. Just a side note here, I had not been at my job long enough to have health insurance yet and I didn't really have a primary care physician to call to order the mammogram. I ended up calling a physician I hadn't seen in quite awhile and asked if he would order the test without me coming for an office visit. Luckily he agreed to that and I had the mammogram four days later. 

The mammogram also showed the "black area". I was told it was probably a cyst. The physician called me the next day with a referral to a surgeon for a biopsy. At that point, not a single person even mentioned the "C" word. I had some concerns, but those concerns were more to do with taking time off work to have the biopsy. After all it was just a cyst in my breast. 

On May 2, 2007 I had my biopsy. A couple days later it dawned on me that I had not heard back from my doctor yet. It was a passing thought, more confirmation that it was nothing serious to worry about. I thought about calling the doctor to check but was too busy and knew if it was anything to worry about he would have called by now. On the following Monday, May 7, I had just gotten off work and checked my messages. I had a message from my doctor, he just said he was calling about my results and he would call me back. Well now I knew for sure then that my biopsy was fine, after all when they have bad news the nurse calls and tells you to make an appointment to see the doctor. 

About an hour later I was home sitting on the couch and the doctor called back. He said, "Christine, you have cancer. The tumor is in the breast tail. That moment was surreal and I don't recall much of what I thought or did the hours following. He told me that I would need to have a lumpectomy and probably follow that with radiation. I was thrilled that he didn't say mastectomy, chemo or any of that. From the sounds of it this was just going to be a little "detour" in my world. A few days of recovery after the surgery and a few weeks of radiation and get on with my merry little life. No Big Deal. 

I had the lumpectomy and sentinel node biopsy of May 18th. My follow up appointment with my surgeon was on May 23rd. I was sitting on the exam table and my doctor walked in. I knew immediately by his expression that something was wrong. He goes on to say, " Christine, I'm afraid I have some bad news. The tumor we removed that we thought was in the breast tail was actually not the breast tail but was in fact a metastasized lymph node. He went on to explain that they could not find a primary, which I had no idea what that meant. Other than I had to start having all kinds of tests, scans and so on. 

In a very short amount of time what started as my little "detour" turned into major road block. My doctor also indicated that the tumor board would be meeting to discuss my case and come up with a plan. The next time my doctor and I met he told me that based on the opinions of the tumor board the recommended course of action at that point would be to have a mastectomy and try to locate the primary. He told me that in spite of nothing showing up in any of my tests sometimes the primary can be found once the pathology is done after the mastectomy. He also said the general consensus of the tumor board was that rather than breast cancer I had apocrine gland cancer. A very rare form of cancer, with very little information and no statistics for treatment plans and prognosis. 

I had my mastectomy on June 29th, hoping that would provide more definitive answers relative to my diagnosis and treatment plan. My follow appointment was just as disheartening as all the rest. He told me that they had not found any cancer in my breast. Now it was time to see the oncologist. He basically said all the same things the surgeon did about the apocrine gland cancer and the unknown primary. They just were not sure. All they knew for sure was that I had a metastasized lymph node. 

So that was a couple months ago and I had my 3rd chemo last week. I have 8 total, once every other week. It is making me sicker than I could have ever imagined. After my first treatment I didn't think I could go through with all this. I keep trying to tell myself that this is all worth it, but in the back of my mind I question everything because of all the unknowns. 

Through this I've come to learn a faith in God like I've never known before. And God has taken care of me in more ways than I can even say. And I know in my heart he will continue to take care of me. I'll be done with my chemo right before Thanksgiving and I'll start a 9 week radiation regimen. I understand that is not as bad as chemo so I'm not too afraid of that. So as I sit here with my little bald head I can only pray and that's what I'll continue to do.