Published on August 27, 2020
Do Blood Cancers Like Leukemia and MPNs Run in Families?
Do blood cancers like CLL, AML or MPNs run in families? Do I have a higher risk of blood cancer if a family member has leukemia or an MPN? Andrew Schorr and Dr. Courtney D. DiNardo discuss how patients face the reality of a family genetic predisposition for blood cancer and what treatments are available. Dr. Courtney D. DiNardo’s clinical research focus pertaining to hereditary cancer predisposition syndromes has led to the development of the MD Anderson Hereditary Hematologic Malignancy Clinic, which now provides a clinical and research-based evaluation of underlying cancer predispositions and hereditary cancer syndromes in leukemia patients. Watch to hear the full discussion.
Transcript | Are Blood Cancers Hereditary?
Hello and welcome to Patient Power, I'm Andrew Schorr. We're visiting with Dr. Courtney DiNardo, who’s in the Department of Leukemia at MD Anderson in Houston and she has a special interest in studying hematologic malignancies in families.
All of us who are diagnosed with blood cancers, or any cancer really, but for me, chronic lymphocytic leukemia and then another blood-related cancer, myelofibrosis - I have three kids. So, I'm sure you're asked all the time and you're studying this, do we have to worry about family members?
I learned in training that there were no inherited blood cancer syndromes. People know pretty well about breast and ovarian cancer syndromes related to the BRCA mutations. There are colon cancer syndromes but the idea of a cancer syndrome related to blood cancers was really not something that was on anyone's radar screen but yet there are definitely patients and patients and families who have blood cancers throughout different generations or patients with multiple different blood cancers in that one individual. So, it's something that we've been aware of for a long time. It's only been really in the past decade that we've been doing routine sequencing analysis and molecular annotation, that we've realized that there are about a dozen genes or so. There are specific genes that can be inherited in families and run through families that can increase the risk of blood cancers. Most of the ones we know about right now are related to myeloid cancer syndrome. So MDS and acute myeloid leukemia.
There's kind of a subset of genes that are associated with long-standing platelet problems. So people will have kind of a lifetime of low platelets and sometimes clotting problems and then some family members will develop blood cancers. There's kind of another group of genes that are related to more of your immune system. Kind of a lifetime of kind of unusual infections or frequent infections and then some family members with blood cancers.
CLL is interesting. You mentioned CLL. There definitely is an increased risk of CLL in some families, so what we call like a familial CLL. There's only one gene so far, one called POT1 that's been kind of reliably identified to run in CLL families. That's few and far between so we still haven't really figured out what it is that is running in those familial CLL families and if it is just a single gene. So there's a lot of research that still needs to be done in this area but you're right, we're absolutely realizing there are hereditary, what we call hereditary heme-malignancy families.
Okay. So in breast cancer, people know that if they have the BRCA gene maybe they want breast removed or their ovaries removed. But in blood cancers, so if I came to your clinic and you found a certain gene was going on, what do you do about it?
That is the million-dollar question, right? Because it's not a solid tumor predisposition where you can surgically remove the risk. Right? So it's not like you can do a prophylactic mastectomy or oophorectomy or a colectomy. You can't just take someone's bone marrow away. We could go and do bone marrow transplants but that is a dramatically high risk and a procedure that is not indicated when you don't have a 100 percent risk of developing a blood cancer. You have an increased risk but it's not a lifetime risk. So these are super important questions. So what we tend to do is we see patients who most want to know, just ... the knowledge is power type argument. I want to know this information and I want my family members to have the opportunity to find out this information. So, we offer surveillance, meaning I see patients and I see individuals who have these what we call risk predisposition. So on like a once or twice-annual basis, we check counts, we make sure there's nothing brewing and surveillance bone marrows if people opt to have surveillance bone marrows.
So, there's definitely things we can do. But you're right, it's not a simple kind of surgical resection to decrease the risk. Some people get this information that there could be something running in the family, and they say, you know what if there's nothing we can do about it, I really don't want to know this information and that is absolutely the right of a person also. Because right now, we don't have any known affective preventative strategies and if the decision to undergo genetic testing is still absolutely a patient's prerogative.
While we don't necessarily have the preventative strategies, we do have the surveillance. And we do have effective treatment strategies for many conditions.
And there are so many people working on this that I have no doubt that improved treatment and prevention strategies are coming. I think that there are things to consider, especially in terms of a patient with a blood cancer that is undergoing therapy. The knowledge for that person that there is something potentially hereditary is important because oftentimes a transplant is that curative strategy for that patient with a leukemia and if they have a family member who’s their best stem cell transplant donor who has had low counts for years and it's just been ignored or not really seen as important. You know the last thing we really want to do is use a transplant from a family member who has the same underlying problem for the cure of the patient you're caring for. So there are absolutely really important reasons that knowledge and awareness of the fact that a small but real percentage of blood cancers can be inherited. I think is an incredibly important piece of information.
Dr. Courtney DiNardo, studying heredity hematologic blood cancers, thank you so much for your work. Keep at it, we want... those of us living with it really... you know, many of us do want to know and then see are any actions required or not.
That's exactly right.
Thank you so much for being with us. I'm Andrew Schorr. Remember knowledge is power and knowledge can be the best medicine of all.