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Grade II Oligodenroglimas Bengin or Malignant

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

I am a 26-year-old female running on very little sleep and concentration so I apologize for any typos in this. I was diagnosed this grade II oligodendroglima this past spring because of sudden severe migraines lasting 4 to 5 weeks. An MRI was found which showed the tumor as an incidentaly finding. I had it resected one September 8. Now that I am getting back to a normal routine, I still find I get fatigued. I have problems remembering details of events or plans that are made. I have a really hard time concentrating and spelling which was never an issue. The other day I couldn'tm figure out how to turn my cell phone on! I have difficulty comprehending things and I stumble over my words. My GP told me that these symptoms are due to the actual craniotomy because all of the nerve endings have been cut. She told me to "retrain my brain" by doing repeatative things like writing the alphabet down 10 times and then doing it backwards, 5 grade crossword puzzles and gradually work up the level of difficulty. Playing solitare is supposed to help as well as listening to classical music specifically Mozart because of the repetotiveness. GP told me that it will take time to get it all back. I am a medical secretary so these task are extremely important. I am still not allowed to drive.

When my surgeon called me at home with the results of my biospy the week after my surgery
He told me that he was sending me back to the cancer centre just to follow even though ot was begnin and he thinks he got all of what he could see. I when back to the cancer centre this past Wednesday and they told me that it is malignant! It should take a long long time to retun and that they were doing testing to see if I had the presence of specific hormones.

Begnin vs Malignant in grade II oligodendrogliomas?

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

Websterbr,

I'm sorry to hear about your diagnosis. I have a grade 3 Oligo. I think the confusion over benign versus malignant happens often. Primary brain tumors very rarely spread to other parts of the body, so they technically aren't "malignant". Oligodendrogliomas are typically very slow growing (especially grade II). My N/O explained to me that they can kill all of the "daughter cells" through surgery/chemo and radiation, but they haven't found a way to kill the "stem cells" which is why it is likely to return someday. My N/O told me she has patients that were diagnosed 20 years ago with this and it hasn't recurred yet.

The testing you mentioned is probably for some gene deletions. If your cancer cells have deletion of genes at 1p and/or 19q it means that the tumor is much more responsive to chemotherapy and likely to progress much slower. Also some doctors test for a mutation of Idh1. If you have that mutation it improves your prognosis.

In many cases of grade II they don't do chemo or radiation if they get a total resection.

My N/O told me that because I had a total resection, had all of the favorable genetics, and was in good health that I should expect a long life. She said we would watch it carefully and if it returned we would treat it and "reset the clock" on it again. She also said that research is getting closer to undertanding how to target the "stem cells" and that a cure for this could be on the horizon.

I'm 4 months out from surgery and while I still have some difficulty with using my right hand, my brain is still learning and I see improvement every day.

I hope your additional tests come back favorable and that you continue to improve. My advice is to keep a positive outlook. This is a terrifying disease, but having a good outlook can help you beat it.

Dave

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

Hi Luvs2run,

I am confused and angry. I originally understood that Grade II's were benign and grade III were more considered malignant being anaplastic. Cancer was not used as often because it refers to the spread to other organs. I am not upset with you by anymeans and I thank you greatly for replying. I am angry at the radiologis that I saw at the cancer centre. He was very short and did not seem to want to take the time to answer my qustions and explain things and just said, "yup it was definately malignant" this after telling me that everything was fine and then he left the room in a rush. This left my family and I sitting there worried and confused. I will see my surgeon next week and I am coming fully loaded and I'm going to hit he with questions and demand some clear answers. He was the one in the first place who said it was bengin. I tend to lead towards him right now after the way we were treated at the cancer centre and upon further research. MY father as a friend who has gone 25 years without a recurrence. It is all so positive. Is it wrong to feel negative and worry that that sounds great but lets not be niave? MY father looks to any little thing for positivity and then that is it, that is the right thing (which in this case would be great) however he is then absolutely crushed when he finds out otherwise. Even on the day of my surgery he was say oh it is nothing it will just be a mass. I told him that a mass is a lesion and they are telling me that a lesion in my case is a tumor. I don't think they would or I would let them cut my head open if there were not 99% sure it was a tumor. Everyone deals with things differently. I want to know the facts, face them and then get on with it. It is hard to face the facts when I am getting conflicting stories from doctors and I am left feeling negative. Even in the very beginning when my nerologist said it was just swelling I have a feeling deep in me that something was actually wrong. Turns out I was right. I saw the reports and he was just masking the diagnosis. Even when I decided to have the surgery I still felt like this was not it, there was more to come. I can't shake that feeling. Maybe it is just the factor of no knowing. Either way I feel stupid for being upset, worried, depressed,looking down then tunnel and not seeing a light.

