Patient Stories: Susan Kobayashi

“Twenty years ago, I found a lump in my breast,” said Susan Kobayashi in a recent conversation. “I was 36 years old; not old enough to have a mammogram on a regular basis. They told me that it was cancer.”

The doctor told her It was stage zero with no chance of invasion, so Susan went on with her life. But six years later, she had a recurrence in the same breast—also stage zero—found during her routine mammogram and ultrasound. “It was tiny,” Susan recalled; “but I opted to get a mastectomy of the right breast. When they took the tissue out and looked at it, they couldn’t find any cancer in it. I was told by my doctors that I had basically no risk of metastasis and that I would be well monitored.”

Eight years later, when she was fifty, Susan was having problems with her eye. “I’m a dancer and I couldn’t see well,” she remembered; “I went to an ophthalmologist and he said ‘You have a tumor in your eye. There is no such thing as eye cancer so it must be a metastasis from somewhere else.’”

Susan’s ophthalmologist called her oncologist and requested that she be scanned immediately. It turned out she also had more than a dozen brain tumors, as well as a four-centimeter tumor in her breast, a bunch of tumors in her lungs, and one in her femur bone. “If you have a tumor in your eye, it usually means your brain tumors have been around for a while and have now moved into your eye,” she explained; “It was a shocking diagnosis. The only symptoms I had were a cough and a little blurred vision, but it turns out I had widespread metastasis.”

After the discovery, Susan quickly got whole brain radiation, then started with treatments that she continues to this day. “What people don’t understand is that stage four means you’re always on a treatment, going from one to the next,” she said; “It’s like throwing darts at a dartboard. There’s not a lot of data. You could be on something and your cancer could be progressing, but you don’t find out until you have a scan three months later.”

While waiting at her oncologist’s office one day, Susan overheard two young women talking about a “BAYS meeting,” which she later Googled. That’s how she found Bay Area Young Survivors and ultimately Ciitizen. “For me, having all my health information at my fingertips is great because I have been keeping six years of notes about all my treatments,” she stated; “Remembering how long I’ve been on each one and for what dates is impossible. To have all that in my profile is important.”

More than six years later, Susan said she’s been surprised by how well she’s been managing as a stage four patient. “I’m still dancing, doing intense yoga, going on long walks with my dog,” she added; “I don’t work anymore because I have so many appointments and it’s a part time job just doing research and trying to figure out what I’m going to do next. My two kids, who were two and four when I was first diagnosed, are now 22 and 26.”

As for what Ciitizen can do to best help patients like her, she’s hoping clinical trial matching will become easier with the ability to quickly share her data. “I’ve been on three different trials and I’m a big supporter of trying to develop new drugs,” she said; “It would be a game changer to not have to throw darts and hope a treatment works.  Accumulating, sharing and analyzing data is the only way we can build a framework for selecting treatment plans.  There are many new treatments and many more in the trial pipeline. The more we look at cancer, the more we realize how diverse it is and, subsequently, how customized the treatments must be. Thankfully, we have been living longer so selecting your next treatment and the sequencing of your treatments has become increasingly important.”

Join Susan and sign up with Ciitizen to take control of your health data and help advance important breast cancer research.