Genetic roots of family health – journalist Carol Krause – Genetics Special Report – Interview
When journalist Carol Krause spoke at a local medical seminar about the link between one’s family and inherited disease, we promptly invited her to appear on our “Saturday Evening Post Health Show.” Krause’s account of surviving the threat of cancer that runs rampant in her family tree is a story that everyone ought to hear. Now that the genetic components of many diseases are surfacing, knowing your family’s medical history is becoming the key to early diagnosis and treatment. We talked with Carol Krause about her crusade to reeducate others about genetically inherited diseases.
Post: Many of us have had relatives die of cancer or heart disease, but we don’t usually associate their deaths with risk to ourselves. How did you discover you were in danger from inherited disease?
CK: Many people in my family over the years have died of cancer. But there were all different kinds of cancer. We just assumed that none of them were related and that it was just a fluke in our family. Of course, for years, nobody really understood that cancer can be inherited. But then, about five years ago, my 38-year-old sister, the youngest of four, was diagnosed with ovarian and endometrial cancer. We were devastated. We assumed cancer meant death. We were also told by her doctor that the rest of us could be at risk because our mother also had ovarian cancer and died from it. That’s when we other three sisters began trying to find out what we could about our family’s medical history. It took a lot of time and effort.
Post: But what you found out really paid off.
CK: Yes. Based on my family tree, I had a lot of diagnostic work performed. At the time, I didn’t have any symptoms, but two early-stage cancers were discovered, one in my colon and one in my breast.
Post: So you had surgery to remove these early tumors?
CK: Yes. I also had prophylactic surgery, a hysterectomy, because of the ovarian cancer in the family. I never even had to have chemotherapy for any of my cancers. They were caught early, and it’s only because I knew my medical family tree.
Post: What a shame that Gilda Radner couldn’t have known what you did. She might be with us today.
CK: That’s right, but her story helped a lot of people and even educated the medical community. Knowing family history should mean earlier intervention, and Gilda’s symptoms were ignored. With two first-degree relatives with ovarian cancer, your chances are 50 percent of having it yourself. Those are odds I don’t like very much.
Post: Having a hysterectomy without having symptoms couldn’t have been an easy choice for you.
CK: I had already had one child. I was hoping to have another, but my obligation was to lead a full life for my first child, so I had the hysterectomy. Now I’m fine. I feel in control. I don’t know what my future health situation will be, but I feel that I’ve done everything I can do, and so I can rest easily.
Post: Tell us about your book.
CK: This has become a very passionate cause of mine. I know there are lives out there to be saved if people will just look back a couple of generations and do a little legwork; my book helps them do that. It helps them cut through the corners that I had to fight through. It’s very simple to do, mainly sending away for death certificates. I tell people how to do that. I even have sample letters in the book and the addresses to send to. Once you get that information, you take it to a specialist in the illness that’s most prevalent on your family tree and get an evaluation.
Post: What are the odds of inheriting diseases from your close relatives? from your close relatives?
CK: You have 50 percent of the same genes as your first-degree relatives. You get 50 percent of your genes from your father and 50 percent from your mother. If they have a genetic disease, you have a 50 percent chance of inheriting it. You get 25 percent of your genes from each grandparent. You also share 50 percent of genes with your siblings–unless, of course, you’re an identical twin–and then you share 100 percent of the same genes. People ask me why identical twins don’t look 100 percent alike. That’s because genes can mutate a little bit in the embryo. But basically, you’re sharing 100 percent of the same genes if you’re an identical twin.
Post: How about aunts and uncles and great-grandparents?
CK: Aunts and uncles are second-degree relatives. You share 25 percent of the same genes. You share 12 1/2 percent of the genes with your great-grandparents. There’s still a chance that a cancer gene could slither down to you, so it’s very important to know what diseases they had. It’s that simple. And then you can be prepared.
Post: We are reminded of Norman Rockwell’s Post cover, “Family Tree,” that traced a young boy’s family back to pirates.
