A talk with Dr. Chowdhary

One of the very cool benefits of the Florida Brain Tumor Conference, was that we participants were afforded the opportunity to speak one - on -one with a doctor of our choice. I had the great pleasure of speaking with Sajeel Chowdhary, MD. Dr. Chowdhary is a board - certified MD, and assistant member of the neuro-oncology department at the H. Lee Moffitt Cancer and Research Institute. Moffitt is part of an elite group National Cancer Institute (NCI) Comprehensive Cancer Centers. Dr. Chowdhary is an assistant professor at USF, department of medicine/oncology services. He has written six publications, one of which pertain to ependymomas:

http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=16942674&dopt=Citation

The purpose of meeting with doctors was to discus ones own medical situation, but since I am almost 13 years out (next week!), I asked Dr Chowdhary If I could represent the ependymoma group, and record the session - to which he gratefully agreed to. What follows is that meeting (or - as close as I could get from listening to my piece of junk recorder!):

Saturday, January 19, 2008

Me: "Do you have time for some questions?"

Dr: "OK!"

Me: "I have asked the NIH, NCI, ABTA, NBTF and others. Are ependymomas gliomas?"

Dr: "Ependymomas ARE gliomas, as are astrocytomas and oligodendrogliomas., but they are treated differently. But, by definition, they are gliomas. The surgery aspects are similar, but the kinds of follow-up care are different.

Me: "I have a doctor that I ask questions to weekly, and he has stated that ependymomas are not gliomas, they are totally different."

Dr: "Well, in that way, he is totally correct. They are very different."

Me: "In my case, I was treated and released, and that was it! I knew I would need to see a neurologist, but I didn't know what else to do - who else to see. Who should the survivor go see? Neuro-psychologist? Neuro-opthalmologist?"

Dr: "A neuro-oncologist would be your best choice for follow-up. But, if you don't have one in close proximity to where you live, then you may see an oncologist every six months or every year (being that you are stable), but you need somebody to see you on a 3 month basis or 2 month basis if something happens. Probably a neurologist would be the best person to see.

Me: "Would there be a benefit to see a neurologist as opposed to one of the others?

Dr: "The big benefit I see is that patients can be followed by the neurologist, then come and see a specialist is need be...if there are problems detected."

Me: "This is my own procedure. On my annual MRI, I am seen by a neurologist. In my way of thinking, if he ever does see anything, I will step - up to somebody a little more...

Dr: "Sure"

Me: "Does that seem logical?"

Dr: "As long as you are sure the MRIs are being done on the area of the brain where your tumor was, and if everything is coming back to be stable, you should be in good shape. And then, if anything does happen, you can come in to your neuro-oncologist."

Me: "Would you recommend a neuro-psychiatrist?"

Dr: "It really depends. It depends on what you feel your challenges are."

Me: "After this many years, is it going to benefit me at all?"

Dr: "Well, actually, you have a good point there, because most psychological effects of the brain tumor will plateau off. Unless you have a high anxiety component, and depression for instance must always be treated at any moment in time. But, I don't think seeing a neuro...

The only thing I can think of is to get a baseline neuro-psychiatric test. Again, I would have rather had that when you were first diagnosed - before you started radiation and so on...have a baseline so they can tell what damage may have happened. But, at this moment in time, getting a baseline, unless you want to track your progress, I don't think you'll have much benefit. If you have some difficulties, probably seeing a psychologist would be better."

Me: "Chemotherapy is pretty ineffective against ependymomas, I have been told, and I would like to know why?"

Dr: "It is probably the weakest link, I would say. In ependymomas, a good surgical resection is the most important thing. That;s the hardest hitting component of the whole treatment spectrum. Radiation is the second hardest hitting component. Chemotherapy is the weakest link. I wouldn't say there is no role, we have data and a variety of experiments, and personal experiences of treating with chemotherapy. I would assume you did have some form of chemotherapy?"

Me: "No"

Dr: "You did not - it was just surgery and radiation. So, that begs the question about staging of the tumor - you probably had a spinal tap, or a slew of spinal taps at the beginning..."

Me: "I don't know..."

Dr: "Probably your CSF was negative, so you likely are one of those lucky individuals where your ependymal tumor was very localized. It is evident you had a good operation, and a good dose of radiation, and so at this point you are OK, so there is no role for chemotherapy for you at this time."

Me: "Should it come back..."

Dr: "Should it come back, then absolutely."

Me: "Mine was a fourth ventricular. How often should I have a spinal MRI?"

Dr: "Actually, that;s a real good question. For my patients, what I recommend is...there was never any spine disease to begin with, they are asymptomatic, there is no back pain or nerve related pain, your spine MRI is not that important unless you develop symptoms and something changes. Just "hang loose" and get your brain MRIs. And, ifsometime you notice anything in your back that you are worried about, at that point, I would recommend you get a whole spine MRI. Given how far you are in your case, there is no impending need for one now."

Me: "I had a grade II - which (as you know) is technically not cancer. What do I do when I go to the doctor's office, or fill out insurance papers that ask, "Have you ever had cancer?""

Dr: "So, that is one of the age - old questions, you know! If you step back in layman's terms and ask anybody on the road, "what cancer means to them?", they'll probably say, "it's an aggressive, bad disease, and you're probably going to die in six months to a year". So, if you look at that perspective, yes, you do not have cancer. But, you can tell them, "I don't have cancer", We don't use those terms in the world of neuro-oncology. But, you can say, "I had a low grade brain tumor which (if anyone can say they are in remission, you can, being 13 years out) Even though the term "remission" is not a classic term either, so I would say, "no". You can answer, "no" to that question and say, "I did have a low grade tumor.""

So, that's it folks. I am NOT a reporter, so I'm not sure I asked him the questions I should have.