Dr. Len’s Cancer Blog is experiencing technical difficulties, so we’re posting his entry from earlier this week here.
Dealing with a diagnosis of cancer remains a very scary, emotionally charged experience. That experience is not helped by the addition of conflicting advice, especially advice based on opinion and not evidence. And once in a while, that’s what happens when a celebrity is the source of the information, as has now occurred with Sandra Lee. But this time reporters are stepping up to address the issue on the record.
Many of you are familiar with the now widely available interview Ms. Lee gave with ABC’s Good Morning America anchor Robin Roberts, herself a cancer survivor who has openly shared her journey with the public. Ms. Lee told the nation that she has breast cancer, that a lumpectomy had positive margins, and that her doctors recommended a double mastectomy since she was a “ticking time bomb” in her words.
What the nation also knows is that Ms. Lee at the age of 48 was critical of guidelines that-in her words-tell women to wait until they are 50 to get a screening mammogram. She also recommended that women of all ages, even in their 20s and 30s, call their health professional now and get a mammogram. In short, all women “need to know” whether or not they have breast cancer.
A diagnosis of breast cancer is traumatic. A positive mammogram that turns out not to be cancer–what doctors call a “false positive”–is also traumatic, especially if a women has to endure the uncertainty of follow-up tests including additional x-rays and biopsies, which are certainly uncomfortable at the least and disfiguring at the worst. Younger women have a greater number of false positive mammograms, in part because their breast tissue is more dense making the reading of a mammogram more difficult.
People are entitled to their opinions. But when personal thoughts turn into public pronouncements it can create a sense of fear and a sense of panic that may not be warranted. Often, listening to what the science tells us can help us confront some of that fear. In this case what the science tells us is that screening women in their 20s and 30s who are at average risk of breast cancer would cause a great deal of harm and not much benefit.
It’s not that we haven’t previously recommended screening mammograms before age 40. In the past, organizations like the American Cancer Society thought that a “baseline” mammogram at age 35 would be a good idea. However that idea was eventually abandoned because of a number of factors, not the least of which is that it didn’t improve the outcomes for women in that age group. Going back to the future would not be a good idea. No science-based organization currently makes a recommendation that women who do not have a specific indication of increased risk such as a genetic mutation get a screening mammogram before age 40.
And then there is the question of what “they” recommend about not getting a mammogram before age 50.
The American Cancer Society and other organizations do currently advise that women at average risk get screened for breast cancer starting at age 40. The “they” in this case is the United States Preventive Services Task Force, which previously did say that the evidence did not support screening before age 50. However, in a recently released draft recommendation that same task force very clearly indicated that a screening mammogram before the age of 50 should be done if a women wishes to proceed following an informed discussion between her and her health professional about the benefits and harms of mammography. That is not a blanket condemnation of screening beginning at age 40. It is a recommendation that women be informed of the evidence and their options, then make the decision that is best for them.
Sitting where I sit, I not infrequently get inquiries from the media about celebrities with cancer. I try to be cautious and circumspect in my remarks, given that there is always information that is not shared with the public. Some celebrities are open about their disease; others prefer to keep it private. Some-such as Ms. Roberts-have educated millions about breast cancer and the sometimes unfortunate consequences of their treatment. Others share personal thoughts about their experience and include helpful information that empowers women such as the recent commentaries by Angelina Jolie. But when we start to invoke intense fear into the discussion and have young women start demanding potentially harmful medical procedures that are not evidence-based we don’t do the public a meaningful service.
Frequently celebrity comments go unchallenged. The news is the news, the cycle passes, and the world moves on. In this case, what was different were the stories that actually asked the question whether this advice was appropriate. Several stories–such as those in the Huffington Post, Forbes, and on the CBS network affiliate in New York City–offered some balance to the discussion. That doesn’t always happen.
As with everyone who is diagnosed with cancer and faces a life-changing journey, our thoughts and prayers for a safe and successful outcome are with Ms. Lee and her family. The decisions she made about her treatment are hers and hers alone to make, and are certainly made with information about her options. Perhaps not everyone agrees with the course she has chosen, but it is her course to choose.
However when it comes to sending a message to the country and the world about who should be screened and when they should start screening, we should use the opportunity to educate and inform about what we know, not what we assume.
Doctors are bound by the guidance to first do no harm. Hopefully we can learn from this experience and understand that when emotions conflict with science, we should allow the science to guide the moment.