low grade glioma? questions about neurosurgeon's response

Aimster · Regular Joined: 03 Jan 2008 Posts: 35 Location: Nebraska

I am in need of advice. I am 39 and in fairly good health, although I’ve had hypertensive complications during my pregnancies. In August, my internist ordered a brain MRI because of my severe headaches (they seem to be migraines, but he wanted the MRI just in case). That scan showed an abnormal area in the right frontal lobe – hypointense on T1 images, hyperintense on T2 and FLAIR images. The radiology report indicated that it didn’t appear to be stroke or MS, but could be infection, inflammation, or low grade tumor. I saw a neurosurgeon, who told us that it was probably a low grade tumor but not to worry about it, “if it causes problems we’ll just take it out”. Our meeting with him lasted about 5 minutes and he did not examine me at all (blood pressure was taken by a nurse, but that’s it). Recommended re-scan in 3 mo.

The followup scan was done in December. It took 15 days for the neurosurgeon to return my calls about the results. After waiting a week, I picked up my own copy of the radiology report, which says: "Again noted is an area of abnormal signal in the right frontal lobe measuring 15 x 22 mm. This has high signal on T2 and FLAIR images with low signal on T1 images and does not show significant postcontrast enhancement. It is essentially unchanged from prior exam. Impression: persistent abnormal area in right frontal lobe suspicious for low-grade glioma.” In looking at the images myself, I see hyperintense signal in that area on two other MRI sequences not discussed in the report (they are labeled "GM_only" and "DW_SSh_FL"); and a hint of signal in the "ADC" sequence.

When the neurosurgeon finally called back, he said it’s nothing to worry about and he doesn’t think it’s a tumor at all, but to re-scan in 6 mo. When asked what it might be, he said he didn’t know, but “it could be scarring – maybe you bumped your head as a child.” I asked if the radiology report had suggested other possibilities of what it could be (not mentioning that I’d already read it). He told me, “not really, just that they ‘can’t rule out glioma’ or something like that.” No explanation was offered for why he’d previously told us it was probably a glioma and now says it’s very unlikely to be, or why he apparently disagrees with the radiology report. He does not want to biopsy.

My husband and I don't have a lot of confidence in this doctor. We’re not sure if he is lying to keep us from worrying till a tumor is confirmed (which isn’t working, by the way), is correct but just sucks at patient interaction, or is clueless and blowing us off. We are researching options for a second opinion in Nebraska, but in the meantime we are interested to know if this is typical for consultations with neurosurgeons in my situation, and if this “bump on the head” he’s describing is a reasonable explanation.

Thank you so much for your input. We are anxious about this and feel very much on our own.
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

http://cancerforums.net/viewtopic.php?p=28526

artaran · Posted: Thu Jan 03, 2008 12:33 pm Post subject: low grade tumor?

You should definitely get a second opinion, even if you liked the doctor and trusted him. Any doctor of worth would have no problem with this. When my son was diagnosed with a grade III glioma last year, we got several opinions.

Still I doubt any doctor would feel the need to go into your brain for a biopsy for a tumor that small. The dangers of surgery at this point from my understanding of gliomas outweighs the risk, even if it is a glioma.

Nevertheless, I'd consider going to one of the hospitals known for their expertise on brain tumor--such as UCSF, DUKE, John Hopkins.

brainman

Hi Aimster, I can hear your anxiety and am so sorry about your current health concerns. As some who is very familiar with giomas, I do not think the doctor is lying to you... just reinterpreting the radiologist's report. After all "suspicious for low-grade glioma" and "can't rule out a glioma" are almost identical descriptions of the same thing. I would talk with my medical team about my concerns if I were you and after that, if you are still concerned, I would ask for a second opinion at a major medical center.

You are in my thoughts and prayers. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Aimster · Regular Joined: 03 Jan 2008 Posts: 35 Location: Nebraska

Thank you so much for your replies and encouragement. It's such a relief to be able to share my concerns with someone; we don't want to worry our friends and family so we are keeping this to ourselves.

The thing that puzzles me about the doctor is that he would tell me in August that it's probably a tumor but then say the opposite in December, when the data really haven't changed. I would be delighted to believe him if he'd talk me through the MRI images and explain the basis for his opinion, but he does not seem willing to do this. I am a scientist by training, and I deal with life by sorting through the available data and drawing logical conclusions - but I can't do that if I don't understand the data.

Do old brain injuries look similar to glioma by MRI? To my knowledge I've never had a concussion or head injury.
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

http://cancerforums.net/viewtopic.php?p=28526

artaran · Posted: Thu Jan 03, 2008 4:35 pm Post subject: low garde tumor

It's actually not that easy from an MRI to tell small tumors from scar tissue. He may believe it's scar tissue now because it isn't growing.

Still I think it's a good idea to get a second opinion to ease your stress and give you a better idea of what your situation and options are. I wish you the best.

Derek

Aimster,
I too have a scientific back-ground, and have always held by the idea that if something looks like and smells like something, it probably is it.
My wife's GP also said that the lesion that showed up on an MRI may not be a glioma, but some other pathology (eg old injury).
The neurosurgeon thought otherwise and went straight in for surgery, and confirmed the "tentative" diagnosis of the "lesion", (which was 4-5 cm) as a low grade glioma.
The jury however is still out on the best way to treat low grade gliomas, as they are still potentially, in fact most likely, very dangerous.
I would get a second opinion, as many neuosurgeons still want to take a wait and see approach, and do serial MRI's before doing any surgery.
Another experts thoughts on this are a good idea.
Derek

brainman

The fortunate thing about a glioma and a scar tissue is that neither metastasize. I think that fact gives doctors the confidence to take a "wait and see" attitude.

There are dangers whichever way you go. Like Derek said, there really is no consensus on how to treat low grade (especially grade 1) gliomas. The danger is that its grade can change over time. The danger of a biopsy, although reasonably low, are the same as associated with any brain surgery.

Very difficult decision to make.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Aimster · Regular Joined: 03 Jan 2008 Posts: 35 Location: Nebraska

Thank you so much for your input!

We have an appointment for a second opinion in a few weeks at the University of Nebraska Medical Center in Omaha. This doctor has done a fellowship in neurosurgical oncology at MD Anderson, and was recommended by a friend who is a neuropsychologist. Her qualifications are better than the neurosurgeon we've seen already, and I hear that her people skills are better too.

If she also feels there is no reason for concern at this time, yippee! We'll be happy to go with the wait-and-see approach. I am curious to see if she will order any tests for metabolic activity (PET, MR spectroscopy) that might distinguish between glioma and old injury.

The nearest brain tumor center is at Mayo, about a 7 hr drive. We won't plan to travel there unless this turns out to be glioma and they start talking treatment.
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

http://cancerforums.net/viewtopic.php?p=28526

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