silent

Tammy · Posted: Tue Nov 27, 2007 10:17 am Post subject: silent

Hi there, I was surfing around looking for a few topics, and this site came up. I have had my biopsy done already and I been diagnosed with gr2 oligodendroglioma, it already has been to three other places for second and third opinions, I dont know why he sent it to so many. Now my doctor sent the biopsy out for another kind of test, which I didn't ask about once again, so I find myself here. I read a few messages about the kind of tumor. Sorry for sounding abit odd, just having a difficult time making terms with it. When they say gr2 that means a type a cancer? I don't ask my doctor very many questions, when I am in his office, I am blank about everything. I will be asking him on my next visit I have already promised myself that.

brainman · Posted: Wed Nov 28, 2007 3:29 am Post subject: Re: silent

Tammy, I am very sorry about your cancer. I am glad that you found us and I hope that you find the support and information here that you need.

My full story is at the link in my signature block. Briefly, in 1992 I was diagnosed with an astrocytoma (cousin to an oly..,) grade II that recurred in 2005 but was then diagnosed as an oligodendroglioma grade III.

I assume that this that you are feeling overwhelmed enough by your diagnosis so I do not want to give you more information than you need. However, I do have both personal and professional experience with brain cancer. My mother died of a grade IV glioma (GBM). Here is the scoop on the "grade" and "stage" issue. For gliomas, the two are almost interchangeable. Nevertheless, in general, the "stage" of a cancer is based on its size and how much it has spread. Gliomas do not spread so true "staging" is not that common. Most, if not all, of the time, we talk about the grade of a glioma. In general the grade of a cancer is a measure of how aggressive or mutated the cells look under a microscope. The number ranges from 1 to 4: 1 is a benign (non cancerous) tumor; 4 is an extremely aggressive tumor. Yours is a low grade cancer.

It is NOT uncommon for doctors to get second opinions when staging (or grading) a biopsy. The differences can be so difficult to see. This is especially true if you are at a smaller medical center. I truly believe that my original cancer was miss diagnosed because they did not get a second opinion. My current medical team believe that it was an oligodendroglioma all along.

Staging is not the only reason your doctors will send your biopsy to other hospitals. Even some major medical centers use outside labs to do some sophisticated tests. In the case of a glioma, they could (and often do) send glioma biopsies for a special genetics test. There a a couple of genes that, if not present, are good news for you in terms of your likelihood to respond to chemotherapy. Listen for, or better, ask about the 1P/19q gene deletion.

What you experience in the doctor's office is also not uncommon. You need to get a smallish notebook and divide it into sections. List in it all of your medications (including nutritional supplements and alternative treatment) and keep that list current. I also carry a little card behind my driver's license with medications (including dosages), allergies, blood type, and contact info. That is where EMT's will look if I am unconscious Wink

. In your "medical journal" also list all the questions you have for your medical team and the answers you receive. ALWAYS, take any answers you receive on this site or any other site to your medical team to check with them. Something I tell you may not apply to you and your doctor can clarify any incorrect or misstated information. In other words, use this forum and other sites to find questions you need to ask your own medical team. In my own journal, I also keep a running account of my medical history. Take the journal with your to your doctor's appointments. That will help with those blackouts we have all experienced the moment our doctor walks into the examination room Smile

. My doctors are all accustomed to me taking notes Very Happy

.

Tammy, I will stop here. I hope that I have not overwhelmed you. 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/

Tammy · Posted: Wed Nov 28, 2007 8:51 am Post subject: Thank You

Hi Jim, thanks to you for your fast responce Smile

. I will invest in a small notepad as you did suggest. I will be back to talk with you soon... as I am not feeling the best today, darn flu going around here, and I had to catch it. Rolling Eyes

I did read your story yesterday, you have went through so much, I can only hope I have the strength you have. I think what you are doing is very inspirational for myself and others. Take care and I will be in touch.
Tammy Very Happy

brainman · Posted: Wed Nov 28, 2007 4:41 pm Post subject: Re: silent

Hi Tammy,
I am glad that my story is an inspiration to you. There is no reason that 15 years from now you too will be an administrator on this forum Wink

. Our prognosis is not that bad anymore. When I was diagnosed, I was told that only 10% of people with a glioma grade II lived past 5 years and only 1% more than 10 years. Now, depending on how aggressive you are at this point, those odds are almost totally reversed. The odds are still pretty bad that sometime in the next 10 years you will have a recurrence... mine recurred in 12 1/2 years. But even then there are still more options. By the time yours recurs there might be even newer and hopefully better option to try.

