Need some support please-oligoastrocytoma

anjiep · New User Joined: 15 Jun 2008 Posts: 7

Hello everyone!
I am not sure if I linked to my first post correctly, but I gave it a shot. Basically, less then a month ago, I was diagnosed with a grade II oglioastrocytoma in my right frontal lobe. I am 29 years old and 28 weeks pregnant. I had no symptoms before I started having “absence” seizures. I had surgery 3 weeks ago today.
I saw a neuro-onc last Friday. I was prepared to hear that I would possibly need radiation and/or chemo based on “stuff” I found online. I told my family what I had “learned”. Well, my neuro-onc said that I would have a MRI with contrast after the baby is born, then watch, wait, treat. She said I did have “cancer”, (which seems to be contrary to what my online research indicates, but I guess it’s just a word). Anyway, she did say that the tumor is a slow growing. She said the tumor is not cured with surgery alone due to microscopic cells left behind, and there is a 100% chance it will grow back, but she is comfortable waiting for signs of re-growth to treat.
I suppose this was all positive news, especially when we thought I may have to undergo treatment as soon as the baby was born. Here is where the “need support” part comes in. Everyone is so excited about the “great news”. They are glad to hear everything went “so well”. Now don’t get me wrong, I know this could be a lot worse. I am trying to keep a positive attitude. I don’t want people to feel sorry for me, but I don’t think things are so great. I am still really scared. I feel like everyone took a big sigh of relief, and things are back to normal for them. And I feel like my life as been turned upside down, and it’s not right side up quite yet. I feel like I am obsessed with this darn thing, when I should getting on with “living life to it’s fullest”. When I repeat what I was told by the neuro-onc to friends and extended family, I have been told that "nobody knows" what will happen and I should not focus on that because there is a good chance it "won't even happen". I almost feel like they don't think I should be "talking like that", and I am being negative. I don't really think I am negative, just trying to be realistic. I have always been a very positive and happy person. My mom, husband, and sister in law were at the appt with me and don't say things like that, but I still feel like maybe I shouldn't "keep bringing it up". They, of course, have never said they don’t want to hear about “it” anymore, but that is what I am thinking. I suppose that fact that I am pregnant and very hormonal doesn’t help! And that is a whole other issue. I am trying to relax, since stress isn’t good for the baby, but I’m worried about her too. They assured me that at this point in my pregnancy, the anti-seizure meds they put me on “shouldn’t” harm her, but I am the type of person that is hesitant to even take Tylenol while pregnant, “just in case…”
My husband is back at work and I am home by myself all day. I have always been such a busy person, all of this time on my hands is not usual for me. Maybe it will get better when I get back to work. Sorry I have rambled on and on… Can anyone relate, or have I completely lost my mind? I have pretty much been making cheesy jokes about this whole thing since it all started, guess it's my coping mechanism. But when I am alone, I break down and cry. I don't want to stress anyone else out. I know this is hard on everyone else too. Well, if you have made it through this entire post, thanks!
Anjie

http://cancerforums.net/viewtopic.php?t=9701

CAT130G · Regular Joined: 26 Feb 2008 Posts: 14 Location: Texas

Anjiep,

You are definitely not alone; you can read my story in my signature link. I have a presumed low grade astrocytoma II, diagnosed in Jan 2006. I have not had surgery yet, but there is always that question in the back of my mind of all of the "What if's.....” Every one of us reacts differently and every case seems to be so different in so many ways. But I definitely worry more than I should, and just have to catch myself and give it to the Lord. I lift you and your family up in prayer. This forum will give you a insite and a community to share your thoughts with.

Your fellow brain cancer journeymen.

Greg
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ksplat

Dear Anjie

I am so pleased to hear that your treatment may/will start after the birth of your baby! It would have been such a relief to hear the tumour is slow growing & you are able to take a 'wait & see approach".

I can fully empathise with your mixed feelings in regard to how other people have reacted to this news. If you look alright & feel alright then people (family/friends) think you are alright! In the meanwhile you are beating yourself up over the "what ifs" & "maybes"! It is normal to feel these emotions & frustrations. I would suggest you find someone to talk to about it, a counsellor maybe? Husband, Parent, or a close friend. Don't keep these feelings festering internally. This will do you no good at all!

We are a fantastic community offering support & comfort. You can come here anytime with your concerns, complaints, questions or just to "rant & rave".

I will keep you in my prayers & thoughts.

Cheers, 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"

brainman

Anjie, I am very sorry about your cancer (yes... Olygodendroglioma grade II is cancer)... and at such a critical point in your life! I am glad that you will not need chemo until after the baby is born. Fortunately, a grade II glioma does not grow very fasts and does not metastasize even to other parts of the brain, so waiting does not endanger your life.

You 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 again Anjie,

You are SO not alone in how you feel - I can completely relate. I think back now to 6 yrs ago when this whole thing began and we would joke about it all the time (though at the time we didn't fully comprehend the situation either . . . ).

