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Ogliodendroglioma

stew4645
Posts: 3
Joined: Jan 2012

Hey, my name is Stewart. I had a stage II ogliodendroglioma that was about 4 cm diameter. During surgery, the neuro believes to have removed all of the tumor. The CT scans have come back clean. I'm still waiting on second and third opinions from other pathology reports to know if radiation will be needed. I've heard many success stories, but also many stories of reaccurances of tumors. The discovery and surgery was only 2 weeks ago, but I'm recovering rapidly and feel great. All of this has happened so quickly and it has been surreal, yet eye-opening. Since this is all very new to me, I'm just wondering what I should expect in the future. If anyone could share experiences that they have had or from family members, I would greatly appreciate it. Thank you!

luvs2run's picture
luvs2run
Posts: 8
Joined: Oct 2011

Stewart,

I'm sorry to hear about your diagnosis, but glad your recovery is going well. I had a similar experience in June, but mine was grade 3. You should make sure that the pathologists test you for the 1p 19q deletions. If you have the deletions it is a good indicator, as it means that the tumor will respond better to chemotherapy and generally indicates a much better prognosis. Also, my N.O. told me that the 100% resection is also very positive. Since oligo is fairly uncommon, make sure you are getting treatment options from a research hospital that sees more of these. If you have the deletions most doctors will forgo radiation with a total resection and rely on either chemo or perhaps just watch and wait.

If you are like me, you are probably still in shock and are questioning what the future holds. Thanks to all of the kind people on this site and lots of internet research, I've learned that this disease is not a death sentence. There are many people who have survived 15-20+ years without a recurrance and many more who have rebounded from recurrances. My N.O. told me that I shouldn't change my retirement plans and to tell my daughter that I'll be around for her major life events.

Best of luck to you. I hope your recovery continues smoothly.

Dave

stew4645
Posts: 3
Joined: Jan 2012

Dave,

I'm 30 yrs old and I'm one of those people that never got sick or injured. So yes, I'm still am having a time processing all this has actually happenened. That said I do think I'm coping well with this pretty well. Although when I'm alone, I can't help but wonder about things. I've been reading as much as I can on ogliodenroglioma since I've returned home, just so I can educate myself as much as possible. It really helps to hear from another person about all of this. I really appreciate your response.

Best of Luck to you as well,

Stew

Kees van Beelen's picture
Kees van Beelen
Posts: 11
Joined: Dec 2013

I'm a survivor too.  This is spot on.  Only thing I would add is that because of the make up of an oligo, resections are not 100%.  The most skilled doctor cannot get it all, but temodar, especially if you have the 1p19q deletion, is very effective.  

Gaurang
Posts: 8
Joined: Jan 2012

Hi Stewart,

Just for your information that i was passed from same your situation and tumor changed his grade from II to III because i didn't go for radiation and after two months tumor recur.

I am strongly recommend you for radiation so please consult a radio onchologyst as early as possible. as per my knowledge tumor all tumor never removed from brain...please take radiation its tolrable.

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Hi Stewart

My boyfriend was diagnosed in August 2011 with the same cancer. Grade II oligodendroglioma. Like you, he was not sick, there were no seizures just headaches. It was a miracle that they even sent him in for scanning. He had no history of headaches and they were really not to bad, just so happened the walk in clinic doctor found this one to be a little odd and sent him to emergency. This is when our life changed. Within three weeks he was diagnosed and in for surgery.
The location of his tumor was center parietal lobe and deep lesion. It was the size of the top of your thumb and had another mass branched out, which they were unable to remove due to location. That part is directly in the middle of the brain… they called it “the main highway” the part of the brain used to communicate with each side. Since his surgery he is back to work, living life as he was before, completely healthy. They have not given him radiation or chemotherapy as well. He did not have the gene deletions that we had hoped for, making chemotherapy affective. Should it come to a point where further treatment is needed, radiation is the way we will have to go so far. It sounds as though they are advising you to take the wait and see approach as well. This is where we are. We have had second and third opinions only to be told the same thing. Wait and see.
His follow up MRI is tomorrow. I am anxious to see what has happened… if the remaining has grown or if anything has grown back where it was removed? Will we need more surgery or is radiation going to need to happen now.
We were told by his doctor that reoccurrence rates are high and that yes, it could come back multiform (higher grade) but … there are chances that, that won’t happen as well. It sounds as though you had complete removal, so that is great news!
How often do you go in for a follow up now? Have you looked up any of the gene deletions? Have the doctors spoken to you about them?
In one of our sit downs with the doctors they told us that if you are going to have brain cancer, this is the one you want (very bitter sweet, and still makes my stomach turn to repeat, but it’s true) This is grade II, slow growing. Every experience is different, but our experience has been positive so far, and this is with only partial removal.
Please keep posting, keep in touch… seems we are on the same path.
May I ask where you are located?

