So many questions. Not enough answers!

skye · New User Joined: 11 Dec 2007 Posts: 3 Location: NC

My husband had 8 gm seizures on Nov 12, 2007. After being rushed to the ER, we found out he has a massive brain tumor. 8cm x 6cm. He had a left frontal crani on Nover 17. The surgeon got enough for a biopsy, but could not resect - couldn't remove a darn thing! I appreciate that our surgeon didn't take the chance - we would have been devestated if he had any major defecits after surgery.
He also has a smaller tumor on the left temporal lobe, which was not biopsied.

After initial pathology reports, we were told grade III astrocytoma, with oligo mixed in for good measure, I suppose. They sent the tissue to Johns Hopkins. We met with the medical oncologist last week, and will meet with the radiation oncologist this week.

Well, we get those results back today from JH. Not astrocytoma at all - which is good news, I suppose. Grade II Ogliodendroglioma. Hm. How can two pathologists get two different findings?
I'm thankful, I think....because I *think* we have a better chance of this tumor responding to treatment. However, I know these chances diminish if the tumor cannot be removed.
No one has given us a timeline - espeically since we just got the new diagnosis today.

I was told that the small temporal tumor was most likely astrocytoma, but this was before Johns Hopkins sent over the new report. So now what? Is it possible that JH report was wrong? From what I've read, astros are the tumors that typically spread to other lobes like that - not oligos. I just don't understand it. And it seems like I'm just not getting the answesr I need.

I just don't know what to think. We have 2 small children. My husband is 29 years old.
Am I being a pessimist to think that this tumor is going to take him away from us, regardless of it's type and grade? Or am I being a realist?

I have been researching online, but I have found so much conflicting information.

I don't know what I need right now. Reassurance I guess - form someone who has been there. I feel like I'm walking a haze, helping my husband fight a losing battle.

I'm sure we'll be getting another opinion soon, just from the MRI/CT images. What do you think? HELP!

brainman

Hi skye, I am very sorry about your husbands glioma. I was diagnosed in 1992 with a grade II astrocytoma. When it recurred in 2005, it was diagnosed as an oligodendroglioma grade III. My original one and even the recurrent on was much smaller. The original was about the size of a quarter. The recurrence was 2 cm wide, 5 cm long, 2cm deep. They opted for no surgery the first time but did surgery in 2005.

When I was first diagnosed, the doctors told me that I had a very small chance of living more that 10 years even with treatment. However, here a am, at least 5 years beyond 10 Smile

. The prognosis now is much better for a grade II glioma.

What they need to check is for a particular genetic mutation called the 1p/19q gene deletion. If your husband has that deletion, he has a better chance of responding to chemotherapy. Fortunately, I do have that mutation.

It really does not matter whether it is an astrocytoma or a oligodendroglioma. A glioma is a glioma is a glioma. In fact, at one time the names where used to describe different grades of gliomas... Grades I and II were called astrocytomas, Grade III's were called Oligodendrogliomas, Grade IV were called GBM's (glioblastoma multiforma). Your husband has a "mixed type" but should be treated to the most aggressive type... even if those cells are in the minority. In other words, his medical team should be treating him as if the cancer is a Grade III.

John Hopkins is a wonderful medical center. It does sound like they are taking as aggressive steps as they can without risking damaging further your husband's brain.

You can read all about my experience by going to the links in my signature block.

You and your husband are in my thoughts and prayers.
_________________
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/

Mama 2 2

Hello Skye - I'd like to say 'welcome', but it's not really the kind of place you want to have to come to . . . though I will say that you have found a great place for support, and even just to vent.

I wish more than anything I could provide you with some sort of answers to your questions, but I am in a similar boat in that it is a great challenge to find any answers as each person's situation will vary greatly, and even the doctors/oncologists don't seem to always know (as you are finding out).

What I can do is relate to you and understand where you are coming from - my husband also has a grade II oligo, he's 31 (diagnosed at 25), and we also have two small children (2 3/4yrs and 2 1/2 mos). To hopefully give you some hope, my husband was originally diagnosed almost 6yrs ago (though I believe we were intially mislead on the diagnosis as well).

You can read more of the details on our situation under my initial post: http://www.cancerforums.net/about7982.html - I'm a relative 'newbie' here too and was glad to find this site where there are people who can relate. Brainman's 15 years and going is a great source of hope for me . . . I have found others who have survived 13 years and have graduated to 9 months between scans which you will likely learn is a pretty big deal around here. Very Happy

. The internet can be a scary place and I have spent countless hours trying to find answers, but have found the most help in forums like this just talking with people who understand.

As brainman stated, the chromosome deletions will have a factor in survival time as it affects responsiveness to chemo - my husband unfortunately does not have the deletions and we have our next scan on Jan 2nd to see how the chemo is working. He just started on it in Oct - he had a gm seizure when I was 3 days overdue with our second baby - which is how we found out that the tumour had returned once again (he has had surgery to remove it twice as we were fortunate enough that it was easily operable on his right frontal lobe). We are crossing our fingers for the chemo to work though, as the radiation did not hold the regrowth off for very long. A good thing about the chemo - if they put him on temozolomide (or I think it may be called temodar in the states?) it seems to have minimal side effects for most people (it mainly made my husband really tired by the end of the 5 days - but his anti-seizure drugs make him tired too), yet it's supposed to be rather effective - he takes it for 5 days then is off for 23 days, and it's an oral medication so you don't have to go to the hosptial for an IV or anything (we didn't know there were other types of chemo before this all started . . . ).

That's not to say that we aren't contemplating the potential downside to the situation and trying (as much as possible) to be prepared for what may be - but the only thing you can do is live each day, take as much value as you can out of it, and plan on having as many of those days as possible. Emotionally, we certainly have our good days and bad - and I think you need to have the bad and let them be bad without feeling guilty about it. There is no question about it - the situation sucks - I think acknowledging that helps you appreciate the positive things more. It's also important not to dwell too much on the bad as it can overwhelm you. I know what you mean by being in a haze, where it seems impossible to stop thinking about it for even a second. Trying not to breakdown infront of the kids, or when a certain song comes on the radio, or when people ask about things you plan on for your future . . . sometimes you feel like telling everyone and sometimes you feel like you wish no one knew - it's a mess of emotions, and I feel strongly for you and your family.

You husband has positives in the fact that he is young, and I understand it's a positive to present with seizure rather than some type of neurological deficit. I don't know what size my husband's was, about the size of a golfball I think, so not nearly as large as your husband's, but that's not to say his won't be knocked down by chemo or radiation. I hope that you can find a medical team you feel comfortable with - that is crucial. I quite liked our radiation oncologist, but am not a 'big fan' of our neuro-onc. He doesn't seem to want to share much info with us.

I really hope you will find more of the answers you are looking for, along with the support you will need. You and your family will be in my thoughts. Well, I've blabbered on - I tend to do that once my little ones are finally asleep Very Happy

.

Take care!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

skye · New User Joined: 11 Dec 2007 Posts: 3 Location: NC

thanks for your replies - i really do appreciate them.

my husband is doing well. he made it back to work last week (thursday) for the first time since mid-november. he didn't go back the next day though b/c he had a seizure in the wee hours of friday morning. we went to the er -- CT scan shows no new growth.
but we're having an MRI tomorrow.

we do now know that he has the deletion of 1&19----which is good news. we have temodar, but won't be tkaing it until we decide to do a clinical study.

we are also talking to dr. friedman at duke about a trial study. and 3 other doctors at wake forest univ. hospital. we'll see....

hope you all had a nice holiday. best wishes for health & happiness in the new year! i'll be back to check in with you when i get a moment!

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