It’s always instructive to see where other people are in their ideas and assumptions. YJ and I saw, with the whole Marrakech team present - Mr the Gynecologist, Mme the Pathologist our host, a bevy of students and young doctors interested in oncogenetics, an intimidating total of nine people - four families in consultation. Well, the first came as a family, the others one person represented the family.
We first spoke to a woman and three of her daughters. The matriarch, at 61, was the only one to have had breast or ovarian cancer in the extended family as far as we could tell. She’s relatively old, for Morocco, to have breast cancer, and without any other cases, there’s no reason to suspect a genetic origin for her malady. There’s a slight excess risk for her daughters, but very modest. In our own consultation, we would never have performed BRCA screening.
YJ explained that they should not be worried about a strong genetic risk, but for everyone to get mammograms regularly. A glance between us showed we were both thinking, well this is the reason there are no BRCA mutations in the group we studied: if this family is typical, we’re not studying the right people.
We first spoke to a woman and three of her daughters. The matriarch, at 61, was the only one to have had breast or ovarian cancer in the extended family as far as we could tell. She’s relatively old, for Morocco, to have breast cancer, and without any other cases, there’s no reason to suspect a genetic origin for her malady. There’s a slight excess risk for her daughters, but very modest. In our own consultation, we would never have performed BRCA screening.
YJ explained that they should not be worried about a strong genetic risk, but for everyone to get mammograms regularly. A glance between us showed we were both thinking, well this is the reason there are no BRCA mutations in the group we studied: if this family is typical, we’re not studying the right people.
.
The second case was a young woman. YJ started off asking about the family history, and it turned out that the only relative to have had breast cancer was a cousin of the woman’s father. Nobody else? Nobody with ovarian cancer? Nobody on the mother’s side? Well, it seems there really is no genetic risk at all.
The young woman has some questions about the treatment she’s been receiving, and we begin to perceive our error in not starting off with the right question. The 26-year-old facing us is herself the index case of the family. In France it’s exceedingly rare for breast cancer to occur so early; even in families with mutations it’s uncommon. This changes the whole picture. Yes indeed, there is a definite genetic risk, and although all the tests we’ve done so far have not revealed an anomaly, we will keep searching, by other means and in other genes, and will stay in contact.
The second case was a young woman. YJ started off asking about the family history, and it turned out that the only relative to have had breast cancer was a cousin of the woman’s father. Nobody else? Nobody with ovarian cancer? Nobody on the mother’s side? Well, it seems there really is no genetic risk at all.
The young woman has some questions about the treatment she’s been receiving, and we begin to perceive our error in not starting off with the right question. The 26-year-old facing us is herself the index case of the family. In France it’s exceedingly rare for breast cancer to occur so early; even in families with mutations it’s uncommon. This changes the whole picture. Yes indeed, there is a definite genetic risk, and although all the tests we’ve done so far have not revealed an anomaly, we will keep searching, by other means and in other genes, and will stay in contact.
.
The third family is typical of those we see in the west. Two sisters, breast cancer at age 37 and 44. Oddly, the older sister, who is not here today, never had any kind of treatment beyond the initial surgery. So we’re left wondering, was it really cancer, or a benign lesion? There’s no way to get this information. Even a single case at age 37, however, fits the criteria for BRCA analysis, so that’s two out of three good families. We seem to be more or less on the same page with our African colleagues.
The third family is typical of those we see in the west. Two sisters, breast cancer at age 37 and 44. Oddly, the older sister, who is not here today, never had any kind of treatment beyond the initial surgery. So we’re left wondering, was it really cancer, or a benign lesion? There’s no way to get this information. Even a single case at age 37, however, fits the criteria for BRCA analysis, so that’s two out of three good families. We seem to be more or less on the same page with our African colleagues.
.
The last family we see illustrates the tragic state of women’s health care in Morocco. In a family with several cases of breast cancer, the women saw for themselves the hereditary risk. Two years ago, the woman before us was dealing with her sister and niece being diagnosed with breast cancer. She went to her doctor for examination. She was told that the mammogram was normal, but that she had some benign ovarian problems causing cysts in her breasts that were nothing to worry about; they would resolve on their own. Reassured, the woman stopped doing self-exams. Six months later, she noticed a lump her breast anyway, and went back to her doctor, who again told her that it was nothing to worry about. Come back next year.
