low grade glioma? questions about neurosurgeon's response

[Aimster]

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)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

[artaran]

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
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[Aimster]

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)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

[artaran]

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
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[Aimster]

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)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

[jasbone123]

Hi,
I read your thread.I think the response of neurosurgeon's is quite mysterious.He must have some confusion about your case,it is possible due to low experience or less knowledge.He may not have proper conclusion for you.You should visit another neurosurgeon for your concern.

[brainman]

Hi jasbone123, while there is really nothing wrong with resurrection an older topic, notice that the last time Aimster posted to this topic was in January 2008. I do not even know if he/she even still monitors the forum. Point is, you may not receive a reply and if you do, he/she has hopefully moved on past this problem.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[papagnick]

Hi.I m from Greece.My name is Nick.I m 51 years old. I find this site by chance.I don t speak English well.I put on google "low grade glioma...." and I find brainmans posts. A few days ago I contacted a private message to brainman who was kind enough to answer.But I am very anxious depression and sadness and need help. Search the web for gliomas, magnetic images all the time.
My story:24 August 2009 when i was bent and remove heavy things in my office and i had a headache at the top of my head and squeezing. I never had any headache (like this at least). Because i was afraid for cerebral ishaimic (or not) episode at night i went to a hospital.The doctor said it wasn' t an ishaimic episode but because i was worried she said to me to do MRI.Next day 25 August i done MRI.From this day i m very scared and i had very big fear and fright.I have two daughters 15 and 18 who i must help to study.I want to live.

The MRI showed focal nodular alteration in the left parietal lobe than the parietal convexity, the left central somatosensory (aisthetic) propeller 0,8 cm (I think that is 1 cm), close to the slope. Located in the cortex and down to this white sub. It is round but I see in FLAIR that has a tail.Its left near the bone. It is high signal T2 and FLAIR - white-and very low signal on T1. It hasn t swelling, dont push,don t take on paramagnetic substance, has no restrictions on the dissemination.The opinion says is a non-specific finding (they cant say what is it -name) and recommended a new MRI after three months.Next day I ask the doctor who done MRI if this thing could be a cancer.She say yes, perhaps, it has image glioma but we dont know what is this.We can t to give a name.I ask if i could done somethig else (fasmatoscopy....) and she said no because is small and near to bone.And don t like that small ishaimic.
Next day I went to a good neurosurgeon director of neurosurgeon clinical in a public hospital.He see the flair and the inference and said :"it is nothing.perhaps you had this , you born with this or is a small ischaimic which don t exist after 3 months.Perhaps is a small meningioma".After that i vitit two others neurosurgeon.They are two of best in Greece and directors in not puplic hospitals.They said:"It hasn t interest for us.It isn t something for operation.It isn' t meningioma.One of this said i think is a small ishaimic - perhaps. I have 5 because i m older- it isnt sth bad.It isnt cancer.The other said it isnt like cancer, it isnt for me.Its better for you to see a doctor neuroactinologist(neuroradiation?) doctor who done MRI in brain.He gave me the names of two very good.They said it isn t liKe ishaimic.Perhaps Is something which i had from when I born OR is the begining of a low grade glioma.After that I visit a professor of radiology and a clinical radiological University.They say we can t give a name is a failure but we can not even give a name and you should be examined MRI again at 3, but to show what is best in 6 months. A few days after searching I found a book "Pocket radiologist -Osborn -Blaser-Salzman" that had pictures and comments from the 100 most important diagnoses Im very scared.I just found my own case description and picture (though slightly larger) in the pages referred to in low grade glioma.But the same was true for anaplastic gloioma.Mono biopsy singles.I visited the radiologist who did the translation of the book which is very good scientist and by chance located in the center that I done the MRI.He was thinking.He said it can be anything.I asked him even glioblastoma GBM and he said " Being so unfortunate?". I visited a young but very good neurosurgeon.He said the same.He told me that no neurosurgeon in the world will not do surgery because I have no symptoms.He said that is a key point of brain and after the surgery I would have Disabilities (I will have aisthetic problems to my right hand shoulder and face.....) I m almost crazy. I have depression. And this afternoon I start to feel symptoms in my right hand.Numb hands and especially my right. Maybe it's psychological.
I read to brain tumor foundation "Early detection and complete removal is the best, if not only, proven method of treating deadly tumor growth.
The only way to "cure" a cancer is to find and treat it early – before symptoms arise. Before it is too late.

http://www.braintumorfoundation.org/newearlydet.php

In Greece doctors wait Growing up the tumor and fall under the symptoms
, epilepsy etc.

Please help me.
My headache was ultimately irrelevant as that found in my head.

I have fotos in links.Is there any doctor in forum to see these?
http://www.dpgr.gr/usergalleries/displayimage.php?pos=-381218
http://www.dpgr.gr/usergalleries/displayimage.php?pos=-381224
http://www.dpgr.gr/usergalleries/displayimage.php?pos=-381217
http://www.dpgr.gr/usergalleries/displayimage.php?pos=-381216
http://www.dpgr.gr/usergalleries/displayimage.php?pos=-381219
http://www.dpgr.gr/usergalleries/displayimage.php?pos=-381221

How possible is to born with this?Its possible? Is There any chance;
Do you hear that from other people? Its possimple?It is likely to be focal cortical dysplasia? Its possimple to be FCD?

Is there any very good brain hospital or medical center in USA or UK OR other Europe where they could agree to send my MRI cd and get an answer? Can you suggest to me the best hospital for brain cancer and a very good doctor;
Please tell me which are the best hospitals (Ucla, Mayo clinic?...??)about brain cancer if is nececerry to make operation? I want a center that I can choose the standard one treatment and not experimentation.

Thanks a lot.