Introduction - Grade III Astrocytoma

amy79a · New User Joined: 31 Jul 2008 Posts: 9

Hello, I just wanted to send and introduction since I just found this site and have been "newly" diagnosed with a Grade III Astrocytoma. I am Amy, I'm 29 years old, happily married, with an 11 year old son.

In July of 2007, my son and I were playing baseball in the yard. We started throwing grounders at each other and I forgot that I am no longer 16. Long story short, I ended up taking a baseball in the face. After a while I had numbness in one side of my face and sought out a doctor. We eventually ordered an MRI to make sure that there was nothing there besides inflammation. Well, the numbness was from an inflamed trigeminal nerve but in August of 2007 it was diagnosed that I had an unrelated brain tumor in the right frontal lobe. Being that I was young, they felt it was benign, and I had no symptoms; I took my time with opinions and stalled until June of 2008.

June 10 I had surgery to have my tumor removed with no complications. They removed what they are estimating as 90% of the 6 cm tumor but unfortunately it came up as a grade III Anaplastic Astrocytoma rather than the grade II they had thought. I am currently working with a Radiation Oncologist to try to decide what the next step is going to be. I'll admit, I'm terrified of radiation but also know it might be in my only options. It has only a 6% mitosis rate so I really question if playing my radiation card now is the best option in case other things don't work and it becomes a faster growing tumor.

Aimster · Regular Joined: 03 Jan 2008 Posts: 38 Location: Nebraska

Hey Amy!! <<waves hand in the air>>

It's the other Amy from the gliomasupport yahoo group! I am very happy to see you here. It's a nice group of folks who have a lot to offer about their personal experiences. So glad that you stopped by!!
_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

brainman

amy79a, I am very sorry about your glioma.

As you can read in me story (links in my signature block), I too had an astrocytoma back in 1992.. but it was a grade II. There has always been a debate in the medical circles about when does an astrocytoma go from being a benign tumor to being a cancer. My doctors took the more aggressive approach and said that a Grade II was a cancer and that only Grade I could be left alone. But because of its location, they only took a biopsy to make a definite diagnosis. After that, they remomended trying chemotherapy to see if it helped. This was before they knew anything about the 1p/19q gene deletions. Nevertheless, chemo did work for me and I should no evedence of disease (NED) until mid 2005 when it recurred but this time as a Grade III. Again, my doctors were very aggressive and I had everything: some chemo pre-surgery, surgical removal of a large percentage of the tumor, and stereotactic radiation to the tumor bed just to make sure. As of my last MRI, I am once more NED.

I tell you this because my choice would be clear.... especially if I were as young as you. I would want my doctors to be aggressive. With an aggressive approach, you have an excellent chance of living 7-10 years before a recurrence. I would also ask for my medical team to do the gene deletion test. If those genes (or one of them) is deleted, your odds of a better response to chemotherapy is slightly better than if you are one of the majority of humans that does not have that particular mutation.

amy79a, 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/

amy79a · New User Joined: 31 Jul 2008 Posts: 9

Thank you for your thoughts on this. I really am leaning more towards doing the radiation. I have a list of questions for the RO and the final decision will be based on those answers. As for the gene mutations... if I am reading things correctly, I do not have them so chemo would be a mostly ineffective treatment. They originally told me while I was still in the hospital that there were SOME grade III cells found. They were pushing chemo at that time and I told them I want the full report before continuing. After they received the full report, chemo suddenly fell off their radar so I'm guessing they are looking at the deletions and my reluctance to go with it and walking away from that option. (My grandmother died with a slow growing brain tumor but it was only after her body reacted to the chemo. We all believe that the tumor wouldn't have killed her but the chemo did. Thus my reluctance to go with chemo at this time. Even the doctors didn't understand why she failed so quickly because her tumor had not done anything.)

Anyway, thanks again for your thoughts. Now I'm off to read your story. Smile

Amy

Mama 2 2

Hello Amy,

I'm glad you've found the forum - it's a great place to vent, get support, share etc.

Just to hopefully give you some optimism - my husband has a grade 2 Oligoastrocytoma without the chromozome deletions, and he responded well to chemo the first time they put him on it. You can read our full story under my signature block, but to give you some breif info, he had his first surgery in 02, recurrance and second surgery in 05, radiation in 06, recurrance in 07. He was put on chemo in Oct 07, we were skeptical about the chemo working since he didn't have the deletions but we were happy to find out that it had cleared up the tumour after 3 months.

They kept him on it for only another three months, then took him off - but unfortunately it came back again in the three months that he was off. They think that perhaps they didn't keep him on it long enough, but they are also concerned about the tumour becoming immune to the chemo. He has been back on it for two months now, and we'll find out next month if it's still working.

