1) I have neurological symptoms that nobody can explain, could they be a PND?
PND are uncommon, therefore, most patients with neurological symptoms that nobody can explain have disorders that usually are not PND. When symptoms have been developing slowly over many months, the possibility of a PND is even less likely. Evaluation by a neurologist who will request the appropriate tests depending of the type of symptoms, clarifies the cause of the disorder in most patients.
2) All tests that my doctor requested, including paraneoplastic antibodies, have been negative. Does this rule out the possibility of a PND?
The answer is no. There are many PND that occur without paraneoplastic antibodies. In these situations the diagnosis requires a careful clinical examination by a skilled neurologist.
3) I have been diagnosed with a PND, but I have been told that there is no treatment. What should I do?
While there are many uncertainties of how to treat some PND, there is increasing evidence that many of these disorders respond to immunotherapy, if this is started early, and if the tumor is also treated. The response to treatment varies with the type of PND and the length of time that the patients have had neurological symptoms. The longer the patients have had symptoms, the less likely they will have neurological improvement. In many instances only stabilization (or no further progression of symptoms) is obtained.
4) I had a cancer diagnosed during the last 5 years. The cancer has been in remission but recently I developed neurological symptoms. Can these be paraneoplastic?
There is a high possibility that the symptoms are not due to a PND. There are many neurological complications that patients with cancer can develop. Some of these are related with the cancer, others are due to the treatments given for the cancer, and others are related to other diseases and have nothing to do with the cancer. The suspicion that the neurological symptoms are due to a PND should be high if 1) the clinical picture resembles one of the classical PND (this is usually decided by the neurologist or oncologist), and 2) no other causes of the neurologic problems are identified. In this situation the physician usually requests testing for paraneoplastic antibodies, which if positive will confirm that the symptoms are PND. However, if the testing is negative it does not exclude the possibility that the symptoms are due to a PND. At this point your doctor may confer with an expert in the field of PND. In any of these scenarios, careful evaluation for cancer is warranted.
5) I have symptoms of PND and I tested positive for a paraneoplastic antibody but a cancer has not been found. What is the next step?
The next step should be to review what tests were done to look for the cancer. Sometimes the type of antibody indicates the most likely cancer and this helps the physician decide what additional tests should be done. For example, if the patient is a man younger than 50 years, with symptoms of encephalitis and the antibody is anti-Ma2, an ultrasound of the testes should been obtained because this combination of neurologic problems and type of antibody suggests the presence of a cancer in the testes. If the patient is a woman with anti-Yo antibodies, a mammogram and CT of the pelvis should be among the initial tests to be obtained because cancer of the breast and the gynecologic (reproductive) organs are the most tumors more frequently associated with this antibody. If these tests have been obtained and are negative, then a PET scan of the whole body should be considered. If all above tests and a PET scan are negative, then the patients should be seen and tested every 6 months for at least 5 years.
6) My doctors suspect that I have a PND, but all antibodies have been negative. Are there further studies that can be done?
Yes. Some PND are frequent but others are extremely rare. A hospital that has physicians and scientists who are doing clinical and basic research on PND may be able to help by carrying out specialized evaluations and studies.
7) Do children develop PND?
Yes, some PND may affect children or teenagers. For example, paraneoplastic opsoclonus and myoclonus is a disorder in which the eyes move uncontrollably and patients also have jerky movements of muscles. When children develop opsoclonus and myoclonus they almost always have a tumor called a neuroblastoma. This syndrome can also occur in adults with other types of cancer, or without cancer.
Another recently discovered PND affect teenagers or young women causing severe encephalitis (sometimes mistaken for a psychiatric illness or drug abuse). These women usually have a tumor in the ovary called a teratoma. Removal of the tumor and treatment with immunotherapy often results in recovery, but if the disorder is not recognized, patients can become seriously ill and may not recover.
8) What should I do if I want to be seen at you Institution?
Call 800-789-PENN (7366). Josep Dalmau, MD of Penns Abramson Cancer Center is a world recognized expert on PND. Dr. Dalmau, is supported by a multidisciplinary team of experts in radiology, and pathology, as well as, medical, surgical, and gynecologic oncology. As part of the University of Pennsylvania Health System you will have the of one of the nations foremost medical centers and can address all of your medical needs.
9) How can I help to advance research on PND?
You can help us to find out more about prevention, diagnosis, treatment and cure of PND by supporting the Abramson Cancer Center and Dr. Dalmaus research efforts. To find out more visit our Making a Donations page.