Ashley

stew4645
Posts: 3
Joined: Jan 2012

Hey Ashley! First off I'm located in Mobile, AL. My doctors do believe they were able to rmove all of the tumor, although they are still very cautious (which is understandable). As far as follow ups I'll have to go at least once a month for the forseeable future. The next being on Feb. 9th. At that time I should find out the other pathologist opinions. My neuro did talk a little about gene deletions, but at the time I was still a little overwhelmed and we really didn't go over too much. This next appointment is going to be much more informative. They really wanted to have all of the pathology reports before they told me their complete plan of attack. My last visit I just met all of my doctors I would be dealing with. Then it was "in the worst case scenario, we will do this" kind of visit.

The headaches that I was having were unlike any I has ever had. Extremely painful, but that was caused by the tumor pushing against the brain causing bleeding. I, like your boyfriend, got lucky as well. The ER dr. ran a precautionary CT Scan (which she said she didn't do all the time) then found my tumor. They operated 2 days later and removed it. It has been 3 weeks and I'm already back to work and in the gym. The return to the normality has made this easier, no doubt.

I will definitely keep posting. May I also ask where you are located? It helps to hear the stories of others, especially now one much similar to mine. Please do keep me updated on your boyfriend's progress, as well. Keep that positive fighting attitude! Hope to hear from you again soon. Take Care!

Scottdoh
Posts: 2
Joined: Jan 2012

My name is Scott I was diagnosed with a brain tumor in fall on 1998 it was a cancerous oligoastrocytoma grade 2 my only warning was a grand mall seizure in my sleep and I had waken up with blood on my shirt. At the time I was only 23 so I didn't have a clue that anything was wrong. I went to work like normal that night with a really bad headache but thought nothing of it. The next day I decided to go in and have it checked out and with the cat scan and then the follow up MRI they reveled a Brain Tumor. I was hopitalized immediately with the doctors deciding what to do. They performed the sergury and took out the tumor. I was told that if this same thing would have happened 10 years earlier there would have been nothing they could do. As it was there was no known Chemo's or Radiation at the time of surgery. I was also told that it was a grade 2 cancer that took about 5 years to grow about the size of a golf ball. If it was to return it would be about 5 more years. Fast forward 1 1/2 years later at my job I was interviewing a person for a potential job when all of a sudden I had this strong sensation of being electrocuted witch came and gone when I was interviewing him I didn't want to lead on that anything was wrong so I just continued interviewing him and talking. Then It came back so strong I knew something was wrong but I didn't know what. Next thing I knew I woke up in the emergency room. I had collapsed and had went into a comma then was rushed to the ER. Here we go again. The ER staff asked me, "Scott" do you know where you are right now? I looked up at all the equipment and said yes I'm in the ER again. Not 5 years later but only 1 1/2 years later. Well this time they wanted to be a little more aggressive and they started out by putting a grid in my head to see what areas of the brain the tumor was affecting. When they pressed button 1 and 2 it had affected both my throat mouth and tongue. So they knew they were not going to be able to operate in those areas. they contemplated having me awake for the surgery or being put out and both times they decided to put me out. Again I had the procedure done to remove the tumor and they had successfully removed 90-95 percent of it. This time it was the size a golf ball but it was reported that it still was a grade 2 it had not changed. Prior to this the MRI revealed that there was NO Tumor what so ever, so that proves that you can't always go by the MRI scan it never showed up even though it was still there, Scar tissue from the previous surgery might have covered up that area and that is the reason why they could not see it, maybe. But this time there was a radiation that they tried in me and it went ok. But still no known chemo treatments except for some experimental ones.
Well now what! it's been almost 12 years and I've been cancer free. I continue to have my followup MRI's yearly if not sooner. But after my Radiation treatments after the second surgery I noticed a few changes around me. I was very sensitive to the sun, I had very bad headaches, migraines, dizzy spells, and other complications. Because I was out of work so long with the surgery and Radiation I had lost my job. So I had started over at a retail store but it was very tough for awhile I was still healing from the second surgery, the first surgery went fast and I healed up to 100 percent in 5-6 Weeks the second surgery was not the same 12 years later I'm still not the same I still have random seizers, headaches, spasms on my left side, Etc. I've been on many different medications to help control the different problems. I always tell people to be fully honest with your doctors and even if they look at you funny when you describing something just ignore them and continue on. I live in Rochester Minnesota land of the world famous Mayo Clinic and even though they are not perfect "who is" they come pretty close. I have a great understanding doctor by the name of DR Jeffery Brittan he is my second doctor to tackle all of these problems. the important thing to remember is have your doctors bump their heads and really think about what they want to do unless its an emergency then you have no choice. Use the internet as a helpful resource to find out more about what kind of cancer you have, what treatments have worked in the paste even if you have to get a second opinion. At the time this happened 6 months later I had known someone with the same exact tumor the only difference was that it was in a spot that they could not operate. But with the advancements in the medical field there hopefully will be more options in the future.