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

I am so sorry to hear about your diagnosis. Low grade or not, this news has a way of shaking your entire world.

I myself have not been diagnosed with this cancer, but my boyfriend has. Exact same as yours. Grade II Oligodendroglioma. His is located in the Parietal Lobe and has had surgery already as well. He is 29.

We were never told this cancer is not Malignant, but we were informed it is very slow growing. The doctor actually said “if you are going to have brain cancer, this is the one you want”. Strange thing to say, but it has stuck with me and actually brought me some comfort.

My boyfriend tumor was not completely removed, there was a portion that they are unable to touch due to location. They called it the “main highway” in the brain. Used to communicate with each side. Even radiation will be touchy in this area, should it get to that point.

He as well had blood work and different test done for genetic testing. His came back with none of the gene deletions we had hoped for. This makes his cancer less responsive to chemotherapy, so when the time comes, radiation will most likely be our rout. A bit of a let-down yes, but, we are still lucky. He is still here.

From all the questions I asked in every appointment we’ve had. This is what I have gathered from the doctors. I’m not sure this will be of any help, but I will explain my boyfriend’s cancer the way it was explained to me, when I asked to be spoken to basically like a five year old so I could completely understand. Maybe that’s why he used the term “this is the cancer to have” and “main highway” but it does help!

This is a malignant cancer yes, but it is contained almost always to the brain. One other thing, it is rare for this if and when it occurs, for it to pop up in other areas of your brain, it usually occurs in the same place it was removed from. Not to say it can’t, just saying it is rare. We were told that worst case scenario, and this was very rare as well, it can spread to the spine. They made that seem VERY rare though. If you think, grade 2 and slow growing, it almost sounds impossible. Especially with being watched carefully with MRI’s.

You will regain your strength soon and see that life is still full of opportunities for you. My boyfriend Is back at work and doing his normal daily things as he was before, this time headache free! You would never know the things he has gone through, accept for the scar he now carries on the back of his head. Be strong and know there are others just like you all around you! Reach out and many will reach back. You are not stupid! You are allowed to be upset and worried, this is a time where you are searching for your NEW NORMAL! It will come! There is light all around you here on these discussion boards.

Should you ever need to know more, I’m more than willing to share all I can! Email, telephone, I’m here, as it seem you are very much in the same situation as my boyfriend.

Thinking of you today and from this day forward. Write down you questions! Get mad if you don’t think they are being answered! Push for what you want to know. No question is stupid and no list long enough. You do what you feel is right!

Can I ask if they are taking the “wait and see” approach with you now? How do you feel about it? Has it been explained to you?

Kind Wishes,

Ashley

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

Hi Ashley,

Thank you for your reply. Our situations do sound quite similar. Mine was on the right frontal lobe and the neuro-radiologist said the same thing "As far as brain tumors go this is the best one to have." My first thought was "are you kidding me?" No tumor at all would be much nicer, but I guess beggers can't be choosers. I was originally told to take the watch and wait approach and I wasn't told of the pros and cons of anything else. I only got to a surgeon because I asked about becoming pregnant. I am so happy I did because the surgeon was very down to earth and taught me more than the neuro-radiologist and oncologist did! My thinking was that why would you want to leave something in your body that you know progresses and kills you. If you had skin cancer, you would remove it. I was lucky in that my tumor was in a low risk spot for removal and that I had one of the best surgeons in Canada. I work in the medical world I had quite a few physicians tell me he is one of the best. My aunt had a cerebral aneurysm clipped and shegave me the best advice going into surgery. "Believe in your surgeon". I have a follow up MRI scheduled for December 19 and then see the neuro-oncologist on the 21. At this time I belive the watch and wait approach is the plan depending on the MRI and results of the tests.

