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Grade 2 Actrocytoma Survivor

ing0926
Posts: 1
Joined: Feb 2013

Hi - I am a 23 year survivor of a grade 2 astrocytoma - dr. still trying to get me to do MRIs every 5 years.  Any input as to if this would be necessary??!!  God bless you who are battling.

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JJ1209
Posts: 1
Joined: Feb 2013

I'm a grade 2 Astrocytomia survivor. My left cerebral cortex. I had surgery to remove it I little over three years ago. I've had to have mri's every four months then the last two were five months. I'm now at six months and soon going in again. I have been told that I will be having them the rest of my life. It doesn't mean that your cancer will return as The Lord can heal us but it is best to be tested so in case it does return it can be removed before it grows or therapy planned if unremovable. Not to be negative but a malignant tumor can also show up again in another part of the brain or spine. From all I have read and people I have spoke with you are a very blessed man. They tend to return and with a vegence so thats why those prayers, positive attitude, faith, and the belief that you are healed are a journey to be on. I battle everyday trying to keep it positive as I have some other health issues besides the side effects of the tumor. It can take many years to heal physically and emotionally and in most cases you just don't magically be who you once were. Despite my battles I happen to appreciate those small things in life so many take for granted. Typical of us survivors. Personally I have cognative issues and my senses have been altered as far as smell and taste. They go back and forth. So when my taste is there I tend to over eat and enjoy :) I have times when exhaustion hits and normally nap daily. I've been told that is normal too. I also have been told I will be on medication the rest of my life as my neurologist educated me on the dangers of grand mal seizures. I haven't had that happen in a few years after medication changes until the right combo worked. I'm not you and your choices what you do but given the reccomendation by the physician I do as they suggest. I'm blessed to have had a wonderful surgeon and team working with me. God bless you :) Your a survivor and made my day!!  

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DustinD
Posts: 2
Joined: Apr 2013

I'v passed the 1-year anniversary of the seizure and diagnosis (May 23rd) and the craniotomy tumors removal (June 4th). The post-surgery recovery was challenging due to the requirement of me having to re-train the right side of my body in rehab. I've had MRIs conducted every 3 months since the surgery. The most challenging part of all of this is the unpredictable future. I know that all of my future is partially unpredictable, but do you have anything to share from your experience that can help me know what may be coming?

The most disturbing part of all of this is that I am still in the process of dealing with the loss of my father to brain cancer (Astrocytoma  Grade IV). Of course, I am scared by the cancer taking him, but I am also encouraged by the fact that he survived six years even though we were told he would survive only a matter of months. Fast forward three years later, and I discover I am I on the path to my father's condition. How long and in what manner? No one can even let me know the possibilities of my future.

mccindy
Posts: 82
Joined: Jun 2013

Hi Dustin,

There really is no way to determine whether your tumor will upgrade to a higher level.  Some do, some don't.  How much of your tumor was removed?  The more tumor that is removed, the longer it can take to grow back (if it ever does - not all of them do).  Docs are hesitant to give prognosis in years anymore because n one really knows how long any tumor patient has.  There are always new treatments coming on the market and every single patient's story is different.  Stay positive and keep on fighting!

DustinD's picture
DustinD
Posts: 2
Joined: Apr 2013

Hi mccindy,

I know that it's foolish to ask for predictions of the future. Researching brain cancer has shown me that predicting the outcome of the diagnosis is as easy as predicting lottery drawings. The neurosurgeon removed the tumors, but reminded me that removing the tumor does not remove all of the cancer cells. He felt that the craniotomy went very well. After the surgery I had MRI scans every three months for a year. I have now progressed to a four-month break until my next one. My oncologist has said that things look good, but that he wants to keep the scans regular in order to see it as soon as a return is present. He has told me that it could be five months or twenty years. He feels that I will need to keep looking for it, rather than letting it sneak up on me. He hasn't been pessimistic or optimistic about my future. He just wants me not to ignore it just in order to avoid MRI scans, as some of his patients have.

I apologize for the late response. I don't know how to keep notified of posts from this site. I, usually, only return to this site late at night when I have randomly regressed to fear of the potential future. I'm young. I'm 33. I need to not let it cross my mind, but dealing with my father's final days has left a bit of a scar. And that was before I discovered that I may have to deal with those days again, but on the other side; or not. I just have to focus on the "or not." Thank you so very much for your support! Happy Holidays!

mccindy
Posts: 82
Joined: Jun 2013

Easier said than done, I know.  The best thing I've found is to try to just enjoy life between scans.  Scan time is always going to be scary and stressful.  But at least once you have one, you know you're good until the next one.  Avoiding them just makes people more stressed, I think, because now they don't know what's going on in there.  Your oncologist sounds very much like mine - she's refused to give me a number, because it's just so unknown.  I'm young as well - 41 - and find this diagnosis has scared the beans out of most of my family.  Hopefully it will take years for both of our tumors to grow back, and who knows?  Maybe by the time they do come back, there will be new treatment that will save us both.  We just never know, the best thing to do is just to stay positive, and enjoy life.

 

Have a wonderful Holiday season!

Maybel1980
Posts: 5
Joined: Dec 2013

Hey,

It's not fun but it's always better to keep track and make sure that it's under control all the time and nothing changes. I hate to say it but my partner's tomur changed from grade 2 to 3 a few years ago and it's good that we found out in time.

So just do the tests... be on the safe side for your health.

holly rachelle
Posts: 3
Joined: Apr 2014

I am 22, and have a 2 yr old little boy Jordyn, he is my rock when I am weak, I don't know if I would still be alive if it wasn't for him! I was diagnosed with a brain tumor in August of 2010, four years later after so many tests and trials I had a biopsy done because I was having anywhere from 8-30 mini seizures on my left side a day. it was taking over my life and not making it possible to raise my son the way I knew I was capable of. I havent been able to get a job for over a year and a half now and social security has been pulling through a loop. this would be a true blessing in disguise. The Dr. said when they did the biopsy that they removed what was pushing against my skull and  causing my sezuires to become so intense. It was sent off to Pathology and came back as an Oligo Astrocytoma grade 2. It has taken over my whole right temporal lobe and is inoperable due to all the nerves it has taken over. I have been doing double therapy of radiation and chemo since March 11th. I finished radiation on April 7th, and have to do chemo for another 8 months. They wont be able to completely delete the tumor but get it down in size. The tumor will come back within 1 to 10 yrs and it will be a higher grade tumor and more aggressive. I am on my fourth different anticonvulsant and it luckily hasn't made them worse unlike the rest have done in the past. I am staying positive for not only my wellbeing but for my son ultimately

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