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Grade 2 Oglio; to operate or not to operate? and where?

formybrotherinlaw
Posts: 1
Joined: Jul 2012

My brother-in-law has recently been diagnosed with a grade 2 ogliodendroglioma. One neurosurgeon has said he should have an operation and that he could remove 80-90% of it and then do radiation and? chemo after. Another surgeon has said he would suggest not doing surgery but doing radiation or chemo (or at least he is leaning towards, but this opinion may change after the neuro oncology meeting next week. The reasoning both surgeons gave seemed to make sense, but we are a bit confused to say the least. We thought from what we have been reading that surgery was the standard first treatment for low grade gliomas. We have also heard and read people referring to the "wait and see" approach.
What is the current and best treatment approach for low grade gliomas?
We would appreciate hearing from anyone with specific experience with treatment of low grade gliomas. Also, where have you been treated and by what surgeons and neuro oncologists. We are presently in contact with NYU, Sloan Kettering, and John Hopkins.
Thank you.

Formybrotherinlaw

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Do the surgery, my son has OLI 3, they removed 99% of his tumor September 2011. He just finished his final chemo/radiation. Physicians accredit great surgery, aggressive treatment plan. Our treating
facilities were John Hopkin, Mayo and Roger Maris Cancer Center. John Hopkins conducted a genetic
molecular study, he has the 1p19q deletions, that determine the effectiveness of chemo and radiation on this type of tumor. Today, his is cancer free, and physcians predict no recurrance for 10,20 or even 30 years. He is healthy, suffered no effects from removal of tumor or from treatment plan. Back working, hanging with his friends and living life to the fullest.

I have read cases on this site were, the wait and see, are not doing so great, once that tumor starts to grow, more physical problems develop. Also, notice patients are having more disabilities from the surgery. This tumor has fingers that like to cross from one side of the brain to the other. Check for deletions, fine a great surgeon and a great treatment team, one you are totally comfortable with.

This site has many individuals, in various stages of treatment- reading their fight plan might
help with your decision.

Wishing you the best, and fight, fight, fight!

Carol

xmacar
Posts: 4
Joined: Jul 2012

We live in Brazil and last July my son was diagnosed with the same type of brain tumor your brother-in-law has and was given the same information you've received (he consulted with six doctors - three said operate, three said let's watch it). He finally opted for the surgeon he felt most confident with (wait and watch), Dr. Guilherme Ribas. After seeing some slight growth his surgeon suggested operating in France with a French doctor, Dr. Hughes Duffau, who specializes in awake surgery in the area of the brain where my son's tumor was located (insula). The surgery was performed in December 2011 and was very successful with 90% of the tumor removed. Recuperation was incredibly fast and my son is now leading a totally normal life, working full time and back to his prediagnose running and biking. He takes oral chemo (Temodar) for five days, then three weeks off with no side effects. You can read his blog at patrickmacedo20.blogspot.com. I wish you the best and please let me know if you have any questions that I could help you with.

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi I was diagnosed 11 years ago with Oli II in left frontal lobe after suffering 3 epileptic fits. It was right next to my motor function and my language centres. They operated 6 months later. I had no follow up treatment.Due to regrowth over the last, don't know how many years, I am now due another op. However, it is too dangerous to operate in the normal way but I have recently had some specialised MRI's to see if I am suitable for Awake Surgery. I am still waiting to hear from the Neurosurgeon. Due to the rarety of Oli gliomas, apparently 2% of all brain tumours, they is a limited amount of research for this condition. The Neurosurgeon told me that due to its unpredictability, they can only give options, not answers. He also said that every one is different-different ages, states of health, size of tumours and in different locations. In addition, it has now been generally accepted in the medical world that Oli II's will at one stage change to a grade III at some stage but no one knows when-it could be tomorrow or in 3, 4, 5 etc years time.
Personnaly I think that the more surgeons/people you talk to, the more confused you will be. Its a gamble for all parties. At the end of the day,no one know for sure the outcome of any treatment because there are too many variables.I will have the results in the next week or so as to whether the surgeon feels that surgery is possible. If he says it is, then I still have to make the decision as to whether I will go for it or not as alot of patients are not ready to undertake this type of surgery. I have my reasons for surgery and my reasons against surgery. I hope you can find some peace in choosing a course of treatment, with my very best wishes, Andrina