Obsessing over the situation is completely normal - I don't think an hour goes by, let alone a day, when I don't think about it in some way. It can be really hard when everyone around you wants so much to focus on the positive (with truly good intentions of course), but it makes it harder for you to be realistic, without sounding like you're being negative or only think of the 'worst case scenario'. I would start to feel guilty about trying to be realistic because everyone would tell me 'you shouldn't think like that', or 'yeah, but . . . (insert postive comment here)' - I even felt like I shouldn't cry because I didn't want to worry other people - but that's one of the reasons I ended up here, and it has really helped. I also think the people that love you so much probably don't want to accept the reality of the situation so they always want to hold onto the positives and the hope. It's getting late, so I don't think I'm explaining myself well, but I hope you get the idea.

I can't even begin to imagine what it must be like to go through this while pregnant though. I truly feel for you as I understand about not wanting to take anything while pregnant. It is good news though, that they were able to remove so much surgically, and that they will wait until recurrance to treat. We had over 3 1/2 happy yrs before it came back the first time.

Just know you have every right to feel every emotion you feel (especially while pregnant!). Maybe find someone really close to you, who you can ask to just listen to you, and accept what you say - tell them you don't need advice or comments - just to listen and acknowledge your feelings. People do seem to feel the need to try and 'fix' how you feel - they think they need to make sure you only think positive thoughts . . . but I think what you probably need right now is just to have someone to acknowledge how you feel and that it's valid. And it is.

~C~
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~Life's too sweet to be bitter~

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anjiep · New User Joined: 15 Jun 2008 Posts: 7

Hello everyone. I thought I would give a quick update of how things are going for me. My daughter was born last Friday. I ended up developing preeclampcia and was induced at 36 1/2 weeks. She was only 4lbs 4.6oz, but healthy Smile

We brought her home Tuesday and things are going great!
During the last few weeks of pregnancy, I starting having some seizure activity. The symptoms were rather vague, as they were when this whole thing began (well, even more vague, but I am more aware of things now). I had some numbness in my arms and hands, along with some small "twitches" in my face. I would also notice that the left side of my face felt slightly heavy. It probably sounds weird, and the sensations were so mild it's hard to explain. My OB told me that I wasn't having seizures or seizure activity and to let him know if I had any "absence" episodes. I called my neuro-onc anyway. She increased my Keppra and said it WAS seizure activity, and that hormone levels can effect things. She didn't want me to progress to gran-mal seizure. The "episodes" stopped after the dose increase. I had tried to talk my neuro-onc into taking me off the seizure meds since the brain tumor had been removed and I had never had a "real" seizure, but she wouldn't do it. I suppose she knows what she's doing.... Confused

Has anyone else had such mild seizure activity and encounter doctors that appear to think you are crazy?
I am going to have an MRI with contrast now, since I wasn't able to have the contrast while pregnant. I wonder if anything new will show up and if the contrast really makes a difference...I am assuming this won't show anything new... but I'm still a bit nervous....
I wonder if the seizure activity could be due to tumor growth, or is it normal to continue to have seizures after going through surgery?
I am just kind of rambling now, but any insight would be great...

I also wanted to thank everyone for responding to my original post and for all of the support! This is a great place!
Thanks!
Anjie
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My first post: http://cancerforums.net/viewtopic.php?t=9701

nancyj19 · Regular Joined: 26 Aug 2008 Posts: 12

Hi Anjie

I am new on the forum, but seizures can be from the tumor growth or maybe nerves it is pressing against. Also you can have them after the tumor is removed. My husband has an antaplasta oligoaystrocytoma (WHO III), meaning a grade 3. He was having a falling sensation but wasn't moving. Our neurologist ignored everything my husband was telling him. The general practioner I was using thought it was mini seizures. Once on seizure med, falling sensation stopped.After surgery he was on seizure meds for about 10 months. He had to see a neurologist and be weigned off slowly. After surgery he never had a seizure. It is my understanding the medication keeps the swelling down. Labs are very important for dilantin levels. Hope this helps.

Congratulations on the sucess of a healthy baby. even at the worst we still have things we can be thankful for!

Nancy Laughing

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Nancy Slayton

anjiep · New User Joined: 15 Jun 2008 Posts: 7

Thanks for the reply. I have also had a "falling sensation" when I close my eyes, I never thought that might also be seizure activity....hmmmm...amazing what you learn!
Anjie
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My first post: http://cancerforums.net/viewtopic.php?t=9701

brainman

anjiep, I am always amazed at what the brain can do. Since it controls everything else in the body, if it is damaged, it can do some almost anything. It does not mean that there is any seizure activity.
_________________
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/

nancyj19 · Regular Joined: 26 Aug 2008 Posts: 12

Hi Anjie

My husband was the one with the tumor, but he handled it well. I understand what you are goin through, all the questions? Have you contacted the National Brain Tumor Foundation? They send you literature, emails and can answer so many of the unanswered questions.
My husband is still on temador, but doing well. I have some questions to post and want to tell my story, but I am too tired now. I care for my father with alzheimers.

Nancy

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