Oligoastrocytoma Grade III

JessC

Hello everyone,
I am new to this site and new to brain tumor. I found out there was a "spot" in my brain (left frontal lobe) after a CT scan in Sept 09. They thought that it was a stroke though and it wasn't until an MRI 2 months later that they discovered it was infact a tumor. I am 28 so I knew it wasn't a stoke. I had surgery Jan 4, 2010 to have it removed and am doing well. The recovery process hasn't been fun, but I don't have any serious side effects from the surgery so I count myself lucky. I just got the pathology back and was told it is a grade III oligoastrocytoma. The doctor didn't really tell me much about the kind of tumor other than to tell me that he has referred me to the Cancer Center for an appointment. He wouldn't say if it was malignant or benign, saying that it was neither and both at the same time, which doesn't make any sense. I am waiting to hear from the Cancer Center, but in the mean time, I was wondering if anyone here has dealt with this type of tumor? Does anyone know whether or not it is malignant? Does anyone have any stories to share. I choose to be optomistic and have faith but know that information is extremely valuable as well. Thank you for taking the time to read this and for any comments you may leave.
-Jessica

kenneuf

Not alone with this
Jessica, I had a Oligliodendreglioma diagnosed as level 2 in 2006 they removed most of it.
I did not have any other treatment at that time. A few months ago, there was some new growth. I had another awake craniomoty Jan 5th. The small remainder that they couldn't get out was diagnosed as a anaplastic (level 3) oligliodendreglioma. I think they may be similar to a astrocytoma. In my opinion, this is unfortunatley cancerous and I am suprised your doctors didn't make this clear. They don't oficially call it cancer because it doesen't spread to other parts of your body. My own thoughts are now to treat this as aggresivley as possible. I just started Temodar and I am having Stereotactic Radiation on the 24th and 6 weeks of low grade(external beam)radiation. Tanking my career in the process. Just want to see the kids (2 boys 3 and 5) graduate High school. My doctors have all told me this is the best treatment plan available now. My name is Ken and I live in Rochester ny and I am 38 yrs old. Hopefully, this may help with your discussions with your doctors. My Tumor was in my right frontal lobe.

cindysuetoyou

anaplastic oligodendroglioma
Hi, Jessica.

My 26 year old son had a tumor removed in May of 09. It was an anaplastic oligodendroglioma. He then had 6 weeks of radiation and chemotherapy--Temodar. Now he takes Temodar for 5 days, and then has 23 days off. You would never know that he had brain surgery and had a tumor.

The radiation made my son lose his hair, and it made him very, very tired, but his hair grew back and he's regaining his strength. He is back at work part time and he's started back at the gym and he plays on a basketball league. He has a hard time when he takes Temodar. He feels sick to his stomach and he's tired and gets headaches and has insomnia, but after seeing what other chemos are like, we feel lucky that he can take something like Temodar. It's just a pill that you take once a day. No hospitalization or IVs.

We are new to all of this too. I hope this helps. If you end up taking radiation and chemo, then at least you'd have some idea about what to expect. Could you ask your doctor to explain what he meant by malignant and benign, both and neither?

with love and blessings,
Cindy

mark7

surviving
read my story



read my story(survivor of oligo)that will shed a light on what you are facing

niallsmum

kenneuf said:

Not alone with this
Jessica, I had a Oligliodendreglioma diagnosed as level 2 in 2006 they removed most of it.
I did not have any other treatment at that time. A few months ago, there was some new growth. I had another awake craniomoty Jan 5th. The small remainder that they couldn't get out was diagnosed as a anaplastic (level 3) oligliodendreglioma. I think they may be similar to a astrocytoma. In my opinion, this is unfortunatley cancerous and I am suprised your doctors didn't make this clear. They don't oficially call it cancer because it doesen't spread to other parts of your body. My own thoughts are now to treat this as aggresivley as possible. I just started Temodar and I am having Stereotactic Radiation on the 24th and 6 weeks of low grade(external beam)radiation. Tanking my career in the process. Just want to see the kids (2 boys 3 and 5) graduate High school. My doctors have all told me this is the best treatment plan available now. My name is Ken and I live in Rochester ny and I am 38 yrs old. Hopefully, this may help with your discussions with your doctors. My Tumor was in my right frontal lobe.

