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Thread: Undiagnosed lesion (possible glioma) on right frontal lobe - seek advise/experiences

  1. #1
    Newbie New User synaptonaut's Avatar
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    Question Undiagnosed lesion (possible glioma) on right frontal lobe - seek advise/experiences

    Hello everyone, hope you are having a beautiful day!

    Here's the rundown on my situation:
    A little over a month ago I had a seizure while I was at work. I ended up in a hospital where a CT, two MRI scans (one with contrast), and an EEG were performed. The MRI with contrast seemed to provide the most information and the following notes were dictated by the doctor:

    EXAMINATION: LIMITED MR SCAN OF THE BRAIN: 03/05/2011


    CLINICAL HISTORY: A 25-year-old male with a seizure. The noncontrast MR scan of the brain
    performed on 03/04/2011 demonstrated a large T2 and FLAIR focus of hyperintensity in the right
    frontal lobe. There was no evidence of hemorrhage or blood breakdown products.

    TECHNIQUE: Prior to the intravenous administration of contrast, a T1-weighted axial
    sequence of the brain was obtained. Following the administration of OptiMARK, 15 mL, T1-weighted
    axial and coronal sequences were obtained.

    COMPARISON: Comparison is made to the noncontrast MR study of 03/04/2011.

    FINDINGS: On the noncontrast T1-weighted axial sequence, there is irregular low central
    signal intensity surrounded by irregular mild hyperintensity in the right frontal lobe seen best on
    image #18. Following contrast administration, there is mild enhancement, primarily in the region
    of the T1 hyperintensity. There is little associated edema or mass effect. There is no
    displacement of the midline structures. There is no ventricular deformity. The major differential
    possibilities include a necrotic glioma and cerebritis/intracerebral abscess. A followup CT scan
    of the brain is recommended. Foci of calcification may be demonstrated.

    IMPRESSION:
    Mixed T1 signal of the right frontal lesion with probable minimal peripheral enhancement. No
    associated edema or mass effect. The differential diagnosis includes a necrotic glioma and
    cerebritis/intracerebral abscess. A followup CT scan of the head may be helpful.
    Four or five doctors have looked at the MRI with contrast results and the general consensus seems to be a low-grade glioma. One is a neurosurgeon/neurooncologist at UCSF and his recommendation was surprisingly not to just have a biopsy, but to surgically enter the area of the lesion and take multiple samples of the suspected area and then remove the dangerous stuff accordingly.

    I have not yet had a PET scan and I'm not very well informed of what alternatives I may have available. I know there are some people here with a great deal more experience and knowledge of these things than I, so what I'm really looking to ask here is: what would you do? What questions should I be asking my doctors before moving forward with the surgery? Should I push to have a PET scan done and a biopsy first?

    Also, I'm a very active person (cyclist, runner, etc) and I've heard cases of scar tissue causing seizures after a similar operation. Is this a common after-effect? How about weakness on one side?

    Thank you for reading! Please let me know if I have been unclear. I can provide images from MRI's to anyone who is interested.
    Last edited by synaptonaut; 04-07-2011 at 04:15 AM.

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    I'm very sorry to hear about your health concerns. My son was 23 when he had an MRI that suggested a low grade glioma. We went to UCSF and had it removed by Dr. McDermott. The biopsy revealed that it was actually a grade 3 astrocytoma, so we are glad we went forward with surgery. His tumor was large in the frontal and parietal lobes on his right side. He had temporary weakness but it lasted only a short time. He ran the Big Sur Marathon 3 months after his surgery and trained while on Chemo and radiation. Depending on the location of the tumor and your health and youth, you can come out of treatment still strong and healthy.

    I suggest you try to get the best surgeon you can. Do all the research you can. This is a very tough decision. It was for us as well. If you want to talk to my son or us please let us know. (He is still in remission, now 27,and doing fine.)
    You can read more about him at Will Power Research Fund. BTW--we were very happy with UCSF.