CK: My family tree isn’t quite as attractive as his, I’m afraid. We have quite a few bad genes in my family tree. But we have some good genes, too–we are survivors. My sisters and I are all still alive and well, even though all three of us have had cancer. We were very healthy going into all this. That’s the irony of it. Then cancer hit us at ages 38, 40, and 42. But because of our medical family tree, doctors acted very quickly and very aggressively, and we’re all fine now.
Post: You went directly to specialists?
CK: You have to go to specialists. You can’t rely on your family doctor to completely evaluate your family tree. A family doctor is a great place to start. Let your family doctor know, but get a referral to a specialist in the disease most prevalent on the family tree. Post: Are there any major medical centers in the country that specialize in family genetic diseases?
CK: If you go with a major university hospital, you’ll be in pretty good shape because genetics is studied in most of those hospitals. It’s really worth it, even if it means you have to drive four hours to get to one. If you can’t get to a major university hospital, then go to a major medical center. Not all major medical centers are connected with a university. I would not rely on a community hospital to be the sole evaluator of your genetic situation. Not all the information has filtered down to that level, although community hospitals are fine places to receive treatment.
Post: In your case, the evidence of hereditary cancer was quite apparent.
CK: Yes. All my aunts and uncles died of cancer–every one of them. Two of my four grandparents and both of my parents died of cancer.
Post: But these were different types of cancer?
CK: Yes. One of the things to remember is that many cancers can be related. This is very important. For example, if you see two or three different kinds of cancers on your family tree, you might not think there’s a pattern, but there may be. My family has what’s called the Lynch 11 syndrome: ovarian, uterine, and colon. Those three are definitely related. If you have any one of those cancers in your family, you’re at risk for all those cancers. It’s not necessarily genetic, but you need to have it evaluated to see if it might be genetic in your case. They are also now linking some pancreatic cancer, melanomas, and possibly kidney and lung cancers to this same syndrome. It’s still unclear how many cancers fit into this syndrome, but we have all of those cancers in my family.
Post: Did you have lung cancer in nonsmokers?
CK: Yes. We have one case of that. Obviously, if they’ve been smokers, it’s really hard to tell the genetic situation. In other areas, the genetic connection is obvious. My uncle died when he was 51 from pancreatic cancer. His daughter, my cousin Barbara, got pancreatic cancer when she was 51. Now, that has to be a genetic connection. It’s tragic for Barbara, but because doctors knew her medical family history, they were very aggressive in her treatment, and even though pancreatic cancer is a killer, she’s alive four years later. They’ve been able to manage the disease for a period of time, only because they were looking out for it.
Post: Because cancer metastasizes, in your work, don’t you have to trace it to its original site?
CK: Yes. You find out where it began and at what age. The age at onset is far more important than the age of death. The younger the onset, the more likely it is genetic. You think of cancer being a disease of people who are 60 or 70. If you’re getting cancer at 40 or 50, it could have a genetic component.
Post: What are some of the best centers for genetic diagnosis?
CK: Columbia Medical School at Columbia University in New York City is a wonderful place to go; Cornell and Memorial Sloan-Kettering Cancer Center in New York City are fabulous. Also, the Indiana University Medical Center in Indianapolis has an umbrella clinic for familial disease that is very user-friendly. It’s a place where you can go no matter what kind of cancer you have on your family tree, and they will evaluate it.
Post: But there are other genetic diseases besides cancer.
CK: Yes. Any kind of disease can crop up on your family tree. If it’s heart disease, you need to go to a heart institute. Heart disease can sneak up on you. There are genetic elements, and you may not be sure if the disease is genetic. It’s harder to evaluate, and that’s where the medical family tree is critical.
Post: Genetics is the field of the future.
CK: This is an incredibly exciting field, not only for medical but for behavioral reasons. For a long time, we believed that behavior was just environmental, but now we’re beginning to see that there are probably genetic predispositions to all sorts of behavior. We have 100,000 genes in the body, approximately. There is now a worldwide effort by scientific detectives to map what each of those genes does. Some of them impact the way we react to things. They impact our behavior. They now know there’s a shyness gene. Some people have a tendency to be shy. Genes give us our strengths, and they also provide us with some of our weaknesses. The knowledge we gain about genes, I feel very strongly, is good. It will empower us to take good care of ourselves.
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