Astrocytoma grade 111
Kenneuf, I am sorry to hear of your diagnosis of a grade 111 oligliodendreglioma. My son, aged 33, was diagnosed with a grade 111 astrocytoma in December 2008. The surgeon 'debunked' the tumour, but couldn't remove it entirely. He had 6 weeks of radiation therapy afterwards. Since then, he has been reasonably well. Lost and regained his hair. He is on medication, including steroids and anti-convulsants. He is not allowed drive (he drove for a living) and this, most of all, is getting him down. He's tired a lot of the time, and seems to forget things easily. The problem is that I don't know what to expect. The doctors told us he had only 2 - 4 years to live, and yet he seems so well. He has an MRI every 3 months and, so far, there is no change in his tumour. Does anyone know what to expect?? Will he get better, or will he suddenly become ill again?? I don't know how to help him. He's very quiet and gentle and doesn't ask for help atall. I hope you continue to stay well. I understand how you feel about wanting to be around for your children. My son has three children, aged 15,11 and 5. Stay strong and hopeful.

Lu_Cinders

kenneuf said:

Not alone with this
Jessica, I had a Oligliodendreglioma diagnosed as level 2 in 2006 they removed most of it.
I did not have any other treatment at that time. A few months ago, there was some new growth. I had another awake craniomoty Jan 5th. The small remainder that they couldn't get out was diagnosed as a anaplastic (level 3) oligliodendreglioma. I think they may be similar to a astrocytoma. In my opinion, this is unfortunatley cancerous and I am suprised your doctors didn't make this clear. They don't oficially call it cancer because it doesen't spread to other parts of your body. My own thoughts are now to treat this as aggresivley as possible. I just started Temodar and I am having Stereotactic Radiation on the 24th and 6 weeks of low grade(external beam)radiation. Tanking my career in the process. Just want to see the kids (2 boys 3 and 5) graduate High school. My doctors have all told me this is the best treatment plan available now. My name is Ken and I live in Rochester ny and I am 38 yrs old. Hopefully, this may help with your discussions with your doctors. My Tumor was in my right frontal lobe.

Grade II Oligoastrocytoma
My fiance had a seizure on September 20th 2010 which came as a complete shock as he was so fit and well and we had just had a wonderful few days in France together - partying until the early dawn, canoeing down the Dordorgne and swimming. It came as a complete shock when 2 days later he collapsed. In the last 4 weeks he has had all the scans, the surgery and results and he is now back at work. However, the doctors have been unclear to us and it is only when he requested a 'Well to return to Work' letter that we found out the type of tumour - Grade II Oligoastrocytoma. Since then we have searched the internet high and low and read medical reports etc but there does not seem to be great news. I am scared and worried about this as although his tumour is low grade/benign, all the reports suggest that reoccurance is high and liklihood to transform to a higher grade is high. I don't even want to talk about the survival %s. I can't bear it. I am terrified by this as I can't seem to find any happy long term survivors to give us hope. Each day is hard right now and we can't seem to get positive.

Is anyone out there that could help ....

Lu_Cinders

cindysuetoyou said:

anaplastic oligodendroglioma
Hi, Jessica.

My 26 year old son had a tumor removed in May of 09. It was an anaplastic oligodendroglioma. He then had 6 weeks of radiation and chemotherapy--Temodar. Now he takes Temodar for 5 days, and then has 23 days off. You would never know that he had brain surgery and had a tumor.

The radiation made my son lose his hair, and it made him very, very tired, but his hair grew back and he's regaining his strength. He is back at work part time and he's started back at the gym and he plays on a basketball league. He has a hard time when he takes Temodar. He feels sick to his stomach and he's tired and gets headaches and has insomnia, but after seeing what other chemos are like, we feel lucky that he can take something like Temodar. It's just a pill that you take once a day. No hospitalization or IVs.

