May 10, 2017 Latest post:
Sep 25, 2017
Here is the beginning of my breast cancer journey. I'm probably going to include more detail then some of you want or need, but I'm a scientist and educator so that's what I do. ;) Thank you for taking the time to read all the backstory and I will try my best to keep my journal as updated as possible.
In mid March I went to my general practice doctor for a persistent itch on the back of my head. At the time I didn't think It was much of anything except an annoyance. As it turns out, that itch may have saved my life. She prescribed a cream (as doctors usually do) and we were going to call it good. Then I remembered that I had also been dealing with another annoying itch on my breast for the past couple months. I asked if I could use the same cream on that itch as well. She looked at it, asked about my family history (which happens to include a significant amount of breast cancer) and said that she wanted me to see a breast specialist. She knew that the specialist would want a mammogram so we scheduled that to be done prior to the appointment. The day of the mammogram came and I went into it convinced that this little itch was nothing more than an itch. Then they started taking more pictures. Lots more pictures. I started to wonder if I was mistaken. They ushered me to the ultrasound room and there I met the most incredible Radiologist in the entire Omaha/ Council Bluffs area (Dr. Arthur). He explained that the good news was that my itch did not appear to be anything abnormal (I later had a surface biopsy to be sure and it truly was just a random and stubborn itch). The bad news was that they had found a mass deep within my breast and needed to do more investigating. They did ultrasounds and the mass had all the tell tale signs of cancer so we scheduled a needle biopsy right away. If you have never had a needle biopsy, count your blessings. They are not so much fun. Because my mass was so deep and against my chest wall, they went in through the side of the breast as to not overshoot and clip any of the chest wall muscle. They make a tiny little slit in the skin, not even big enough to require stitches, and insert a fairly thick "needle" that is probably about 8 inches long through that. The end of the needle has a trough that they insert through the mass and then when they click the button a cover snaps over it carving out the biopsy piece from the rest of the mass. This is all guided by ultrasound and they did it six times for my mass. The samples kind of look like little white worms when they come out. Very fascinating. You are all numbed up when they do it so you kind of have a false sense of how much it is going to hurt at the time. Once that numbing agent wears off though...YIKES! As in YIKES for days and then just ouch for a few weeks.
The next few days were tough. The waiting for answers part always is. From what we had talked about and what they had shown me, the unspoken consensus between all of us was that the test would come back positive, but that didn't make the waiting any easier. Sure enough, a few days later I got the call from my GP doctor I had been waiting for. I felt so bad for her having to tell me (because who would ever want to be the one to tell someone else they have cancer?) and I could tell she was trying her best to be gentle about breaking the news. I could also sense her shock (and maybe even a little relief) when I responded with "yeah, that's pretty much what we had assumed based on what it looked like. So what now?" We talked about what this diagnosis meant and a few days later I went to see the breast specialist. He told me that the cancer I have is called "triple negative" breast cancer. What that means is that it doesn't have any hormone receptors (estrogen, progesterone or HER 2). This is a fairly common type of cancer for women my age (which I feel obligated to admit is 38) but a fairly rare form when compared to overall number of breast cancer cases. It is the most invasive and aggressive form of breast cancer, however it also typically responds well to treatment. When they do the pathology of your biopsy they also grade your cells. If your cancer cells have a low number, that means they more or less match the surrounding breast tissue. Once they reach a grade of 3 they look pretty wonky and deformed and do not resemble the surrounding tissue at all. Yep, you guessed it. Mine are a 3. I always say go big or go home, so I guess that applies to my medical stuff as well.
This is when the barrage of appointments started. It has been two months now since my diagnosis and I have seen breast specialists, surgeons, medical oncologists, radiology oncologists, genetic counselors, reproductive endocrinologists, nurse navigators and educators, and some other people whose official titles I don't even know. I would tell you how many appointments I have had in the past two months, but I stopped counting when I hit 35. The good news is that one of these appointments was for a full chest MRI. That showed that right now my lymph nodes do not appear to be affected. That means that even though this cancer likes to shed cells and cause other cancers to form all over the rest of your body, they don't appear to have made it to the lymph nodes yet (which is how they are typically dispersed throughout the body). It also showed that the size of my tumor (at that point) was about 1.6 cm x 1.4 cm. I have had several people ask me what stage I am and honestly that isn't really an easy thing to answer yet. These results would put me at a stage one, however the actual stage is not determined until after surgery since it relies on a variety of factors so I can't give an official stage yet.
Overall I think I've been dealing with all of my tests and diagnoses pretty well, but there have definitely been a few things that have caught me off guard. For instance, when I talked to my first oncologist, I learned that the type of chemo they need to give for my specific type of cancer has a very likely chance of making me infertile. That was something I had never considered as a side effect of breast cancer and when your doctor says you need to see a reproductive endocrinologist if you ever want to consider having more children, it kind of hits you like a ton of bricks. Even if you aren't really planning on having more children, to have someone tell you that at 38 you probably won't be able to even if you want to, that's a lot to take in. As a side note on this topic, I also discovered that harvesting and freezing your eggs in anticipation of chemo induced infertility is not seen as a "medical necessity" and therefore not covered by insurance. So...unless you have tens of thousands of dollars collecting dust somewhere, I strongly advise you against getting cancer before menopause.
On the topic of chemotherapy...when you are diagnosed with triple negative breast cancer at a younger age, chemotherapy is not optional. The good news is that typically this type of cancer responds very well to chemotherapy. The bad news is that since it does not have hormone receptors, they have to use some really icky and caustic chemo drugs. The chemo I will be receiving starting this summer will cause hair loss, a decrease in my white blood cells, fatigue, nausea, GI issues and a whole bunch of other lovely things. They even have a very slight risk of causing heart failure and cancer of the blood (very small risk, but definitely with knowing). So...if I'm wearing a mask while hanging out with you later this summer or fall, please don't be offended. There isn't anything wrong with you. My body just will not be able to fight off even the smallest of infections so I need to take extra precautions. What a healthy person would be able to fight off without batting an eye could turn into a major infection and trip to the hospital for me. I promise to go back to my normal levels of germaphobic behavior as soon as my white count is back to normal. ;)
As part of this journey I also chose to have genetic testing. I have a hearty family history of cancer so I wanted to know if this was genetic and if there was the possibility that I had passed it on to my children. When the test came back it showed that I was BRCA 1 positive. This means I have a mutation on my 17th chromosome which prevents the correction of damaged DNA during cell division allowing damaged DNA to continue to replicate. Those cells with the damaged DNA are the cancer. Having this mutation puts its carriers at a much higher risk of breast, ovarian, pancreatic, and prostate cancer than the general public. BRCA 1 is autosomal dominant which means that there is a 50/50 shot that it is passed to each offspring. (For my family members: if your parents are BRCA 1 negative then you are in the clear even though I have tested positive). Although this did not change my mind on how I wanted to approach my treatment, it is good information to have as it tells me I need to pay extra attention to these areas of my health going forward.
**Apparently I am too wordy for this section so please see my first journal entry for the rest of the story. Thank you!**