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Thread: looks like it's low-grade glioma

  1. #1
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    looks like it's low-grade glioma

    I posted a few weeks ago about a possible low-grade glioma (in the right frontal lobe, measuring roughly 1.5 x 2.5 cm). After my first scan in August, a local neurosurgeon told us it was probably glioma, but that it was no big deal and not to worry about it. He ordered another scan in December. The mass is still there, but this time he said it was very unlikely to be a tumor, that he had no idea what it was but maybe I'd bumped my head as a child. We asked around through a neuropsychologist friend and got the name of a neurosurgeon at the Nebraska Medical Center in Omaha who recently completed a neurosurgical oncology fellowship at MD Anderson. Last week we saw her for a second opinion.

    She was excellent – very focused and informative, and also very human. Unfortunately, she feels strongly that this is a neoplasia of some sort; low-grade astrocytoma is number 1 in her differential diagnosis. According to her, the MRI evidence is totally inconsistent with old head injury and she has no idea why anyone would tell us that. She feels that the lesion may have grown a few millimeters during the four months between scan, but it's hard to say since different machines were used for the two scans.

    The tumor is very accessible to resection and not too close to the eloquent areas. She doesn't want to do a biopsy; her opinion is that for a resectable tumor like this (which begins right under the dura) you just do the craniotomy and take it out. Then you can send off the whole thing for pathology and get a better representation. Why do two brain surgeries?

    We were given the choice to 1) do the surgery now, or 2) watch and wait till the tumor grows or changes. We've chosen to rescan in June. If there's growth at that time, we'll discuss whether to schedule the surgery then or rescan at a 3 mo interval. She doesn't recommend just leaving it alone, I think because it's so resectable and because of the risk of progression.

    Although we have a lot of confidence in her, I am pursuing a free scan review just to be sure we're on the right track. I have an old friend whose husband is a neuroradiology fellow at Stanford, and he is looking into the scan review process for me. We also struggle a bit about whether we're ok with this surgeon in our home state or need to look elsewhere. It would be really hard to travel for treatment, since we have two small children (our son is almost 2; daughter is 4 1/2). This doctor was specifically hired to build a brain tumor program in Omaha; but that program is still maturing. They do have a full neurosurg, neurooncology, radiation oncology, and neuropsych team. And the tumor apparently will not be very challenging to resect.

    Right now I spend a fair amount of time quietly freaking out. Is this really happening? Are we doing the right thing by waiting? What if it's actually grade III - is it better to know that now? What's it like to have a craniotomy? My husband and I are trying to sort out how to communicate with each other, since he is currently in a state of semi-denial and wants me to just ‘think positively'. I know it's great news that the tumor is small, resectable, and was caught early .... I should mostly just be grateful ....but I can't help grieving for the nice boring predictable life I had a week ago.
    Amy (39)
    *low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 200
    *gross total resection July 2008 at Mayo Clinic
    http://cancerforums.net/viewtopic.php?p=28526

  2. #2
    Administrator Top User brainman's Avatar
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    Amy, I am very sorry about your health concerns. If you read my story (links in my signature block) you will see that I have a lot of experience with gliomas. In addition to my own battle with my glioma, my mother died of a GBM IV in 1998... six years after my own diagnosis.

    I totally agree with your neurosurgeon (for whatever that is worth). My own choice would be to have it removed as soon as possible. There is no way for anyone to be sure what it is without a biopsy (a resection is just a "total biopsy" ). When I was first diagnosed, I signed all the necessary paperwork for my neurosurgeon to totally remove all the cancer necessary in order to have clear margins. However, when he actually got in there, he realized that he would possibly cause a lot of damage to an otherwise healthy man, so he only did a biopsy and recommended chemotherapy. I was fortunate to have the 1p/19q gene deletion (although he and I did not know that it the time), so I responded very well to chemotherapy. Chemo was not easy by any means, but here I am, a 15 year survivor. It did recur in 2005 and at a higher grade so they did take out all that they could followed by stereotactic radiation therapy.

    So, my suggestion is to:
    Go with surgery now (allowing the doctor to make her own decision about how much to remove once she actually sees the cancer)
    Ask for a genetics test to see if you have the 1p/19q gene deletions.
    Ask about the appropriateness of radiation therapy. Most likely they will not recommend this until they check to see what stage it is.