    Arleen

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    Senior User plugh's Avatar
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    I was having mild seizures (mainly while exercising and playing soccer) but didn't recognize them as such - mild/simple. MRI showed a mass. I went to MSK in NYC and had surgery. I think minimally you may be looking at a biopsy and I think the standard for low grade gliomas is to resect as much as possible since you are doing a biopsy anyway. In some cases I've heard just watch and wait, no surgery so you need to work with your medical team to explore all possibilities and get as informed as possible. Plenty of really helpful people on this forum. I will tell you that post my craniotomy I went back to playing soccer about 1-2 months later and have not experienced any post surgery defects that I'm aware of (though my team mates have suggested my shooting is now far more accurate ). Scar tissue I have been told can induce seizures too so for me anti seizure medication is for life though I am on a very low dose per day. Haven't had a seizure since 1 month pre surgery. I think the seizures are really caused more by the pressure on the brain from the (in my case) tumor and could now be caused by pressure from scarring. I think MRI reports are written to make sure they cover every possible base so again work with your medical team to get more specific. Good luck.
    Last edited by plugh; 04-09-2011 at 11:14 PM.
    Tumor right temporal/frontal lobes. Craniotomy Aug 2007 diagnosed as Gr II Oligodendroglioma

    I started a Blog

    http://brain-cancer-survivor.com/

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    Administrator Top User brainman's Avatar
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    Hi synaptonaut. I am very sorry about your possible low-grade glioma. I say "possible" because until they do the biopsy, there is no way for them to really know.

    Quote Originally Posted by synaptonaut View Post
    Four or five doctors have looked at the MRI with contrast results and the general consensus seems to be a low-grade glioma. One is a neurosurgeon/neurooncologist at UCSF and his recommendation was surprisingly not to just have a biopsy, but to surgically enter the area of the lesion and take multiple samples of the suspected area and then remove the dangerous stuff accordingly.
    That does sometimes happen. It kind of depends on size and location. It the tumor is in a "good" location and is relatively small, it is possible to remove the whole thing as the biopsy sample.

    I have not yet had a PET scan and I'm not very well informed of what alternatives I may have available. I know there are some people here with a great deal more experience and knowledge of these things than I, so what I'm really looking to ask here is: what would you do? What questions should I be asking my doctors before moving forward with the surgery? Should I push to have a PET scan done and a biopsy first?
    A PET Scan is rarely helpful when dealing with a primary brain cancer since they do not tend to spread. PET Scans are mostly used to check for cancers that tend to occur in more than one place. For the brain, the MRI should do that better than a PET Scan.

    Also, I'm a very active person (cyclist, runner, etc) and I've heard cases of scar tissue causing seizures after a similar operation. Is this a common after-effect? How about weakness on one side?
    My first indication that something was wrong were seizures. Any "damage" to the brain can potentially cause seizures. This does include damage from the biopsy. But there are medicines to control them. As for the level of activity you will be able to sustain, that is a hard question that very much depends on what the biopsy shows. Most people with low-grade gliomas can return to a normal level of activity but it might take a while depending on the treatment plan. Chemo, radiation, or surgery can but you down for a while... several worths is some cases.

    Good luck. You are in my thoughts and prayers.
    Jim
    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

  5. #5
    Newbie New User synaptonaut's Avatar
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    Quote Originally Posted by artaran View Post
    I'm very sorry to hear about your health concerns. My son was 23 when he had an MRI that suggested a low grade glioma. We went to UCSF and had it removed by Dr. McDermott. The biopsy revealed that it was actually a grade 3 astrocytoma, so we are glad we went forward with surgery. His tumor was large in the frontal and parietal lobes on his right side. He had temporary weakness but it lasted only a short time. He ran the Big Sur Marathon 3 months after his surgery and trained while on Chemo and radiation. Depending on the location of the tumor and your health and youth, you can come out of treatment still strong and healthy.