Hang in there and you will make it through this.
_________________
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/

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

Hi Tammy. I'm noid. I was just recently diagnosed with a small glioma. I've been gone awhile because i was too upset to post on this board, but it's not so bad really. welcome , and nice to meet you. Very Happy

ksplat · Posted: Thu Nov 29, 2007 6:08 pm Post subject: Re: silent

Hi Tammy
I found your post on "policies" thread the other day & asked Jim (brainman) to move it to this Brain cancer thread. Welcome to our community. You will be supported here by others who are/have experienced similar conditions to yours or the loved ones/carers of sufferers.
Sorry to hear of your Oglio diagnosis, there are many positive outcomes related to this cancer & I hope you receive plenty of positive replies on this forum.
Jim's advice about the notebook & journalling is an excellent one & a great place for you to start taking control. Do you have local support from family/friends? I do hope so.
Don't be shy about posting on here. You can use & abuse (no cussing though) us anytime.
My thoughts & prayers & with you.
Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Thu Nov 29, 2007 8:31 pm Post subject: Medical Journal

Hi all,

My entry to my blog last night was an outline of a medical journal. Here is an outline of the major headings:

Personal Information

Emergency Contact Information and Location of Legal Documents

Current list of medications including alternative medicines and nutritional supplements

Current list of doctors with addresses and phone numbers

Past Medical History

On-going Medical Journal Entries

Questions and Answers

Appointments
_________________
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/

Tammy · Posted: Tue Dec 18, 2007 12:06 am Post subject: Silent One

Well I recieved my call this afternoon to see the specialist again. He had sent my biopsy out again for some test thats not done to many places. Me being silent as always never asked why and what for. But! I will know everything tomorow, we have a 3 hour drive, I am hoping for good news, and YES I wrote everything down this time, going to ask all what I want to know, my silence is over..ha ha!! Being short notice I have a bit of a nervous feeling, but I am trying to be positive. I have been getting some councelling and it seems to be helping with my fears. I must go and get some rest. Take care all and I will be back with the news.... MERRY CHRISTMAS in case I am late in returning here........God Bless you all !! Smile

brainman · Posted: Tue Dec 18, 2007 4:58 am Post subject: Re: silent

Tammy, good luck at your doctor's appointment. I do hope you get good news.

Depending on the size of the medical center where you are, there could be several special stains that your oncologist my want to have the results from before starting chemotherapy or other treatments. Even at larger centers, they often need to sent out for a genetics test to see if you have the 1p/19q gene deletion. If you do, that is good news because it means you have a slightly higher probability on responding well to chemotherapy.

You continue to be 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/

Tammy · Posted: Tue Dec 18, 2007 8:50 pm Post subject: silent

well I am back with some good news. The last tests for the chromosomes isn't in as of yet, doctor sent it to St Louis, this is to see if it will respond well to chemotherapy. My doctor wants to take the watch and wait for a bit. He says there is so much controversy on the type of tumor I have (Oligodendroglioma gr2), I feel he has chosen a right decision as I only have partial seizures as of now, and with the dilantin its controlling it well. Just as long as my MRI shows that there is no change. I will be going every 3 months for MRI'S, and I get to have them taken here in my home town, I so love this! beats travelling 3 hours for every test. Also he said there are lots of people who have a long term survival rate with this type. *JIM* as of one =)! I hope I can keep these good feelings I have right now, been some time since I felt this confident, it's comforting... well off to wrap gifts now. I will be back! Night Night to you all...
PS> ksplat nice to meet you.... and yes I have family thats helping me very well although I do go for counseling. Thank you for the post and I am sure we will be typing to each other again in the near future!
And noid..........Nice to meet you also. Keep your spirits up, I know its hard, I try to find it every day when I wake. Take a deep breath and say something nice about yourself and beleive it,,,,it does help ...now its NIGHT NIGHT....... =) xox

plugh · Regular Joined: 18 Oct 2007 Posts: 15

hi Tammy. I have the same symtpoms as you - few months further along though. I was getting simple partial seizures and an MRI revealed a tumor. I went to Memorial Sloane Kettering in NYC and they performed a craniotomy removing 90% of an Oligo Gr II (via biopsy). they are now recommending wait and see as well - no chemo/radiation. Their explanation is that radiation is a once only treatment and chemo has a maximum life time treatment per protocol (there seem to be about 4 protocols that can be used). They want to keep a 'full arsenal' for use in event of a recurrence. I have the gene deletion which is helpful for chemo. My shcedule is now MRIs every 3 months. No seizures since a month before surgery (ironically - I almost dropped the whole thing because the siezures seemed to stop!). Hang tough and all the very best.