    I am talking as if what you have is a glioma... it could be something else. I would not worry too much about it being a Grade III since the change from August would be more obvious since a Grade III really does grow faster than a Grade II. A Grade I is considered to be benign and to grow very slowly... a lot of us were born with a Grade I that then mutated into a Grade II or III.

    You are definitely 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

  3. #3
    Senior User plugh's Avatar
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    Amy, very sorry to hear about your situation and I hope everything turns out well for you. I had a very simialr Grade II Oligodendroglioma removed on Aug 2, 2007. I'm sure every one has different experiences of this but my surgery was on Thursday morning and I went home on Sunday morning (lots of staples but the scar is almost invisible now depsite my totally bald head . Staples came out a couple of weeks later and I was able to start moderate running quite soon after. I was told to do as much walking as possible right after surgey. I'm now back playing soccer and cleared to head the ball again! I think Brainman has laid out the best steps for you. Find the best surgeon you can if you arrive at the point of getting this taken care of. You might want to be prepared too for them waking you during surgery - they did for me and it's quite bizarre. You're awake but sedated and subjected to questions and simple hand manipulations - that gives the surgeon a much better ability to remove as much as possible without impacting you. Also I was put on anti seizure medication before surgery (my symptoms were simple partial seizures) but I think they need you on the meds to prevent anything arising in this regard during and post surgery. I am now on 3 monthly MRIs and a watch and wait protocol - no chemo or radiation yet. Very best of luck.

  4. #4
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    I'm going through something very similar. My "glioma" can't be biopsied. I know how the worry and questioning of your situation can be. Hang in there. I've driven myself nuts a few times just wondering the big "what if's" My advice is not to let that get to you too horribly bad. Worrying like that isn't good for anyone. I hope any new news you get is good.

    Noid

  5. #5
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    Hi Amy,

    I'm sorry to hear of your situation, but it's good to know that you have more answers now than previously, and seem to be getting better care. My husband has a grade 2 glioma and as Plugh said, much of brainman's advice is sound. My husband has had 2 surgeries, both were 99% resections - but the bugger just keeps coming back - though we have just passed 6yrs since diagnosis. We found it because of a seizure, and after the first surgery it was clear MRI's for over 3 1/2yrs, then the second surgery they followed up with radiation because his tumour doesn't have the 1p/19q deletion, but there was slight growth showing again just this past october (just under 2 yrs after 2nd surgery - he had another seizure). He is now on chemo - temozolomide/temodar (same thing) - but the side effects are not bad for him.

    With each surgery he was in and out of the hospital in just a few days, and he was off work for about 5 weeks each time I think. They didn't end up shaving his whole head, just along the incision - a big, sideways 'L'.

    I completely understand about how it turns your life around though. . . . we also have two small children (one is almost 3yrs and the other just 4 months - born 2 days before finding out his tumour returned - though since he had just had a seizure we were pretty sure it had returned just before she was born). Every day thoughts about him no longer being with us pop into my head and it's awful. I get completely stressed out before his MRI's, but we were so lucky the last one showed that the chemo is working and the tumour has shrunk completely.

    I have said to many others in the past that it's pretty impossible not to have bad days, and I think you need those in order to more greatly appreciate the good ones, just so long as it doesn't overwhelm you. We both have shed many tears over it, but we've also been able to laugh about it. I think it's extremely important to communicate with your husband though - it's hard sometimes because you don't want the other to worry about you or be more scared. I think our love has grown as we have a deeper appreciation for eachother, for life, for everything. I still freak out much more than I tell him, and I'm sure he does the same, but that's why it's great to come here too! It often feels like the rest of the world doesn't understand and has no idea what you're going through, but you will find here there are many people who know, and understand, and care. Your husband should join in the forum too, if he's up for it. My husband doesn't like it much because he can be a bit of an Eeyore and tends to focus too much on the more difficult stories - whereas I can see the good in them too and take comfort in the understanding.

    I wish you the best - and you and your family will be in my thoughts.

    Cheers!
    ~C~

  6. #6
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    Thanks to everyone for sharing your thoughts and experiences. It means so much and makes me feel much less "alone" in this.