    I suggest you try to get the best surgeon you can. Do all the research you can. This is a very tough decision. It was for us as well. If you want to talk to my son or us please let us know. (He is still in remission, now 27,and doing fine.)
    You can read more about him at Will Power Research Fund. BTW--we were very happy with UCSF.

    Arleen
    Thank you Arleen for the helpful information! I read up on your son's story at the Will Power Research Fund site. I am glad to hear that he is doing well!

    I would very much like to talk to your son about his experiences, but only if it isn't a bother to him or yourself.

    Thanks again,

    Justin

  6. #6
    Newbie New User synaptonaut's Avatar
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    Quote Originally Posted by plugh View Post
    I was having mild seizures (mainly while exercising and playing soccer) but didn't recognize them as such - mild/simple. MRI showed a mass. I went to MSK in NYC and had surgery. I think minimally you may be looking at a biopsy and I think the standard for low grade gliomas is to resect as much as possible since you are doing a biopsy anyway. In some cases I've heard just watch and wait, no surgery so you need to work with your medical team to explore all possibilities and get as informed as possible. Plenty of really helpful people on this forum. I will tell you that post my craniotomy I went back to playing soccer about 1-2 months later and have not experienced any post surgery defects that I'm aware of (though my team mates have suggested my shooting is now far more accurate ). Scar tissue I have been told can induce seizures too so for me anti seizure medication is for life though I am on a very low dose per day. Haven't had a seizure since 1 month pre surgery. I think the seizures are really caused more by the pressure on the brain from the (in my case) tumor and could now be caused by pressure from scarring. I think MRI reports are written to make sure they cover every possible base so again work with your medical team to get more specific. Good luck.
    Thanks for the reply plugh! Glad to hear you have recovered so well! Have you had any more seizures post-op?

    Out of curiosity, what seizure medication do you use? My doctors have me taking Dilantin (Phenytoin) and I hate the stuff.

  7. #7
    Newbie New User synaptonaut's Avatar
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    Quote Originally Posted by brainman View Post
    Hi synaptonaut. I am very sorry about your possible low-grade glioma. I say "possible" because until they do the biopsy, there is no way for them to really know.



    That does sometimes happen. It kind of depends on size and location. It the tumor is in a "good" location and is relatively small, it is possible to remove the whole thing as the biopsy sample.



    A PET Scan is rarely helpful when dealing with a primary brain cancer since they do not tend to spread. PET Scans are mostly used to check for cancers that tend to occur in more than one place. For the brain, the MRI should do that better than a PET Scan.



    My first indication that something was wrong were seizures. Any "damage" to the brain can potentially cause seizures. This does include damage from the biopsy. But there are medicines to control them. As for the level of activity you will be able to sustain, that is a hard question that very much depends on what the biopsy shows. Most people with low-grade gliomas can return to a normal level of activity but it might take a while depending on the treatment plan. Chemo, radiation, or surgery can but you down for a while... several worths is some cases.

    Good luck. You are in my thoughts and prayers.
    I understand the efficacy of a PET scan in comparison to an MRI a little better now.

    Thanks for all the information Jim!

  8. #8
    Senior User plugh's Avatar
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    Quote Originally Posted by synaptonaut View Post
    Thanks for the reply plugh! Glad to hear you have recovered so well! Have you had any more seizures post-op?

