“Anne is an incredible example of a patient who refused to be paralyzed by her diagnosis of cancer. She had an incredibly positive attitude from the beginning. She is a very active and motivated person. That didn’t change just because she was diagnosed with cancer,” noted Dr. Noah Hahn, Deputy Director of the Greenberg Bladder Cancer Institute at Johns Hopkins Medical. He spoke with BCAN about Anne’s more aggressive variant of bladder cancer known as carcinosarcoma or sarcomatoid bladder cancer. This uncommon type of tumor tends to be more aggressive, and the outcomes tend to be worse than patients with the same stage of bladder cancer that do not have sarcomatoid features in their tumor(s). Dr. Hahn estimates that it probably accounts for 5% to 10% of all bladder cancers.
Dr. Hahn recalls Anne saying, “If we’re going to do chemotherapy now, and surgery six to eight weeks or so after that, I’ve got plans next year to participate in some important dance events, so you need to work with me to get me in shape for that.” He continues, “Anne is a good example of a patient being able to work with her medical team to devise a schedule, for initial treatment, the surgery, and rehab, with some very specific life goals in mind. Physicians are sometimes very focused on the disease-specific timelines and goals.”
“We really do care about the whole quality of life and other things that are going on with patients, but it helps when a patient is an interactive part of that treatment planning process.”
From the very beginning, Anne set some goals for herself, and for her health care team. “I would emphasize that in this process Anne never overstepped any boundaries. It was never a pushy type of relationship. From the beginning, she said, ‘This is where I want to be a year from my surgery, and I want your help to get me there. How do we do this?’” Dr. Hahn explained “We are fortunate at Hopkins. Like many medical centers that perform a lot of cystectomies, we have great resources. These include the nursing team in post-op and, even on the urology floor. We have ostomy nurses available in the first months to get patients informed on how to manage their diversions.”
Another thing that Dr. Hahn felt was instrumental is that Anne brought members of her family and her support system to each of her visits. It was very clear from the beginning that if Anne needed some help, or if she was having a down day, there were people there that she could lean on when she needed them most. “Anne’s overall attitude and the way she carries herself in everything that she does put her in a position to have the best result. So I think that can be a real example to others,” he said. He went on to share some observations and suggestions other patients can use to be active participants in their care.
Don’t be afraid to be in the game. It is your healthcare. That is what Anne did from the very beginning.
Anne would be the first to admit that she doesn’t have all the answers. There are days when she’s down but she’s not afraid to jump in and be a part of the process.
I think every patient may have something in their life that they can draw strength from like Anne did with dancing. We need patients not to be afraid to come off of the sidelines and be a part of their care. She is a good example of how beneficial that can be.
Patients should be proactive and just ask their physician, “We have talked about what we’re going to do for my treatment plan, and I do have a few concerns I’d like to talk about with you. They have to do with some of the goals of my life and the direction we are heading with my healthcare. Would it be okay to talk about that?” I think that can be very productive. But I would encourage patients to feel comfortable bringing it up.
“Anne is incredible, and every time she comes back to the clinic, it is a big pick me up when I see her name on the schedule because I’m thinking, all right, this is going to be good.”