    Last week I contacted an old friend whose husband is a neuroradiology fellow at Stanford, to ask him about their free scan review process. He took my scans to the head of Stanford's brain tumor board. They concur with my new neurosurgeon (was good to confirm that, since we'd gotten two VERY different opinions). They are recommending surgery sooner rather than later. That hit my husband hard; he was holding onto hope that this was a big fuss over nothing.

    This prompted me to call my neurosurgeon and ask a few more questions. She took my call directly (geez, not even the pediatrician does that!) and spoke with me at length. My main question was whether waiting (and allowing a few more millimeters of growth) would affect her ability to resect with the generous margin she wants. She says no, at this point it could nearly double in size without affecting resectability. We discussed doing surgery right away. She would prefer not to, although she'd do it if I want. Her opinion is that since it isn't causing symptoms and we don't have hard evidence of growth, it's not worth the small but real risks of surgery. However, as soon as we see any change in appearance by MRI she will strongly advocate immediate surgery.

    I am comfortable with this for now. Originally we'd planned to rescan in June, but she suggested we bump that up to April (that's a 4-mo interval). Honestly, I expect we'll see growth then. Both the neurosurg. and the neurorad. suspect the area grew 1-2 mm last time, but it's difficult to say since difference MRI machines were used for the two scans.

    I also asked her about the surgery, head-shaving etc. Although she won't plan out the exact incision type/location till it's time for surgery, she emphasized that she's very aware of the importance of personal appearance and makes every effort to minimize the impact. I also got to hear her philosophy about how neuro-oncologists are driven by the well-being of the whole person and not just the lesion to be excised.

    This conversation, combined with prayer, is helping me to put things in perspective and freak out less. In the next couple of months, I just need to concentrate on getting financial/legal things in order, enjoying my family, exercising more, and celebrating my son's 2nd birthday. Then I'll be ready to tackle the surgery
    Amy (39)
    *low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 200
    *gross total resection July 2008 at Mayo Clinic
    http://cancerforums.net/viewtopic.php?p=28526

  7. #7
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    Re: looks like it's low-grade glioma

    Hello Amy
    I'm so happy & relieved to read your story & I'm sure it will help & inspire many on this forum.
    Thank goodness you found an excellent Dr after being given the "brush off" with yr first Dr. Your new neuro appears to be very approachable & BRIGHT. I can imagine your surprise at the Dr being available to talk to you over the phone! How good is that!
    I can sympathise with you regarding your Husband's reluctance to accept your diagnogis & am happy he has finally started to react appropriately...as long as he doesn't "go to pieces", he needs to be your "rock & strength" during this time. I think it's a "boy thing" as my Husband was similarly "non-reactive" to my health scare a couple of years ago, although I must say he was pretty amazing with holding our boys & the house together during my long hospital stay!
    It would be very comforting for you to have your diagnosis agreed upon by the specialists @ Stanford too!
    It seems to me that the tumour is in an excellent position for resecting & this is a huge bonus for you.
    I will continue to keep you & your family in my Prayers & Thoughts.
    I pray you continue to stay strong, positive & focused & most of all I pray you & your Husband are able to dicuss all issues surrounding you with your illness.
    Cheers, Aussie Angie.
    Brother diagnosed with GBMIV Feb 07
    Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
    Went to our Heavenly Father after a 19mth battle,, 47 years young.
    23 Sep 2008
    http://cancerforums.net/viewtopic.php?p=19227

    "Without Faith We Have Nothing"

  8. #8
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    Hello everyone,
    Sorry to have been out of touch for so long. The last few months have been a struggle, and I haven't had the emotional energy to post about it. After our latest scan in May, we began to wonder whether our neurosurgeon in Nebraska was right about delaying surgery, and sought several other opinions. I sent scans to Allan Friedman at Duke and Fred Lang at MD Anderson, and spoke with both on the phone. Both surgeons felt that because this tumor so easily accessible for surgery, it would be best to remove it rather than continuing to watch and wait. They feel that early, aggressive resection will give me the best prognosis.