    Out of curiosity, what seizure medication do you use? My doctors have me taking Dilantin (Phenytoin) and I hate the stuff.
    My last seizure was, ironically, a month before my surgery so no seizures at all. I'm on Keppra now but a very small dosage - 250mg twice a day. Didn't like it at first when I was on double that dosage - seemed to keep me awake at nights and felt some irritability (more than normal ). I asked to have the dose reduced. I have considered stopping altogether but don't want to risk having a seizure due to the impact on driving and risks of driving and havng one happen then. Since I tolerate the Keppra ok now I just have left well enough alone.
    Tumor right temporal/frontal lobes. Craniotomy Aug 2007 diagnosed as Gr II Oligodendroglioma

    I started a Blog

    http://brain-cancer-survivor.com/

  9. #9
    Newbie New User synaptonaut's Avatar
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    Quote Originally Posted by plugh View Post
    My last seizure was, ironically, a month before my surgery so no seizures at all. I'm on Keppra now but a very small dosage - 250mg twice a day. Didn't like it at first when I was on double that dosage - seemed to keep me awake at nights and felt some irritability (more than normal ). I asked to have the dose reduced. I have considered stopping altogether but don't want to risk having a seizure due to the impact on driving and risks of driving and havng one happen then. Since I tolerate the Keppra ok now I just have left well enough alone.
    That's very responsible of you to continue on taking the medication as you are. I might sooner give up driving than continue with this stuff forever. I'll ask my neurologist about changing medications though--perhaps some have fewer or less severe side-effects? I feel like I'm hungover every morning when I get up.

  10. #10
    Administrator Top User brainman's Avatar
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    Justin, I do not drive much either due to the danger of having a seizure. I think most states do have restrictions. In Tennessee, it is 6 months seizure free. I have only made it that far a few times... mostly before my 2005 recurrence. Currently, I am not supposed to drive. I do anyhow but just to the grocery store and things like that. It is a pain to have to ask for rides. I have no family within 2.5 hours of me so I have to depend to my few friends but I make it OK.

    I have been on seizure meds since 1992. My doctor has changed them from time to time. I have been on Lamotrigine for several years now. It works well but I do have to take it every single day. I am apt to have a seizure if I skip it for even one day! For me, meds are just another part of my life. I have been on Keppra, Phenobarbital, and one other that I cannot remember now. The Keppra and Phenobarbital combination worked for several years. At first, they did make me sleepy but I adjusted to them. Stay on Keppra at least for a few months and see if the side-effects go away or at least diminish significantly.
    Jim
    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

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    Newbie New User synaptonaut's Avatar
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    I thought I should post an update since it's been nearly two months since my surgery. I also wanted to say thanks to everyone who responded to this thread!

    So I had the lesion, which turned out to be a grade II oligodendroglioma, resected at UCSF on 4/25/11. The surgery took about six hours and I was knocked out the entire time. I awoke groggy and feeling like my head had been removed and patched back on. I didn't experience any severe pain to speak of. Everything just felt foreign and strange up there. I stayed in the ICU for one day and was then transferred to a regular room for another ~30 hours until I was feeling pretty good, walking around a little, and was then discharged. After recovering at home for a few days I started to do a little more. I went on some walks and mostly did a lot of reading.

    Two weeks after the surgery I went back in to have the 80 or so surgical staples removed from the incision line. I hated the staples and was relieved to get them out; nobody told me how they would itch like crazy for half of the time I had them in. At that point I was feeling much more like myself and started to get back into my regular activities. I started riding my bike again and doing a little bit of running. Shortly after that I started picking up a few hours at work. Now, about 7 weeks post surgery, and with the weather much nicer here in northern CA, I'm feeling great. I'm in better shape than I was before the seizure and ride my bike or run several times a week.

    At this point I just need to get some follow-up MRI's to keep an eye on things. I had considered doing chemo as a preemptive attack on any remaining cancer cells, but my oncologist said it wouldn't guarantee that more tumors might still emerge, so I opted not to go through chemo at this time.

  12. #12
    Administrator Top User brainman's Avatar
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    Justin, I am glad that surgery turned out so well . I understand why the oncologist is recommending to hold of chemo for now. 1. Low grade gliomas do not tend to respond to chemo therapy and 2. Chemo can be hard on a person. Keep that "gun" in its holster for later... if needed

    Anyhow, good to hear from you.
    Jim
    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

 
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