I hope anyone that has this terrible Tumor/decease will see this and realize that with the right treatments you can live a somewhat normal life. I'm living proof that even though you get this decease twice I'm to stubborn to let it get the best of me. If radiation is an option for you I would do it, there are some side affects but instead of potentially having repeated surgery's radiation might help.

Sincerely,

Scott D

websterbr's picture
websterbr
Posts: 20
Joined: Oct 2011

Hi Stewart,
Thank you so much for posting your experince. I was having extremely painful migraines lasting 4-5 weeks at a time which sparked the investigation. I had surgery in September and they diagnosed an oligo grade II. I am still waiting for the pathology reports for the gene deletion. My oncologist told me that radiation is usually reserved as a last resort since it can only be used in one round. He said that chemo would be the next step if necessary. I am being followed closely. They say the removed all that they can see but also stressed that they can never remove it all. I am 26 years old and this was a huge slap in the face for me and my family. You can't take medication to help heal or prevent this disease as you can with other diseases such has heart disease. The definitions and catigorizations are confusing. I just think of it as whatever it is, it is not cureable and COULD be something that I have to deal with again but I am going to enojy myself and try not to dwell on it. I have become a "Yes Man"-inspiring movie. I came to realize that you will never know all of the answers because they simply cannot guarantee anything. I know a family that was told that their 2 year old daughter has 3 months to live because of an inoperable brain tumor. 2 year olds live in the moment and don't have much concept of time. She is going on 6 months since diagnosis and declining but still smiles. She has inspired me to live in the moment everyday. Everyone should regardless of having a disease but we don't realize it until we are faced with something like this. I am struggling to get back to normal cognitively since surgery but everyone tells me it will take time and I have been through so much in a short period of time, what do you expect?

I am interested in keeping in tough. Please continue to post you updates.