When people tell me that it could be a lot worse, I agree completely but what I am dealing with is that life was great a year ago. My husband and I had just moved into a big house with three bedrooms closer to family and friends. We were planning on starting a family this year or next. I know that we still can now that this tumor has been removed but we talked about it and I don't want to be doing more treatments while I have young ones. I wouldn't want to miss out on the important stages or leave my husband to take care of me and our children. They say it can take years to come back. I have been the acception to many medical rules and guildlines in life. I am the "unusual case" as my GP has put it. We decided that we would travel more and have things in life that we otherwise would not have if we had a family. This huge change is what is bothering me. We have had some heartache in our life recently and it seemed that we were on the up and up and we have now been thrown another curve ball. It is like someone, somewhere, is trying to tell us to slow down. I was so eager to get back to work and back to life as I knew it and my GP told me to take it easy and enjoy some time off so that is the plan.

Thanks for you reply. I can really identify with your story.

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

Hello Again,

I know exactly what you mean when thinking “No tumor at all would be much nicer” but unfortunately these are the cards dealt. If this is the lesser of two evils, take it, right?

Interesting that they were wanting to take the “wait and see” approach even before surgery. That is something I have not heard yet. Glad you got to see a surgeon and he explained things better. It’s always a relief, even when it isn’t the news you want to hear, but yet a relief to finally have someone who takes the time to make you understand. This is very important.

My boyfriend was in for surgery not even a month after being diagnosed. He came out of surgery great, everything working the way it should and was back at work 3 weeks later. We had our first appointment after all genetic tests were done to discuss what they would like to do from this point on. We were told they would like to take the wait and see approach, this did not sit well with us at first, just in the way it was explained to us. I to could not understand why they would just leave something that can progress. Why would they go through the work of surgery, leave part of it behind and then do nothing at all? It was very frustrating. The second opinion we received last week helped me understand it more. Due to the location and due to the fact that it’s grade II, we hopefully need not worry about it progressing quickly or recurrence for years. He explained that the tumor can do three things.1. nothing 2.grow rapidly or 3. Grow slowly as grade II does. He explained a survey they did years ago. They took 350 people and at the flip of a coin basically half went for treatment right away after surgery and half took the wait and see approach. Because radiation is usually only given once except for rare situations, the ones that received treatment in no way showed a longer life expectancy than those who took the wait and see approach. Every tumor is different, every person is different and every case is unique. Jordan is healthy and living life to the fullest now maybe even better than before… he no longer has headaches. If the tumor is just going to stay still and not progress for years, why make him sick with treatment now. So, the only care we are taking at this point is follow up MRI’s every 6 months. Next one will be January 9th. Fingers crossed that everything has stayed the same. Should it return or stem from the spot left, radiation will be his route and we will deal with everything that comes with that, when that day comes.

Every situation in anyone’s lives, anyone’s diagnosis big or small, could always be worse. Sometimes that phrase is used in lack of knowing what else to say. Hard to hear but understood I guess.

I identify with your struggle in what to do family wise now. My boyfriend does not have children either, his first initial thought in all this was “we need to have a child” but in time and after long hard discussions, we have decided it might not be best for us. It’s a heart breaking decision to come to, but spoiling yourself in traveling and doing things prior to all of this you may have never figured you’d do is an amazing choice! So many hard decisions that need to be made in all of this, so many future plans that need to be changed, it’s all a shock and hard to take in. I’m glad to see your writing and expressing your feelings, this is something my boyfriend has been unable to do really. He has taken more of a denial approach. I hope that passes soon.

