The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led advocacy group, and they recently released some highlights of their study on perceptions of chemotherapy vs. the experience of patients who actually underwent chemotherapy for a cancer in the last few years.  Because several membes have raised questions of whether the treatment is likely to be worse than the disease, I thought the results of this study would be of interest here and that members might want to add their own impressions. 

   The study was sponsored by Harris Interactive and sponsored by NCCS along with the large pharmaceutical company sanofi-aventis.  In November of 2007, they questioned 326 adults who had received prior chemo in the past five years for a “solid tumor” like lung or breast or colon and in contrast to “liquid tumors” like leukemia and multiple myeloma. It focused on attitudes toward chemotherapy before and after actually receiving it. 

   It probably doesn’t surprise people that 83% of participants reported being at least “somewhat fearful” about chemotherapy beforehand, but after receiving it 62% reported having had misconceptions about it and only 38% felt that their fears were justified.  It wasn’t completely trivial: 94% of patients reported some side effects, but only 14% reorted that chemotherapy was very difficult.  In contrast, nearly one third (32%) felt that chemo was easy or even very easy for them.  Importantly, 90% of those surveyed noted that chemo gave them hope, and 94% would recommend it to someone else with cancer who had been recommened to receive chemotherapy. 

  Part of the focus was also on communication about the treatment plan.  Only 44% of patients received written materials about their chemotherapy plan before treatment, while 78% who did not felt that a written plan would have been helpful.  A treatment plan was given to 35% of patients after their chemo had been administered.  Better communication appeared to improve the level of comfort that patients had with the chemo experience. 

   The survey is part of a larger survivorship program called Surviving with Confidence that includes a video of real patients discussing their cancer, chemotherapy, and survivorship issues that have followed.  This free video is available here.

   I think it’s important to emphasize that patients are all unique in not only their health but also their attitudes and tolerance of side effects, and chemotherapy options are as varied as different kinds of food.  It’s not appropriate to oversimplify that “chemo is well tolerated” any more than it is to presume that chemo is terribly punishing.  But for people who are wary about the feasibility of taking chemo, input from other patients who have been there should count more than my opinion, as someone who has never received it and who gives chemo for a living. 

   So for those of you who have experienced chemo directly, do the results of the survey resonate with you?