New member-oligoastrocytoma grade 2

anjiep · New User Joined: 15 Jun 2008 Posts: 2

Hello! My name is Anjie. Quick intro- I am a 29 year old nurse. I am 27 weeks pregnant, have a 9 y/o son, 6 y/o daughter and supportive husband.
I had no symptoms or indications that anything was wrong until May 30th (daughters 6th birthday). I was feeling a little run down and have having episodes that I considered "spacing out" for about a minute at a time. During these "episodes" I was completely aware of what was going on around me. I was up and walking around, just felt "a little strange."
I thought maybe I was anemic or something. Now I feel silly...
The next day I didn't feel any better and the "episodes" became more frequent. I could feel my eyes and cheeks flutter. My family became concerned.I went to the ER and they ordered an MRI.
They found a "baseball" size tumor and diagnosed my "episodes" as seizures. I feel like I sould have know something was wrong, but I was clueless!I was taken to a specialty hospital 2 hours from home, due to my pregnancy. Tumor was removed. Surgery went "well".
I am taking Keppra and dilantin. I have an appt with a neuro-oncologist on friday. I have so many questions.
The pathology stated that I had an oligoastrocytoma grade 2. This was removed from my right frontal lobe. FISH studies for "possible LOH 1p 19q and PTEN loss" are pending.
Has anyone had something similar? Would this be considered cancer? I understand everyones situations are different, but if they did removed the entire mass, would I still possibly ondergo further therapy? Any info would be great. I feel my life has been turned upside down....Thanks for reading this ramble

ksplat

Hello Anjie

Fristly, I would like to say I am sorry for your current health problems, you are in my thoughts & prayers.

I am not familiar with the type of tumour you mentioned so am unable to answer your questions. I am certain you will receive replies soon from other members. We are a great community of support, comfort & sharing personal experiences with others here.

You must be finding it very hard to be processing everything that you have been experiencing! I have heard that brain tumours can be growing unnoticed & without symptoms which makes the whole issue even harder to come to terms with!

Cheers, Angie.
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Mama 2 2

Hello Anjie,

First off, I am so sorry to hear of your situation - my heart truly goes out to you and your family. As Angie (our 'Aussie Angie') mentioned, this is a great place for support and information.

My husband has the same tumour as yours. We are currently just over 6yrs into this crazy journey - You can read our full story by clicking the link in my signature block, but a breif rundown is this:

~Diagnosed after a grand mal seizure at age 25 (and another gms right after diagnosis).
~Had surgery and were told it was 'all' removed.
~MRI's every 6 months, fine for 3 1/2 yrs, then tumour returned
~2nd surgery, followed with radiation, still 6 month MRI's
~Just over 1 yr after radiation, tumour returned again (another seizure)
~No surgery this time, on chemo (temozolomide, aka temodar in the US) and scans now every 3 mos.
~After 3 mos scan was 'clear' (lucky, since his doesn't have the 1p/19q deletion which makes it more responsive to chemo), and after 3 more mos still clear so they took him off chemo for a while
~MRI tomorrow (it's been 3 mos since going off chemo) and we'll see!

There's certainly no reason to feel silly about not realizing what was wrong - I know when my husband had his seizure, brain tumour was the farthest thing from my mind. My husband also takes dilantin for seizures -it seems to work well for him, but I know some people need to work to find the right doseage/prescription to help. If your tumour does have the 1p/19q deletion this will be a good thing as it means your tumour will be more responsive to chemotherapy. This is why they gave my hubby radiation first, as they felt that would be more effective. Fortunately for us though, the chemo has worked thus far.

As to if this is considered cancer . . . it depends on who you ask I suppose. We were never told this was cancer initially. We were told it was a 'benign tumour', and I always thought benign meant 'non-cancerous'. When he started on the chemo and our neuro-onc kept calling it cancer, we asked him why and he stated that any growing tumour is cancer, and whether it's 'benign' or 'malignant' relates to the speed at which it grows. Personally, we never really refer to it as cancer. The 'c' word seems to have so much power and I don't want to let it cast such a shadow on our lives. We don't downplay his condition - we fully understand the severity of the situation (and have shed countless tears) but we also try to stay as positive as possible and not let it get us down - but as you may find the days leading up to scans are usually the toughest as anyone around me today could probably attest.

Keeping a perspective on what's really important in life (and you have a few things to help you with that it sounds like!) really makes it all easier. We were quite ignorant initially of his prognosis, we decided (and were told) to stay off the computer and we listened blindly to our surgeon (who told us it would probably never come back because he 'got it all') and we unfortunatley didn't really get the full picture (apparently it's impossible to completely remove them) - but maybe that's why it also was easier to live with . . . who knows. But now, 6yrs and two children (3yr old girl and 8mos old girl) later, we still live an incredibly happy life. It's certainly not something we want to deal with, but when you have no choice - you deal with it.

I would hope for you that since it sounds like most of your tumour was sucessfully removed, you shouldn't need further treatment until it comes back which could be many years. Every case is so different, so you never can be certain, but now adays it seems the docs like to reserve further treatment for recurrent tumours. Depending on the chromozome deletion/non-deletion, further treatment would be either chemo or radiation, both of which my husband has handled incredibly well. Temodar or Temozolomide (depending on where you live) seems to be the 'chemo of choice' these days, and is usually taken for 5 days (pill form) and off for 23 for each cycle. It seems most people complain of fatigue - my hubby gets absolutely exhausted at the end of the 5 days on the drugs - but little else aside from some nausea perhaps - but it sounds like if you need to be on chemo, this is and 'easier' kind to be on - but hopefully this isn't something you would need to worry about for years.

Well, talk about rambling - I'm the queen of it around here! I wish you well Anjie, and please keep us posted. It is a rollercoaster of emotions and this is a great place to let them out. There will be good days and bad, and it may sound weird, but I think it's important to embrace the bad days and let them be bad - the situation does suck and there is nothing wrong with acknowledging that, just try not to let it completely overwhelm you. It sounds like you have a great family to help you keep a positive perspective on things. Our little one, Caia, was born two days before finding out the tumour had returned yet again, and her name means 'to rejoice'. She, and her sister, have unknowingly helped us incredibly throughout this ordeal.

Best of luck to you Anjie,
~Chelsea
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