This is a special guest blog post from Amy Kaechele, a wife, mother of three and freelance copywriter living in California.
It was nearly four years ago, when I was nursing my third baby, that I noticed a lump in my breast. My obstetrician suggested that maybe it was just a clogged milk duct, but I knew my body better. I had already experienced clogged milk ducts, and this felt different. I spoke to two doctors, and both tried to reassure me it was nothing and would clear up over time. But I pushed back, and my general practitioner finally agreed to order an ultrasound.
The image was inconclusive. So the radiologist ordered a mammogram – an x-ray image of my breast – and that, too, was inconclusive. They told me I might want to get a biopsy within the next three months, just to be sure.
Since there seemed to be no sense of urgency from either doctor or the radiologist, I waited a few weeks to make an appointment for a biopsy. And by the time I had the procedure four weeks later, the lump had doubled in size. I knew at that moment something was very wrong.
Three days later, I got the diagnosis from pathology: it was breast cancer – and a rare, so-called triple-negative cancer that is extremely aggressive.
My first oncology appointment was with an in-network doctor who required I obtain a CD of my images prior to my first appointment. That’s where the battle began. I had to make an appointment to get my CD from the imaging center where the mammogram, ultrasound and biopsy were performed. During that first appointment he hinted at the possibility I didn’t actually have breast cancer, so I immediately knew I needed a second opinion. I was referred to a nearby academic medical center that had its own breast health center.
Again, the people at the medical center said they needed the images from my ultrasound and mammogram before I could meet with them.
My anxiety level was off the scale. I had already been diagnosed with triple-negative breast cancer that had doubled in size in four weeks, and now I couldn’t see another doctor until they had my images. I had to make another appointment at the facility where I first had the images done, so I could pick a second CD.
When you have an aggressive form of cancer, time works against you. The doctors may tell you it’s not a medical emergency, but nobody knows for sure when the cancer may travel to your lymph nodes and make matters significantly worse or even deadly. So I experienced another week’s delay – not a long time for most people, but an eternity when you know you’re fighting cancer.
And there was no way I was going to trust these CDs with their images to the mail. It would have been like putting gold in the mail. So I drove each CD to the necessary medical center after each request. My anxiety was so high, each additional step in the process seemed like torture.
Ultimately, I got yet another opinion at a third hospital nearby, and that required an additional set of images: calls to two offices, picking up the CDs, delivering them again to another set of doctors. In hindsight, I would have requested three copies the first time I went for my images. But I had never been down this path, and there was nobody guiding me.
I was finally treated in November of 2014. I had 16 weeks of chemotherapy and then a double mastectomy. Since then, I’ve been cancer-free.
Looking back, it feels ridiculous. We live in a digital world. Why couldn’t I send these lifesaving images to my doctors as easily as I could send a baby photo on my smart phone?
When I think about Mammosphere, it seems as obvious as a paper clip. The constant hurdle during my search for the best treatment was the images.
Now I have a Mammosphere account. I think it’s one piece of the puzzle that helps me act as the CEO of my own health care. If I have a recurrence or a metastasis, I will have my entire treatment history in one place.
Thinking back to my diagnosis, I almost shudder: one doctor told me that if I had waited another four weeks, my cancer would have spread and become incurable. When you have cancer, time is your enemy. Mammosphere saves time.