Joan
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Joan has lived through several types of cancer, including breast cancer, colon cancer, and bladder cancer. She underwent genetic testing and found out she has Lynch syndrome and a RET gene mutation. Learn more about Joan’s experiences with Cancer Risk that Runs in Families here. After Joan’s colon cancer diagnosis, which “was much more advanced than one would have expected,” she joined a clinical trial because she “fit the profile” and would “do anything to reduce the changes of recurrence.” She participated in the trial for “three or four months maybe,” as a “cocktail added on” to her regular treatment, and then was monitored for years after. Joan was regularly asked about side effects, which made her feel like she was “complaining.” However, her nurse gave a chart where she “was able to log it” which allowed her to move on and “not focus on it so much” which was important because Joan believes in “the power of positive thinking.” Since Joan participated in the trail while she had chemo, she couldn’t attribute the cracked nails and neuropathy to one or the other.
Eventually, the trial was “discontinued” because it “wasn’t doing what they were hoping it was going to do” and “the side effects outweighed the positive effect.” Despite it ending, Joan is “absolutely” glad she participated in the trial and doesn’t “regret it.” Joan wanted to participate in the trial for several reasons: “if it would give” her even “a percent less problem” then she was “going to do it” and because she “would be helping people.”
Joan says she focused on her symptoms more than usual when she was in a trial.
Joan says she focused on her symptoms more than usual when she was in a trial.
Right, so the nurse will come in every time I had chemo, and ask me what all my side effects were. And I said to her, “You know, I feel like I'm complaining by telling you all this.” And she said to me, “Well, just think about it like it's a science project.” So that was a lot better.
And so, for me, the best way to do it was she gave me a chart. And then I was able to log it. So, then I didn't feel like I was complaining. But because I don't like to focus on that stuff. Because I think that it's just the power of negative thinking. And if you just can move on and not focus so much on it, then it's better.