Tammy · Posted: Fri Jan 04, 2008 12:16 pm Post subject: Re: silent

Hi everyone, well the holidays are over....finally!! never I would of thought I would dread this time of year, it sure was a really different holiday. Was not into it at all. depressed a lot, cry baby. Not havin the great feeling I was having before Christmas. Tired a lot, very emotional almost feel like I am going nuts at times, laugh,cry,anger, I am like a light switch, flicking on and off. My doctor sent me for some prolactin tests>? and TSH. I dont know what thats for, anyone know anything about that blood work? I know it has something to do with thyroid, well I think but why take that with a brain tumor? anyhow...one good thing my platelets are pretty good now. I am wondering when they will decide to remove my tumor...I have a hard time knowing its there. I thought I was doing well but the holidays did something to me, emotionally. Well thats enough self pitty.....
How is everyone else making out? and you plugh...how are things? been awhile since I was here...anything new with any of you? You did have your tumor removed right? mine has not been removed yet, only a biopsy was done. And that was back in Octber. Take care and talk real soon xox Confused

Also does anyone know about a cancer treatment center in St Louis? thats where my doctor sent the biopsy to see about the 1p19q testing. Still did not received the results, I do wonder why they sent it all the way to the US, maybe no equipment here in Canada can do this testing? *shrugz*

well now I am off for a nap...can't go a day without a sleep. Talk soon.

brainman · Posted: Fri Jan 04, 2008 4:01 pm Post subject: Re: silent

Hi Tammy. I do not know what the "prolatin" test is. However, the TSH is to check your thyroid function. If it is not functioning like it should, you will feeling tired. It is easy to treat... two or three little pills in the morning usually takes care of the problem. I think your doctor is just trying to rule out all possible causes. However, from a distance it sounds like you might be having a run-in with standard depression. You will need to see a therapist to get that checked out.

I have both problems... non working thyroid and depression... actually, I am mildly bipolar. There are days when I just cannot make myself get out of bed. I think depression is a rather common thing along brain cancer patients if not all cancer patients. What we are facing is not easy. We need to make use of every tool available to us in order to cope.

I was fairly "up" and activity through the Christmas season. However, when all of my family left on the 28th, this house seemed so empty and quiet that I felt alone and lonely. That was enough to send me into depression for 4 days. I just staid in bed and watched TV. I am better now. Nevertheless, I know that it can and probably will happen again Razz

.

As always, 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/

Tammy · Posted: Fri Jan 04, 2008 5:29 pm Post subject: Re: silent

Thanks Jim, You always have a way with words. And yes I think depression in pondering within me. Well a friend called me to go out to the movies tonight,* she only asked 3 times already, I always say no but going to go this time) I am not really up to it, but I am gonig to go! Maybe it will do me some good. Maybe you know the movie, NATIONAL TREASURE:BOOK OF SECRETS staring Nicolas Cage. They say its suppose to be good. I am sorry that you are feeling a bit depressed, its not fun trying to deal with everything, remember your not alone, thats what I like about this site. Thank you for responding to me all the time. I must get ready, and I will be talking to you soon. Take care!! =)
Thinking of you....

Tammy · Posted: Tue Jan 22, 2008 6:23 am Post subject: Re: silent

Well, how is everyone? I hope you are all doing well. I am still waiting to hear from my biopsy once again (it was taken in Oct) that was sent to the states, I realy don't understand why it is taking so long. I do have another MRI in Feb, and visit with my doctor in March. Has anyone waited as long as this for everything to get done with? I know what I have and what stage just I dont know why he is sending it away all the time and pushing everything ahead >? I dont know just starting to wonder about things. They say everything happens for a reason. I have found that I do get a lot of very hot sensations on the top and side of my head along with my forehead, but maybe that has something of other sorts, probably getting paraniod now, *ha ha*And BTW the movie....never again I had so many anxiety attacks that I don't think I am ready for the great outdoors of people...*shrugs* oh well come within time I guess...Take care all. Tammy Confused

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