We are new to all of this too. I hope this helps. If you end up taking radiation and chemo, then at least you'd have some idea about what to expect. Could you ask your doctor to explain what he meant by malignant and benign, both and neither?

with love and blessings,
Cindy

I hope your son is doing ok.
I hope your son is doing ok. My fiance has found out in the last 4 weeks that he has a tumour and has been operated on to 'de bulk' it. We have since found out it is a Grade II Oligoastrocytoma and are coming to terms with what that means for the future. We are both scared but know we need to get strong to face this and make the most out of life.

I do hope things are ok for you and your son.

cindysuetoyou

Lu_Cinders said:

I hope your son is doing ok.
I hope your son is doing ok. My fiance has found out in the last 4 weeks that he has a tumour and has been operated on to 'de bulk' it. We have since found out it is a Grade II Oligoastrocytoma and are coming to terms with what that means for the future. We are both scared but know we need to get strong to face this and make the most out of life.

I do hope things are ok for you and your son.

Hello!
Hi, Lu Cinders.

Thank you for asking about David. He's doing even better. He had a clear MRI in September and he's moved up to Portland in order to go back to college. He's at Portland State University and he's loving it.

How is your fiance doing? I think you both are at a very hard stage. The initial diagnosis, learning about brain tumors, the surgery, deciding on treatment options--all of that was totally overwhelming for David and our family. It took us about a year to regain our emotional balance. I cried every day for a full year. But things are slowly getting better for us. And I believe that they will get better for you and your fiance too. It takes time, and it's a battle to stay positive. But it's worth the fight!

I'm going to copy and paste a message that I just received from a gal on this network. It really encouraged me and I hope it helps you too.

Here it is:

Dear Cindy Sue,

I was 26 when I was diagnosed with a Grade III Oligoastrocytoma in 1995. I am a three-time, 15-year survivor who got her master's degree after two brain surgeries. I too heard that there was not much hope for me back then and I am still here and functioning perfectly.

I was also an original trial participant on Temodar (Temozolomide) back in the mid-90s after my 2nd surgery. Statistics are still not good for survival of a Grade III but I don't pay attention to them because I am obviously still here. I am a huge fan of Temodar and an advocate for it. What part of the brain was affected, if I may ask? That tends to make a difference in the person's long-term functioning too.

Please feel free to message me privately as I hope I can be of some encouragement or assistance to you. Hugs to you and yours.

Johanna


Isn't that a wonderful report? I love hearing reports like this. It really encourages me! I hope it helps you too.

Please keep posting on this network and please let me know how you and your fiance are doing. I will keep you both in my prayers!

Love and blessings,
Cindy in Salem, OR

mnstjean

Lu_Cinders said:

Grade II Oligoastrocytoma
My fiance had a seizure on September 20th 2010 which came as a complete shock as he was so fit and well and we had just had a wonderful few days in France together - partying until the early dawn, canoeing down the Dordorgne and swimming. It came as a complete shock when 2 days later he collapsed. In the last 4 weeks he has had all the scans, the surgery and results and he is now back at work. However, the doctors have been unclear to us and it is only when he requested a 'Well to return to Work' letter that we found out the type of tumour - Grade II Oligoastrocytoma. Since then we have searched the internet high and low and read medical reports etc but there does not seem to be great news. I am scared and worried about this as although his tumour is low grade/benign, all the reports suggest that reoccurance is high and liklihood to transform to a higher grade is high. I don't even want to talk about the survival %s. I can't bear it. I am terrified by this as I can't seem to find any happy long term survivors to give us hope. Each day is hard right now and we can't seem to get positive.

Is anyone out there that could help ....

Lu_Cinders Oligoastrocytoma grade II
I had a grade II Oligoastrocytoma in my right frontal lobe the size of a baseball found it in 2004 and had a resection and then in 2005 had 6 weeks of small dose radiation for what they couldn't remove by surgery. 6 months after the radiation tumor wasn't noticable anymore with an MRI. Then last november 2011 i had another MRI and found recurrance for the size of a grape. Not sure what type it is this time yet (have more testing on Jan 20th) but neuro oncologist stated that it is higher than a grade II this time around. I'm glad i found it this early and for the prior blog about it being benign or malignant, it really doesn't matter with a PRIMARY brain tumor because primary brain tumors are not brain cancer even if they ar malignant according to my neurosurgeon who is a highly recommended Dr from even other neurosurgeons. They don't spread throughout your body like cancer does. The prognosis depends on location and how fast it is growing. With this type of brain tumor you would only want the best surgeons and oncologists avail as these are rare tumors and need to be treated with experienced dr's that specialize in brain tumors. I didn't have my own family with 1st tumor but now have a wife and an 8 month old son that makes a difference the second time around. Also, glad they now are more advanced in study of treating brain tumors than back in 2004. MStJean