krismarie
Posts: 1
Joined: Oct 2012

I'm sure by now you have had to make a decision as to what you needed to do. I also have grade 2 oligodendrogliomas. I had the surgery and they couldn't get all of it out. I also had 33 radiation treatments. This was back in August, 2005. I have MRI's and PET scans and am on meds for seizures and migraines and headaches. I had two opinions, one saying wait and the other saying get the surgery. My children made the decision for me. Get the surgery. They wanted to be here to help me through it, rather in college and away. Thankfully I did. The tumor was larger than it appeared. Not a walnut size, but a lemon size.
Please do what is best for the family, your health is what matters most to them. Waiting is not getting anyone anywhere. Get the insurance, the funds, the surgeon who can do this and then trust it will be done to the best it can be. It is scary, but you will treasure the people you have with you as you journey here. Don't worry about statistics, they come and go...medicine changes every 3-5 years thank God! :) Bless you and your family, I will pray for you that it will work out. Be patient and go slowly in all things you do, you are so worth it!

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

I had a similar diagnosis.  My doctors at Columbia Presbyterian initially watched it.  They were monitoring it for a year and only operated when they had to.  I started to have seizures and they removed an enhancement in the tumour itself.  They then put me on Temodar.  They only wanted to use radiation if they had to.  These guys are of the mantra that less is more And there are surgeons who specialize in these tumors.  Also resection an oligo is never 100% successful because they will never get it all out.  

I did chemo at Sloan Kettering.  My doctor there is brilliant.  Hope this helps. 

All the best. 

anna.rhi
Posts: 3
Joined: Jan 2014

I was told I had a low grade glioma and was not aware if it was astro or oli At the time. My first surgeon said wait for changes and my 

second surgeon said remove it. I was not given an option for chemo or radiation therapy as it was discovered early.  But in surgery you have a higher chance of rremoving it all. I had a great recovery afterwards. This is my 6th week from surgery.  I feel better knowing it was taken then leaving it as low grade can and always does turn high grade given time. 

bpnormile's picture
bpnormile
Posts: 5
Joined: Mar 2013

Sorry to hear of your your brother-in-laws diagnosis.  I was diagnosed in October, 2012 with a Grade II tumor.   I live in Denver and honestly could not have asked for a better Neurosurgeon, Radiation Oncologist or Oncologist!  Mine was in the front right lobe and manifested itself in the form of a massive seizure one night while relaxing at home with my significant other.  I had sugrery to remove the tumor followed by Chemo and Radiation.  I would highly recommend going through with the surgery.  

I was treated here in the Denver area at the Medical Center of Aurora, my Neurosurgeon was one of the best Doctors I have every been around in my life.  He did such an amazing job that today it is hardly noticable that I even had a brain surgery.   He was also very caring and compassionate, but when it came time for something difficult to discuss he did not shy from it and was always completely honest with me and my family.  My neurosurgeon's name is Dr. Adam Smith, if I should ever have to hve surgery again I will only let him do it!  He works closely with the team from the Rocky Mountain Cancer Center and working with all of them I can tell you that by June, 2013 I got my first clear MRI and all have been that way since!

Best of luck and prayers to your family!

If I can answer any questions please feel free to reach out to me.

Brian

momplut
Posts: 1
Joined: Jul 2010

I am new.  I had a Grade II Oliogdendroglioma diagnosed in 6/2007 after years of misdiagnosis of MS, and Copaxone injections.  I had 2 surgeries in 2007, and 13 rounds of chemo.  It has been "stable ever since. I have bad headaches, memory loss, and other issues, but am very happy that it has remained stable.  Has any one else had this situation? Can I look forward to a longer "stable period? I am now 51 years old woman and will be 52 in September.

Thank You,

I pray for all on this site and your friends and family..

Marie in Pittsburgh Pa

gabolko
Posts: 4
Joined: Mar 2014

Hello there,

So just wanted to let you know that I had an oligodendroglioma grade 3 and chose not to operate, I am healing the tumor through diet, vitamins, lifestyle, chinese herbs and acupuncture.  I have been following Western Dr. David Pearlmutter, who wrote "The Grain Brain"  He has cured patients with serious brain illness including cancer through diet and vitamins alone.  I have also been keeping a blog of my journey of healing if you are interested in checking it out.  It is:

brainnewbeginning.blogspot.com

Any other questions feel free to email me at gabolko@gmail.com.  If you all did already decide to get surgery I understand, we must each follow what feels right for our own bodies.  But, I do have some ideas to help with a more speedy recovery, especially when it comes to the serious physical ailments and side effects of western procedure and medication.  Sending healing energy and support your way.

 

Gabrielle

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