How We Found It - Part 1

I thought I should write a post to give the backstory of how we got here. I thought it would be helpful for my "sistas" out there to know. I'm especially thinking my younger cousin A could use this information.

Where to begin...

Because of my mom's history of breast cancer, I have been getting mammograms since I was 22. From 22 to 35, I had a mammo about every 4 to 5 years. Then at 35 I started going every year.

The problem with mammos is that they don't see everything. In fact, they miss about 20% of tumors. My breast tissue was very dense, which mimics the look of tumor tissue. In addition, because my tissue was very lumpy, self-exams were never effective. I would joke that you could park a Mac truck in there and I would never know. Prior to being diagnosed, the radiologists couldn't see the tumor on the mammogram, nor could anyone feel it. It really was a fluke that we caught it at all.

I went for my annual mammogram in December of 2009. During the exam, the radiologist saw something on the left that looked suspicious and recommended we take a look with ultrasound . "While we're at it, let's look at the right side too" he said. The ultrasound (us) showed nothing on the left, but it did pick up the 1 cm tumor on the right. Had he not thought to look on both sides, I would still be walking around with cancer in my body, completely oblivious to any danger. So I'm grateful to Dr. R for catching it.

The tumor was biopsied in January 2010. But the radiologist who did the biopsy missed the spot. The lab results showed that the spot was benign. This wasn't a surprise to us, since we were very optimistic that everything was just fine.

In December, Dr. R had strongly recommended that I get an MRI. Family history plus dense tissue were his main reasons. My insurance refused to cover it, however. At this point, I could have dropped it and decided to not press it any further. But I couldn't shake the feeling that I needed to get this done. I met with an oncologist on February, Dr. H. He wrote a letter to my insurance which persuaded them to cover the half of the cost.

Even with the insurance, the cost to us would be $1500. Brett and I went back and forth on if I should do it or not. Everything we read told us that false positives were common MRI results for young women with dense tissue. We were worried that we would be throwing money away just to put myself through more biopsies with benign results.

Finally, we decided that we should do it just to get a baseline image. Then we could repeat it in 5 years if needed. It was a tough choice. At the time, I had no idea what it would lead to.

I had the MRI done on March 6th. The tumor on the right side showed up again, along with a smaller one on the right and a smaller one on the left. We went on our spring break to Seattle and met with the radiologist when we came back.

This fellow was different than the other radiologists we had worked with. He didn't want to answer our questions and was very defensive when we questioned his recommendation to repeat the biopsy. We were operating from the perspective that everything was fine... we had a negative biopsy result from January, right? So why should we go through it again?

The staff at the Bozeman cancer center didn't have a protocol for dealing with this specific situation. In April, I met with a surgeon, an oncologist, and another radiologist and heard 3 different opinions on what we should do next. It was very, very frustrating and confusing.

After talking with my dad about what was happening, he recommended we go to Mayo Clinic, or a similar facility for follow-up care. So in May, we went to the Seattle Cancer Care Alliance.