But she did worry, and insisted on having the lump, whatever it was, removed immediately. Reluctantly the doctor complied, and discovered on surgery not one, but two good-sized malignant tumors. The follow-up treatment continued the disaster, using radiation in a way that caused severe damage to all the normal tissue in the area treated. This poor woman’s trials are not yet over, though I sincerely hope she has changed doctors.
She had the original mammography films with her to show us. Even I, often at sea in looking at such images, could tell that the large white splotch was something fishy. Right there for any competent radiologist to see was breast cancer.
I hope I’ll be able to find the mutation in this family, but it may be difficult. Every person with breast cancer (the ones to study) is either in treatment or deceased. And we know from experience that collecting blood from a person currently undergoing chemotherapy gives very poor quality DNA. There are some new tricks coming up in the laboratory, though, and we’ll make it work.
The last family we see illustrates the tragic state of women’s health care in Morocco. In a family with several cases of breast cancer, the women saw for themselves the hereditary risk. Two years ago, the woman before us was dealing with her sister and niece being diagnosed with breast cancer. She went to her doctor for examination. She was told that the mammogram was normal, but that she had some benign ovarian problems causing cysts in her breasts that were nothing to worry about; they would resolve on their own. Reassured, the woman stopped doing self-exams. Six months later, she noticed a lump her breast anyway, and went back to her doctor, who again told her that it was nothing to worry about. Come back next year.
But she did worry, and insisted on having the lump, whatever it was, removed immediately. Reluctantly the doctor complied, and discovered on surgery not one, but two good-sized malignant tumors. The follow-up treatment continued the disaster, using radiation in a way that caused severe damage to all the normal tissue in the area treated. This poor woman’s trials are not yet over, though I sincerely hope she has changed doctors.
She had the original mammography films with her to show us. Even I, often at sea in looking at such images, could tell that the large white splotch was something fishy. Right there for any competent radiologist to see was breast cancer.
I hope I’ll be able to find the mutation in this family, but it may be difficult. Every person with breast cancer (the ones to study) is either in treatment or deceased. And we know from experience that collecting blood from a person currently undergoing chemotherapy gives very poor quality DNA. There are some new tricks coming up in the laboratory, though, and we’ll make it work.
.
This kind of situation may be widespread. Many women aren’t aware that a close relative having breast cancer, especially several relatives or young ones, means their own risk of breast cancer is elevated, perhaps extremely so. Even when women do know that something is up and they need to be cared for, they may not be taken seriously by their doctors. Family stories are seen as just anecdotes, not medical information. Many doctors are not competent in techniques relatively new here such as interpreting mammograms.
Things are changing, and my colleagues at the Mohammed VI university hospital are working hard to make them change. It’s a long road, though. There are about 3 million people in the Marrakech area. There is no oncogenetics department, or even an office. There is exactly one geneticist, to deal with all genetics not just cancer genetics, and she just arrived a couple of months ago. In the basement of the pathology building, my friend Jamal is just unwrapping some of the apparatus needed to do their own DNA extractions and the preliminary steps of genetic analysis. There’s a lot of willpower involved, the enthousiasm of a small group of people in the midst of an ocean of inertia.
This kind of situation may be widespread. Many women aren’t aware that a close relative having breast cancer, especially several relatives or young ones, means their own risk of breast cancer is elevated, perhaps extremely so. Even when women do know that something is up and they need to be cared for, they may not be taken seriously by their doctors. Family stories are seen as just anecdotes, not medical information. Many doctors are not competent in techniques relatively new here such as interpreting mammograms.
Things are changing, and my colleagues at the Mohammed VI university hospital are working hard to make them change. It’s a long road, though. There are about 3 million people in the Marrakech area. There is no oncogenetics department, or even an office. There is exactly one geneticist, to deal with all genetics not just cancer genetics, and she just arrived a couple of months ago. In the basement of the pathology building, my friend Jamal is just unwrapping some of the apparatus needed to do their own DNA extractions and the preliminary steps of genetic analysis. There’s a lot of willpower involved, the enthousiasm of a small group of people in the midst of an ocean of inertia.
1 comment:
Interesting. My Scientific American is always full of the genetic basis for cancers - and a wealth of other health problems.
Need to make a post about my Annie's experiences with mammograms, doctors, health care here in Virginia's Eastern Shore. Bad readings, unresponsive doctors (or offices), "lost" mammograms found by my wife after hours on the 'phone, etc. All ended well once we found a good doctor, no mass, no problems, but a lot of anxiety. Do we need to come to Morocco for health care ?
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