I'm sorry to hear about your Grandmother. Was that some time ago or recent that she passed? My husband had very low side effects from the radiation, and takes the chemo pretty well too. Like you, he is young (now 32, though 25 at diagnosis) and in general good health otherwise which helps a lot I think.

Its a pretty crappy situation to be in, and I wish you all the best. My thoughts are with you and your family.

~Chelsea
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis

brainman

Amy, most gliomas seem to have some degree of mixed grade present. One of these days the scientists will figure out a way to use that fact to better give a prognosis. But until then, they will (or should in my opinion) treat you as if all of your tumor was a grade III.
_________________
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/

artaran

Your situation sound a lot like my son's, except that he was diagnoses at 23. He also had no symptoms and an anaplastic astrocytoma. Astrocytomas are not known to have to beneficial genetic deletions.

We did a great deal of research and decided to go with the recommended treatment by UCSF, which was chemo (temador) and radiation simultaneously for six weeks followed by a year of chemo given for five days once a month. Though we were very worried, being young, my son had few side effects due to the treatments, he even ran and placed 7th in the Big Sur marathon right after he finished the radiation chemo combo treatment. During the year he underwent the chemotherapy, he trained for and ran the Boston marathon and finished up his Master's degree. Though these treatments are spooky, they are very well tolerated especially by the young(and healthy) and considering how aggressive a grade III glioma can be, they should be seriously considered.

I suggest you get all the information you can on this before you decide. Be sure to talk to some of the brain tumor centers. Also during treatment, it helped my son to maintain a vigorous exercise program plus he made it a point to eat very healthfully.

My heart goes out to you and I wish you the very best of luck.

Arleen

amy79a · New User Joined: 31 Jul 2008 Posts: 9

I want to thank you all for your stories and experiences with radiation. After speaking with the Radiation Oncologist, I have agreed that we will do radiation. They are supposed to call me some time this week and we are tentatively scheduled to begin next week. There is still a chance of us changing our mind because the tumor bed is very close to the optic nerve and the doctor is concerned about damage to it. He said he would run some simulations to determine if he can minimize the rads that the optic nerve receives to try to prevent damage. (Apparently, the typical brain rads is 6000 but the optic nerve can only handle 5400.) With any luck I will know in the next day or so what his verdict is.

Thank you all again. Your stories have made me feel a lot more confident that radiation CAN be done without the side effects I've seen occur.

Chelsea - My Grandmother passed two years ago at the age of 72. She had been perfectly healthy until she had a "black out" one afternoon and actually walked herself to the hospital after it happened. (She had blood running down her cheek from hitting her head.) They did an MRI and found what appeared to be a large benign tumor in the left frontal lobe. (Opposite lobe of mine) They did a biopsy and it came back grade two Astrocytoma and they decided chemo was her best option. She started Temodar within the month and two months later she died. Her counts had literally bottomed out and did absolutely nothing for her tumor in that time. (Unfortunately, my family tends to agree with whatever a doctor says so we will never know if a second opinion would have said to try something else given her age. As you can probably already tell, I am not of this type of person and I will fight the path until I KNOW it is the right decision for me.) Anyway, even though situations may not be the same... that is why I will avoid chemo if I possibly can. Temodar is deemed a "tame" chemo but if it could kill her like that... I will bide my time with it until I absolutely have to have it.

Ok, this ended up way too long. I apologize.

Huggles,
Amy

brainman

Amy, this is a really big decision but, as a distant observer, I do think you are making the right one. Will it be stereotactic radiation or whole brain? Hopefully, they will not damage of optical nerve.

You remain 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/

amy79a · New User Joined: 31 Jul 2008 Posts: 9

Jim,

It will be external beam radiation aimed at the existing tumor bed and surrounding area. They are telling me Gamma Knife would be an option in follow-up if needed. I had them reverify the Gamma Knife option multiple times because I had read a few times that Gamma could no longer be used if you had standard. I'm just going to have to take their word on this one. (I've spoken to two different Radiation Oncologists about it and both said the same thing.)

It looks like I will start on Wednesday with simulation. I've still got my lingering doubts because it's hard to base a decision solely on the fact that you would rather recover to 100% once than get back there and have to do it all again. (I'm still recovering from surgery and find it better to have to "get back to myself" once than get there and be brought back down. *sigh*) Sometimes I think it is the wrong reason to do something like this but... If I weren't so darned stubborn I'd be doing it anyway so...

Amy

brainman

Amy, as you already know, the problem is that every organ only can take a certain amount of radiation. That is one of the reasons why the gamma knife might still not be an option. The other reason that it might not be an option is that the gamma knife as a limit on the size of the area to be irradiated; small areas are better than large areas. Gamma knifes are often used if following other radiation treatment, the radiologist still can see small areas that need more radiation.

You probably already know all this but future readers may not Wink

.

Always 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/

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