Be An Empowered Patient: Ask Questions

I just returned from  accompanying a client to her initial radiation oncology appointment.  My client has breast cancer and has gone through chemotherapy and surgery.  Next step radiation.

I have watched her navigate this journey with class, dignity, integrity and LOTS OF QUESTIONS.  She has never agreed to proceed with an any aspect of treatment until every concern and questions has been addressed.  She has had many doubts about the information given to her.

Her questions are always thoughtful.  She reads the information online, talks to cancer experts and survivors then formulates her questions.  She was originally misdiagnosed and told she had no cancer allowing the cancer to spread to her lymph nodes over a year.  She told me she no longer has the option to automatically believe or trust what she is told.

Since the  diagnosis, she has been in charge of  her treatment.  Her first decision was which cancer center should I go to?  She interviewed  oncology teams at  several Boston cancer centers. Part of her decision was based on how the team answered her questions.

The next immediate decision was, which to have first,chemotherapy or surgery? Although the research shows good outcomes from chemotherapy first, she had to be convinced it was the right choice for her.

She listened very closely to the answers given her.  If it didn’t make sense or she disagreed with the information, she was quick to delve deeper.  At first, the doctors brushed off her inquiries but soon they realized they had to be prepared and ready to answer in a very detailed way.  She needed to know why it was best for her.

At today visit, the doctor was explaining  the radiation would be in three places and how it would be marked.  My client listened and then said, What if I only want one area irradiated? I could tell this question, befuddled the doctor.  My client didn’t think she wanted anything done on her chest wall because of the risk, no matter how low, of another tumor.  The doctor didn’t know how to respond.  Instead, she said they would revisit it on the next visit.

The bottom line is my client isn’t convinced about radiation.  What she will do is continue to ask questions, consider all the information and make a decision she is comfortable with.   I support her approach.  I appreciate the work and persistence it takes to get answers and be empowered in one’s own  care.  I know it puts off some medical people, but in the end, she has given them the opportunity to be better professionals.