    We seriously considered Duke and Dr. Friedman agreed to perform my surgery, but we ended up going to Mayo Clinic in Minnesota because it's much closer to home and logistically easier. Earlier this week we consulted with a neurooncologist and neurosurgeon at Mayo, and the surgery is scheduled for next Wednesday, July 9. Dr. Meyer will be using frameless stereotactic navigation, and expects a pretty small incision, straightforward surgery, and pretty easy recovery. They don't expect I'll need chemo or radiation right now, although of course we won't know anything for sure until the pathology results come back.

    I am glad to finally be doing something proactive about this tumor, after a year of watching and waiting. We're so fortunate that it's such a surgically accessible spot - the neuroonc. called it a "dream location". That makes the decision to operate a lot easier, because the risk is very low.

    I'll be in touch after we get home from Minnesota, to let you know how things went. All of you here have been a great help and comfort to me, and I just want to say thanks. If you're interested, we will be using a CaringBridge site to keep family and friends up to date. Please stop by there if you'd like. The address is http://www.caringbridge.org/visit/amygeschwender

    Take care,
    Amy
    Amy (39)
    *low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 200
    *gross total resection July 2008 at Mayo Clinic
    http://cancerforums.net/viewtopic.php?p=28526

  9. #9
    wow aimster, i have almost the exact same situation as well. I'm glad you're taking an early, proactive approach to this. I wish the same could be said with me, except that 1) i'm not an aggressive person and i don't like to assert myself against the doctor's wishes cause i'm shy 2) I don't have the money to pay for surgery, and when I brought this up with the neurosurgeon, he strongly advised against it.

    I have what i think is a low-grade astrocytoma in my posterior superior temporal gyrus, measuring 2cm by 2cm in my right temporal lobe. It's low grade, and I was diagnosed with the tumor 2 years ago at 20 years of age, and it has barely changed its measurements since then, i've gotten 6 month interval MRIs. I am wondering whether I should remove it early or what not, I have no idea whether its going to continue growing. They say that it's congenital-i have no idea how one would know whether it is or not. and i showed no symptoms of a brain tumor until i got my first seizure at 20. anyway, i have no idea what i should do. I was a bit in denial when i first got diagnosed, i wasn't all that worried, but now that i have time on my hands, i'm going to do as much research as possible and figure out the best way to approach this problem.

    I'm someone who really likes to "nip things in the bud" too, but there are a lot of barriers for me at the moment. including money, and not knowing the full risks of surgery yet.

  10. #10
    Administrator Top User brainman's Avatar
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    Amy, I am truly sorry that I have not replied sooner than this. I did read on your website that your surgery went well and that you are recovering nicely.

    You continue to be 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

  11. #11
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    Re: looks like it's low-grade glioma

    I am also in Nebraska.......The neuro surgeon, I have is in Lincoln......as far as I am concerned he is the best Nebraska has to offer....Dr. Christopher Kent.

    (link removed by Administration)

  12. #12
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    Hi Christy,
    I am so sorry to hear of your struggles, but it sounds like you are holding up well! What a small world to find someone who also lives in Lincoln! I've heard of Chris Kent (he did surgery for a coworker's wife with a meningioma). I've heard good things about him, and also about Dr. Tomes.

    Unfortunately my experience with Dr. Kent's partner in Lincoln was SOOOOO bad that I just cannot consider going back to that practice. He was awful, said some terrible things (when I asked questions and wanted some help with the uncertainty, he actually told me, "I know the uncertainty is hard - it's really easier for me when I can tell my patients they are going to die, because then they go home and deal with it".) And we were so thrilled with our surgeon at Mayo, Dr. Fred Meyer. If you every need a surgery that the folks in Lincoln say is not possible, you should consider contacting Dr. Meyer. He is nationally known and can do some amazing things; plus our neuro-oncologist at Mayo just wonderful too, and is willing to work with us by phone/mail to limit the number of trips we need to make to Mayo! Please just let me know if you ever need the contact info for the Mayo folks!
    Amy (39)
    *low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 200
    *gross total resection July 2008 at Mayo Clinic
    http://cancerforums.net/viewtopic.php?p=28526

  13. #13
    Hi Amy... It's Amy. I saw this earlier and thought it was you but wasn't sure. Glad to see you on here. I just joined yesterday and have been browsing. Not sure I've seen anything major yet but give me time. Guess I need to get some things done around here. I'm glad you turned me on to it.

    How are you doing?

 
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