A woman finds a lump in her breast.
And for a long time, she doesn't tell anybody. Not her family. And not her doctor.
That happens all too often in low- and lower-middle-income countries, says Dr. Ben Anderson, a surgical oncologist who is the director of the Breast Health Global Initiative at the Fred Hutchinson Cancer Research Center in Seattle.
We spoke to Dr. Anderson to learn why there is hesitancy to report a breast lump in some countries. We also asked about a new study he co-authored, showing that the rate of breast cancer cases and the number of deaths from the disease are increasing in countries "undergoing rapid changes in human development," such as Colombia, Ecuador and Japan. The interview has been edited for length and clarity.
Why is breast cancer on the rise in economically developing countries?
We have known for a while that some Westernization factors are associated with increased breast cancer risk. And as Westernization is increasing around the world, we do see rising rates of breast cancer.
What's an example of a Westernization factor?
Women not having children until age 30. But this is a Westernization factor that we wouldn't want to change. And it's a low-grade risk factor.
So aside from the so-called breast cancer gene, are there other significant risk factors for breast cancer?
What we have are a series of low-grade risk factors. Obesity, for example, seems to be a problem, but I don't know of any diseases helped by obesity.
Any other reasons for the increase?
Part of this [increase in breast cancer] has to do with having more success with other diseases, in particular infectious diseases. As people live longer [in the developing world], women who would have died of something else, now more [of these] women are going to get into the age group — 40s, 50s, 60s — where breast cancers [often] manifest.
Is it possible the increase is due to more thorough screening?
When we instituted mammography in the early 1980s in the United States, we saw a significant rise in the diagnosis rates of early stage cancers. With any [new] screening program you're going to see rates rise. Presumably they rise to a new level, then even out.
What kind of increases are we seeing in the developing world?
The rate is rising in China up to five percent a year. That's a lot. This is why we have to start thinking of breast cancer globally, rather than as what many assumed incorrectly is just a problem of high income countries. The majority of breast cancers are in low- and middle-income countries today, and we have to be thinking how to manage [the disease] in resource-appropriate ways.
In your research, you've found that women in the developing world might find a lump in their breast and do nothing about it.
In some cultures, if a woman is diagnosed with breast cancer, it is assumed incorrectly there is something wrong with the family, and the fear is that the daughter of that woman would have difficulty getting married in a culture where marriage is a key element in a woman's success in her life. That's a big problem and leads to the mothers not seeking help [if they discover a lump].
How long are women concealing their breast cancers?
When you go to low-income and lower-middle-income countries, the great majority of women present with cancers bigger than five centimeters [approximately two inches]. We just did a report on Peru, where the women on average knew that they had had a mass in their breast for nine months; some knew they had a finding for ten years.
Why do these women not come forward sooner?
It might be they don't have access to the information [about where to go], and [they might think] if it doesn't hurt, what's the problem. Early breast cancers are painless lumps.
I assume it's not just in Peru.
I did work in Ghana in 2004, when we interviewed women to get a better understanding of why these cancers were all presenting so late. There were a variety of answers. One point was that if a woman was diagnosed with cancer, there was a fairly good chance her husband would divorce her and go get another wife. Here [in the U.S.] that would be a terrible thought and really unacceptable, but there are cultures where that's the way people look at it.
What would happen to a woman whose husband leaves her because she has cancer?
In Ghana, if you're the wife of a married couple, the family property is owned by the husband's family. If your husband divorces you, you have to move out of your home, you lose your social and economic status. You need to go back to your family of origin. If that's your environment, it's not hard to figure out why somebody wouldn't seek early detection.
You did your research in Ghana 11 years ago. Have things changed?
I do not think it's the same story today. It has been evolving and changing.
Why else might a woman stay silent about discovering a lump?
Cancer fatalism is a huge issue globally, most certainly not restricted [to the developing world]. In many cultures, the idea is cancer is fatal so [what is the benefit of finding] it early? The underlying assumption of screening and early detection is there is something I can do to change my future. And not all cultures believe that. Many cultures believe the fates decide — I've witnessed that in Middle Eastern cultures, in sub-Saharan African cultures. The idea that you can impact your own health, that's a very Western idea.
How do you change those attitudes?
What has become clear to me is that education may be the single most important tool we have. Women and the public have to understand why it is you would come for this early detection.
Yet detection is only the first step.
The misconception is that early detection saves lives. It's not early detection that saves lives, it's early treatment. You have to follow through with treatment, or early detection is just bad news.
What kinds of treatment scenarios are happening in other countries?
When we went to Ghana back in 2004, we would ask a woman, 'Why do you not go into the hospital [if you have a breast tumor]?' And what the woman would voice is, 'Why would you go to the hospital? They'll just cut off your breast and you'll be dead in two years, and maybe cutting off your breast kills you.' And problem was, the system was making this true. In Ghana, a surgeon would say, 'You need a mastectomy.' The woman goes with her family to collect money to get the mastectomy. And then that's it. The women weren't being referred for chemotherapy or radiation or drug therapy, or it wasn't available.
You've also done research in Ukraine, where you found that doctors were part of the conspiracy of silence.
When we started going to Ukraine in 1986, the doctors would say, "We don't tell the patients they have cancer.'
We'd say, 'Why do you not tell them?'
And they'd tell a story about someone who was told she had cancer and jumped out of a window. So [by not telling], they're protecting people from jumping out of windows. They'd say, 'You have a really bad infection and we're going to give you really strong medicine and your hair is going to fall out.'
Have things changed?
Westerners were telling Ukrainians you should do this differently. And they were like, 'What do you know about us?'
Then there was a conference in Kiev, and this woman stood up and said, 'My surgeon is in the audience. He's a wonderful surgeon. But you know what, you need to tell us we have cancer. We need to know this.' And her surgeon stood up and said, 'We really ought to tell people they have cancer.'
It's hard to believe doctors wouldn't tell a patient she has cancer.
It's important to remember that our culture [in the United States] was quite similar in the 1950s. You don't have to go very far back to times when it wasn't considered polite or appropriate to talk about breasts or cancer in public. Our liberation happened in the '80s — that's when groups like Susan G. Komen got started. We're not all that new at communicating about breast cancer.
Copyright 2015 NPR. To see more, visit http://www.npr.org/.