Brandy

Laker
Posts: 2
Joined: Jan 2012

Hello my oligo friends, my story is similar and different in ways. I was misdiagnosed six years ago as having a small TIA. It all started when I had an attack at home, I was sent to the hospital and then sent home that same night because they said nothing was wrong with me. I then went to my Dr. and went through a bunch of tests and they found out that I had a small hole in my heart. So I went ahead and repaired it, problem solved right, WRONG! In the six years that proceeded I had these small attacks that would vary in degrees of intensity. When I would have these attacks I would get really dizzy and light headed and my right side, right leg would stiffen up and I would have to sit down or pull my car over until the attack would subside. These attacks would last about a minute or so. I would tell my DR.'s about these attacks and all they could tell me is that these attacks were lingering effects of the TIA and they may never go away and that it may be damage that the small stroke had done. My question was why have they lasted so long, wouldn't my brain rebound, I was only 32 at the time and in my opinion still a young man. I asked my doctor for an MRI or a CT scan and they refused and told me that there was no reason for it. All they did was put me on cholesterol meds because they thought that my cholesterol was to high and that is what caused the stroke. Well let us fast forward to 6 years and here I am about to go to bed and I have a grand maul seizure, my wife calls 911 and once again I take an ambulance ride to the hospital. But this time it was very different, I had five seizures that night. I spent a week in the hospital 5 days of which I do not remember. I was awake during those 5 days. My wife told me that during those 5 days I went into kidney failure and I had to be given 1 round of dialysis and at one point they did not know what was wrong with me and thought that maybe I wasn't going to make it. I was awake during these days but can't remember, I had family and friends come visit me and I have no recollection of any of it. Well I pulled through and when they finally let me out of the hospital I was to weak to walk, so I had to use a walker for about a month. About a week after getting out of the hostpital I had an MRI, CT scan, biopsy done and I got confirmation of what was really going on. It is a stage II Oligodendroglioma, what we also found out from the biopsy was that my tumor is on my corpus callosum and leans more to the left of my brain, that is why my right side stiffens up when I have my seizures. If my old Dr.'s would have bothered to do a couple more scans that I had requested they may have found the tumor, idiots. My tumor is about 4 cm in width and about 2 inches in length, I think. I do have the gene deletion so my tumor will react well to treatment. Brandy, I hope that yours also comes back with the deletion, sending good thoughts your way. I have been on chemo for about 7-8 months I think, I tend to lose count. I don't know about you guys but my memory is not what it used to be. I don't know if it will come back like it was or not. The chemo that I am on is Temodar. I am on it for 5 days, I then get a 3 week break then back to 5 days again and 3 weeks off. This will continue for about 2 years they say. They also gave me the option of doing radiation but like Brandy mentioned you can only do the radiation one time and have it be affective. So since this tumor is going to be with me my whole life and believe me it took me a while to accept that, my wife and I decided to save the radiation for a later date in the future. We didn't want to waste the radiation right away and we thought that maybe we could buy some time and hopefully technology and the Dr.'s in cancer land can find us a cure! UCLA Medical Center is treating me, I switched my insurance to get my treatment there, I pay a little more but I think it's worth it considering what my old Dr.'s response was to some of my requests. The Dr.'s at UCLA told me that all these attacks that I was experiencing the last six years were not after effects of a stroke, they were small seizures that were building up to the grand maul that finally sent me to the hospital. They also told me that I did not have a small stroke (TIA) like my old Dr.'s had told me, what I had was a seizure and they all missed it. The Dr.’s at UCLA say that the tumor is a slow grower so the chemo will hopefully shrink it slowly. At my last appointment last month we finally saw a tiny, tiny, tiny bit of shrinking in my tumor. I mean I am talking so small that we had to look at the MRI scan a bunch of times to make sure that our eyes were not playing tricks on us. To be honest I could not see any shrinkage, but the Dr.'s say that there is, I'll take these Dr.'s word on it. So through all of this life changing experience I have finally began to feel what I would call a little normal. I am back at work, 2 months ago I became a new father, thankfully my wife became pregnant before all of this happened. But I can't help from getting depressed every now and then. I keep thinking about stuff. I can't help it; a million things go through my mind. I keep thinking why me right. Thanks to you all for your posts. I can't tell you how much it helps to talk to someone who is going through the same bs as me. Or to just read about it. May we all survive this evil desease!!

connsteele
Posts: 232
Joined: May 2011

You sure have been through it. The longer I have been in this, the more I realize that I need to trust my "gut feelings", that they are more right-on then the opinions of some doctors who don't know my son from Adam.