You and your family are in my thoughts and prayers. Please keep me updated as you go along! I am happy to have found your story on here and look forward to speaking with you!

Ashley

plhamby
Posts: 7
Joined: Oct 2011

I would find another Dr. There is no excuse for a radiologist to act like that. My sister was diag. with grade 11 in 1998. Her tumor is inoperable. She had her first chemo in 2008.( Temadar ) Afterwards, the Dr. told her there was nothing else he could do for her, so I brought her to Tx where I live. She goes to MD Anderson in Houston. Check out their web site. They have a would of info. including gene therapy and clenical trials. They are great to patients and family. They will also help you financially. My sister has had a lot of success with speach therapy Find a GREAT Dr. and keep your chin up. My thoughts and prayers are with you.
Paula

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello...

My son is battling a grade three (anaplastic) oligodendroglioma. My understanding of the terms "malignant" and "benign" are that brain tumors aren't usually considered malignant or benign. They are given grades instead....grades one and two being considered "low grade gliomas" and grades three and four considered "high grade gliomas." When our NO refers to the higher grades, he calls them "aggressive tumors" rather than "malignant tumors."

About your memory and spelling issues....you are not that far out from surgery. It does take time to heal. I had a nurse tell me that it could take up to a year for my son to completely heal. He also had some memory issues and they did improve considerably as time went on. He had really bad headaches for almost a year after the surgery and those also went away very gradually.

We also had several different sources tell us that your brain can learn new ways to transmit messages across the dendrites or neurons or whatever.....I forget the technical stuff.....they told him that he should fold his arms opposite to the way he usually did, put his pants on with the opposite leg first, brush his teeth, comb his hair, shave etc. with his opposite hand, those kinds of things. Also memorize stuff....it would be a way to exercise his brain and promote memory and the ability to stay focused. We think that it did really help.

You mentioned that you were getting very little sleep. Being chronically tired and stressed really impacts your ability to remember things and concentrate. I know that it's almost impossibly hard, but as much as you are able to, please try to get rest and sleep and allow yourself some down time so you can totally recover and heal.

Please if you can, please continue to post on this site and keep us updated. I really care about everyone on this site who is battling so hard, and also everyone who is supporting those in the battle. I will be thinking of you and keeping you in my prayers.

Love, blessings, and peace to you,
Cindy in Salem, OR

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I know it is an horrifying shock to hear that you have brain cancer. Cindy is right: there are no benign or malignant, just grades, 1,2,3,4
Children usually get grade 1, and often it is completely curable. Grade 2, are low grades. And between astrocytoma 2 and oligo 2, oligo have a much better prognosis. You have a good chance of living a full life with no reccurence for 20 year. In 20 years, medicine would have made so much progress, with the gene therapy and stem cell research. If the tumor ever grows back, you will have plenty of choices for treatment.

I know that you feel angry, despair, sadness, confused etc.. But maybe you can see hope. Of all the pathology reports you could have gotten, an oligo 2 is the best case scenario. As crazy as it sounds, I envy your diagnosis. My sister has a grade 3 astrocytoma.

J.

sadinholland
Posts: 238
Joined: Apr 2011

This is different than what we have been told. We have always been told the grade III anaplastic olio is cancer.

Petershelper
Posts: 1
Joined: Feb 2013

Hello all,

I had awake Craniotomy on 30 Nov 2012 - An interesting experience: It seems what is left has the correct part that respond OK to Chemo, which I am currently on: Still unsure of going out by myself for fear of Epilepsy event which they initially found a tumour on during November 2001.

I have always had the report 'BENIGN' back after an MRI scan until last year when some different activity was detected.

My main hassle now, along with my wife's is getting travel insurance for holidays! The majority of companies only ask the question,

Is it BENIGN or MALIGNANT; There is no mention of cell types or what grade it is!!

 

The latest quote was £800 ($1252) to go to Italy from the UK.

 

Catch y'all again,

George

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