| Q&A of the Week: Are Germ Cell Tumors Genetic? | |
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Mary writes: I have a concern that my Doctors have failed to address. [Mary describes bloating, bowel symptoms, and menstrual problems, the latter apparently thought to be associated with perimenopause. She has been diagnosed with irritable bowel syndrome. She is 47.]
The thing that really bothers me is that my younger brother was diagnosed with testicle germ cancer last June. [The prognosis is poor.]...The problem I have is that I have found out in my studies of germ cancer that it is the same form of cancer that causes ovarian cancer. My question is should I insist that my Doctor give me the CA-125 test or just trust the pap tests. My brother complained of problems a year before his Doctor decided to check.
Hi, Mary -
There are quite a few different types of germ cell tumors (that is, tumors that come from the tissues where eggs and sperm are made), and you are right that most of them have corresponding tumor types in the ovaries and testes. Some researchers even think there are some common origins to these tumors. I hear you asking two questions: 1) Does your brother's testicular cancer put you at greater risk for germ cell tumors, and if so, should you take extra measures? 2) Are your symptoms likely to be ovarian cancer?
As far as I have been able to determine, germ cell tumors are not thought to have an inherited component. Most of the inherited gene mutations associated with ovarian cancer, such as the BRCA mutations, are associated with epithelial ovarian cancer, which arises from the covering of the ovary rather than the germ cells. Furthermore, the epithelial types are much more likely to raise CA 125 in the blood, making that test especially poor at picking up germ cell tumors.
Additionally, germ cell tumors (again depending upon type) occur mostly in young men and women. The most aggressive types (non-seminomas for men and nondysgerminomatous tumors for women) are even more likely not to affect people in their 40's, as they are rare in women over 30 and men over 35. Seminomas (men) and dysgerminomas (women) can occasionally occur in middle-age, and generally carry a better prognosis.
As to your symptoms, you seem uncomfortable with the explanations given to you by your doctors. Any time a person has doubts about how completely their symptoms have been explored, I think it's time for frank discussions with the doctors. Get very clear about their understanding of your symptoms and their causes, and whether all avenues for diagnosis and treatment have been explored. Also, be aware that Irritable Bowel Syndrome is a so-called "diagnosis of exclusion", meaning that it is a label for when no other explanation for certain intestinal symptoms can be found.
If, after having these discussions with your doctors, you are not satisfied, please seek another opinion. In particular, a woman with symptoms of abdominal bloating and bowel changes (for whom there is no other clear explanation) should generally receive this trio of diagnostic tests: pelvic exam with recto-vaginal component, transvaginal ultrasound, and CA 125 blood test. Pap tests only rarely give clues to ovarian cancer.
Best wishes to you and your brother in this difficult time.
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