I also think you are fortunate in that you don't need radiation. Our son had his first brain tumor at age 8, and had whole brain radiation for a medulloblastoma. As a result, he has had to deal with many long term effects, including hypopituitarism, diabetes, mild learning disability, and growth hormone deficiency. But he did go on to beat it, live an independent life. Fast forward 26 years, and he develops a second primary brain cancer, this time anaplastic astrocytoma, which we've been told is caused by the radiation he had when he was 8. But what could we have done? If he hadn't had it, then he wouldn't have survived this long (or so we're told.)
All the best to you and so glad they've finally correctly diagnosed your tumor. And congratulations on being a new dad.
Connie
m/o David, age 34, dx medullo 6/1985; AA3 4/2011

mermaid678
Posts: 10
Joined: Dec 2011

Hi Stuart my name is Susan, i'm glad to hear you got your tumor removed that is great news. my boyfriend is 23 and was diagnosed right before x-mas with grade 2 oligodendroglioma. His tumor is the size of an orange and on top of his thalamus so unfortunatly they cant remove it. Right now we just have to go and get MRI's every 3 months to monitor the growth. It is about to close up his third ventricle and he will then put a shunt in the ventricle so the CSF fluid can drain into his stomach. They said they want to put off chemo and radiation as long as possible because radiation is a 1 shot deal i guess. Its tough just having to wait.. But from what your story sounds like i would go ahead with the treatments so there is no reoccurance. Good luck to you

Laker
Posts: 2
Joined: Jan 2012

Hello Susan, Have you guys gotten a second opinion yet? The reason that I ask is because the first nuero-surgeon that I saw said the same thing to me. He had a wait and see approach as well, but what he did was give me a referral to UCLA Medical Center for a second opinion. When I got to UCLA they reveiwed my case and sent my case to their Tumor board that meets once a week. When we got the results back from the tumor board we had many more options to choose from. Instead of a wait and see approach we had the option of chemo, radiation, or to just wait and see. The Dr.'s gave us their opinion and then my wife and I made our decision, which was 2 years of chemo. Surgery is not an option for me because of the location and size of my tumor. Also, try and get your treatment at a teaching hostpital, they usually have the best resources at those hospitals. Thought maybe this would help you, good luck, and stay positive.

falcon69
Posts: 25
Joined: Feb 2012

Hi Stewart,
My son Scott, 31 years old had an 80%+ resection of an oligodendroglioma grade II in the right frontal lobe on 12/23/11. He came through the surgery well, with no deficits whatsoever. His tumor was found to have the favorable 1p 19q deletions, for which we are very thankful. He also had bone graft surgery to replace the humeral head of his shoulder 2 weeks to the day after his craniotomy. He had fallen during an unwitnessed seizure before the tumor was dx and suffered a severely displaced/broken shoulder. He has been doing PT to rehab the shoulder and will continue with that for the next several weeks. He feels great now and one would never know what he has been through. He is very anxious to get back to work and probably would have been back a few weeks ago but was delayed due to the shoulder surgery. Also due to the shoulder surgery and subsequent recovery, we just met with the med oncologist and radiation oncologist within the last 2 weeks. Since this is a very slow growing tumor they are of the opinion to monitor the residual tumor with MRI's every 3 months and use further treatment....chemo and/or radiation... when the tumor shows regrowth, which they said could be 6-10 years. The docs did not give a survival timeline but did indicate that it could be in the decades for this type of tumor, taking into account my son's age along with the type, grade and the favorable genetic make up (the 1p19q co-deletions) of the tumor. They told us that while treating now might make for a longer progression free time period it would make no difference in the overall survival rate. Scott's drs also told us that there is much debate in the medical community over the treatment of this type of tumor. Our son is being treated at the Siteman Cancer Center at Barnes Jewish Hospital, Washington University in St. Louis. We feel very fortunate to have a major teaching/research facility and some of the best doctors in the nation 40 minutes from our home.

Since my son's journey is so similar to yours I just had to share this with you.

Blessings and prayers,
Julie

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