LUKE122

mark7 said:

surviving
read my story



read my story(survivor of oligo)that will shed a light on what you are facing

oligoastrocytoma grade 111
hello my wife was diagnosed with a grade 111 back in april,since then she has had a debulking and six weeks of radio theripy,but she also sufferd a bloodclot in her brain about three months after that,but the cancer returned and she has had another debulking she is currently in hospital now recovering but they are concerned that the tumour may has changed to a grade 1111 can you give me any infomation as in london the doctors are very tight lipped thankyou

hayden61301

LUKE122 said:

oligoastrocytoma grade 111
hello my wife was diagnosed with a grade 111 back in april,since then she has had a debulking and six weeks of radio theripy,but she also sufferd a bloodclot in her brain about three months after that,but the cancer returned and she has had another debulking she is currently in hospital now recovering but they are concerned that the tumour may has changed to a grade 1111 can you give me any infomation as in london the doctors are very tight lipped thankyou

I'm just about there right now
I live in Boston Massachusetts and I have Oligoastrocytoma and the doctors have been everywhere with mine but one more thing you have to keep in mind is hope. With my friends and family helping me through this has helped me forget about it to the point that I truly enjoy my life with a brain tumor. A main point about the tumor is where it is placed in her brain. As you probably already know the brain functions for each area are completely different. My tumor is in the right temporal lobe. I barely have any short term memory. every doctor has a view on a tumor and what it comes down to is keeping positive and think about the now not future. I hope the best and if you ever need to talk send a message.

CHRIS

tristanfaulman

Oligoastrocytoma Grade III
Dear Jessica,
My name is Tristan and I can completely understand the frustration and confusion that comes along with dealing with this tumor. I was diagnosed with a type 3 oglioastrocytoma in 2008. Which I had removed in Nov. of 2008. The tumor was located in the left parietal. After surgery the doctor told me that I didn't need to go through radiation or chemo. I was fine until Oct. of 2010 when the tumor reappeared. It was deeper this time and to preform the surgery to remove it was very dangerous. It was highly likely to disable the use of the right side of my body. I had a biopsy done and the best way the doctors said to treat it was to go through radiation and chemo so that could shrink it down. That treatment ended in July 2011. It's been a year and I am doing well. But the tumor, which is cancerous, will be their for the rest of my life. I suggest reading a book called "Anti-Cancer". It's a book written by a doctor who was diagnosed with the same tumor and how he dealt and coped with the tumor and has been well. He tells you the right type of diet, exercise and treatment. If I can remember correctly, he has been dealing with it for 42 years and has done vast research. Malignant/benign- Those 2 terms have gotten in the public minds as being cancerous(malignant) and non-cancerous(benign). When in fact that malignant means growing and benign means not growing. Cancer has nothing to do with those terms. If I were you I would drill my doctor about chemo and radiation treatment. It is a **** process but the six months of hell will be worth it. I feel if I had done it the first time I wouldn't have had the growth of the second. The doctors said the re-growth was because some "bad cells were left behind". If you have anymore questions or just want to talk via email you can reach me at tristanfaulman@hotmail.com. I wish you the best of luck and remember that STRESS FEEDS CANCER! So keep up beat because these things happen and you really can't do anything about besides treatment. Be proactive and I know it's difficult but don't let it bring you down. An upbeat attitude and being able to joke about it is what I think has kept my tumor at bay. Also if your doctor wouldn't tell you if the tumor was malignant or benign you need to find a new doctor. You need a doctor will tell you everything going on in your body no matter how hard the news might be. Because the term "ignorance is bliss" does not apply to this situation.

Tristan