Two women with breast cancer, trained in how to evaluate medical evidence, thought this story wasn’t as good as the Associated Press or New York Times stories. It is vital to see news stories as people most affected see them.
Among our reviewers’ biggest concerns about this story were:
Women with breast cancer need facts and data to make good decisions about breast cancer treatment. Including phrases such as “a dream come true” inflates the true benefit of this research.
The story did a good job discussing costs.
This story was reviewed by two breast cancer survivors, both trained in how to evaluate evidence by the National Breast Cancer Coalition’s Project LEAD training. In addition, one earned her PhD in epidemiology. Here’s how they reacted:
Benefits were confused from the beginning of the article. Assuming all breast cancer patients have the same profile and benefit is misinformation. For example, the Young Survival Coalition sent out a statement to members that pointed out:
Overall, the patient population in this study tended to have low nodal involvement and most participants were over the age of 45 at time of initial diagnosis. 53% of the 10-year group were node negative and 54% of the five-year group were node negative. Only 16% of both groups had four or more nodes involved. Also, only 19% of the 10-year group and 18% of the five-year group were under age 45 at time of diagnosis. In both the five and 10-year group, 89% of study participants were postmenopausal at time of their entry into the ATLAS trial. In the five-year and 10-year groups , 47% and 48% of patients respectively had tumor sizes ranging from 1 to 20 mm (equivalent to 2 cm or under), while 39% and 38% respectively had tumor sizes between 21-50 mm (2 to 5 cm).
Women with breast cancer look for this kind of detail in order to make the findings meaningful in their lives. There are ways to summarize this data in a way even in a daily news story.
Allowing the study author to use the word “cure” in an unchallenged manner is troublesome.
A major omission from this story was survival benefits were not seen until years AFTER tamoxifen treatment had ended (rather than during treatment).
Mixed bag – but we’ll give the story the benefit of the doubt.
- The story presented some of the harms clearly, including one patient’s viewpoints on the personal, physical and emotional costs of continuing tamoxifen (e.g., severe hot flashes, dry eyes, joint pain, weight gain, “dryness that made sex unbearably painful”)
- It reported “doubling the length of treament also doubled the risk of endometrial cancer”
- It said “doctors saw no increase in strokes, which has long been a concern with tamoxifen.
Room for improvement:
The story provided only one woman’s tale of side effects. It provided no estimate of how often these occur. And the Young Survival Coalition pointed out another age-specific concern in the statement it released:
Finally, a particular concern with this study is the impact that this study may have on young women’s family planning. Many young women already wait until they have completed their five-year course of Tamoxifen before trying to start a family. Will this study cause that delay to become 10 years? And, are the modest benefits shown in this study worth that? That is a very personal decision and again, we recommend speaking with your physician.
There was no independent analysis of the quality of the evidence. Quoting a researcher who led tamoxifen’s development saying “This is a dream come true for women. It’s very exciting” doesn’t amount to an evaluation of the evidence.
In addition, the two women with breast cancer who reviewed this story noted that women who are interested in learning more were not even told that this study was published in the Lancet. They were only told that it was presented at the San Antonio Breast Cancer Symposium. Both the competing NY Times and AP stories – which we also reviewed – mentioned that the story was published in the Lancet. So interested parties who read those stories would know where to go to find more information.
There is no evidence of disease-mongering.
THIS IS A CORRECTED COMMENT IN RESPONSE TO A COMPLAINT BY THE REPORTER OF THE STORY – HER COMMENTS IN THE COMMENTS SECTION BELOW.
WE INITIALLY SAID THERE WAS NO QUOTE FROM ANY INDEPENDENT EXPERT NOT CONNECTED TO THE STUDY. THAT WAS INCORRECT.
HOWEVER, OUR CRITERION IN THIS CATEGORY READS: “In order to get a satisfactory score on this criterion, two things must occur: There must be an independent expert source quoted (someone not directly connected with the research) and there must be some attempt to let the public know about potential conflicts of interest.”
AND WE POST MORE BACKGROUND ON THIS CRITERION HERE.
This story DID NOT include reference to partial funding of the study by AstraZeneca, which produces a brand of tamoxifen. The competing stories by the NY Times and AP did report on AstraZeneca funding. AP went further in pointing out that the study leader “has been a paid speaker for a company that makes one of the drugs.” So the score remains unsatisfactory despite our initial error (corrected) on the first point.
The interview with the administrative director of the Johns Hopkins Cancer Survivorhip Program about her own experience with tamoxifen use added important perspectives. (The reporter apparently missed that we referred to this in a positive note all along.)
The two women with breast cancer who reviewed this story found one good point, one weak point in the story on this criterion:
Availability is well-established in the story.
It’s clear that the story did not rely on a news release.