For Twilah Richardson, 51, there was never any question that she would take the lead on her breast cancer treatment all the way through. "I can't imagine how one could survive this experience intact without taking control to the fullest extent possible," she says. As it turned out, however, being in charge sometimes meant learning to give in to the unpredictability of the disease.
Plan one: chemo plus lumpectomy
When Richardson's first surgeon recommended a double mastectomy after her 2007 diagnosis of invasive ductal carcinoma, she balked. "I wasn't prepared mentally to deal with a bilateral mastectomy," recalls Richardson, then 50.
She went for her breast surgeon's suggestion insteadto try to shrink the tumor with chemotherapy to make it small enough for a lumpectomy. "Because of the size of the tumor relative to my total breast mass, it would have been very disfiguring to take the whole tumor out [and not remove the breast too]. So when he mentioned the neoadjuvant option to me, I jumped all over that."
But things didn't go quite as planned for Richardson, who lives in Allentown, Pa.: The chemo failed to shrink the tumor. "Every two weeks I did the [Adriamycin and Cytoxan], and then following the fourth treatment, I went to see the breast surgeon again, and it hadn't had a noticeable effect on the tumor," she says. "The diameter was pretty much the same."
Plan two: double mastectomy
Richardson ended up having to have both breasts removed after all in June 2007. "I didn't want it to come back in the other breast, and I knew the cosmetic results [with reconstruction] would be better. My doctor said he totally agreed with me. His reasons were clinical and mine were emotional, but there wasn't a whole lot of emotion at the timeI felt cold and calculating about it, frankly."
Plan three: more chemo (plus radiation)
Richardson reinvented her treatment plan once again following an axillary node dissection in July 2007 that came back negative, when her surgeon pronounced her finished with treatment. "Then I went to my oncologist, and he said there wasn't any more treatment he could offer," she remembers. But Richardson wasn't done.
She went to the University of Pennsylvania and saw another oncologist, who recommended more chemo, which Richardson followed with 33 radiation treatments that finally ended in January 2008.
A bumpy but educational road back to health
Richardson weathered the ups and downs of treatment after learning one crucial skill, she says: "Being able to adjust to each twist and turn is critical. I learned that the oncologists don't really know much about this disease. They follow a prescribed protocol and have little idea about the outcome beyond the published stats."
As for what she learned about herself: "It's human nature to imagine the plan is straightforward, then to find yourself having to adjust as the plan changes because of new information. I learned that we humans are amazingly resilient and mentally capable of bouncing back from bad news."