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Daughter diagnosed with AA III

StrongDad43
Posts: 4
Joined: Sep 2010

On August 23 my daughter was dx with AA 3 in San Antonio, Tx. We were at first told tumor was benign and shortly after biopsy we were told it was indeed malignant. Her only symptoms have been double vision in her left eye. That was the main reason why we initially took her to eye specialist. We are now at MD Anderson in Houston, and just been told that tumor is inoperable. Surgeon does not want to touch it, and doesn't recommend any to touch it either.

Today we were told she need to have surgery to make a"small hole" in one of the ventricles to allow fluid to drain. This surgery he says is in order to avoid having to do a shunt.

Oncologist tells us that he doesn't recommend chemo yet, only radiation. He tells us that even tho' San Antonio is saying is AA 3, to them at MD Anderson, it looks more like a 2-2.5.

I would like to know if anyone in here has ever had something similar or know someone with something similar....She is currently on steroids for swelling and her dosage just reduced.

Like I mentioned before, her only symptoms before the biopsy were just double vision. After the biopsy, her right leg and right elbow have hurt. Her tumor, they tell us, is in an area which is very critical to operate. They already told us that it will most likely never come out.

Any comments are greatly appreciated. She is 19 years old.

Daniel

Snoweerane
Posts: 10
Joined: May 2010

My prayers are with you, your daughter and your family. My daughter, too is diagnozed almost a year ago, Aug 27, 2009 with Ana Plastic Astrocytoma Grade III. She has been on radiation for 6 wks, chemo and steriods. When the medical facility give up on her in Alaska then I took her to Seattle, Wa. They refused to do surgery as the cancer cells may multiply, same goes for gamma knife procedure. Drs in Seattle recommended a high dosage of chemo in March, 2010. Her last two MRI's shows no change meaning that the cancer is not growing so it is recommended that she is on chemo for six more months with MRI's every 2 months. I've heard alot about MD Anderson so I think your daughter is in one of the best medical facilities. You are fortunate to be there. My daughter's only symptom was a severe headache. She was finally given an MRI when she started to vomit. That's when they found out. Its been a tough year as she has 3 children; 4, 8, 14. Ask your daughter's drs at MD Anderson the difference between AA 3 and 2-2-5. I will keep you all in prayers. I am rarely on here but will check sometime whenever I can. Take care, God bless you and your daughter.

StrongDad43
Posts: 4
Joined: Sep 2010

First of all. God bless your daughter and your whole family. From a family member's standpoint, I know how it feels. From your daughter's and my daughter's standpoint, I could never say "I know how you're feeling". I pray that she makes a full recovery. God bless you, again, and stay STRONG!!....Keep us posted on her treatments.

Danny

sue Siwek
Posts: 280
Joined: Jun 2009

you are in one of the best hospitals in the world trust them. been down this route 10 yrs ago with my husband. he is still alive. his was inoperable so he had radiation and stereotactic radiation followed by chemo. we chose henry ford hospital in detroit. they saved his life. life will not be perfect as i am sure they have informed you. we will begin our 11 yr. he has been cancer free for the last 5 yrs. you have no choice but to fight. so fight in one of the great hospitals i the usa. good luck.

StrongDad43
Posts: 4
Joined: Sep 2010

Thank God he is doing well!!.....I will keep you guys in our prayers and ask for a full recovery!!...keep us posted!

Danny

patriciam
Posts: 39
Joined: May 2009

Strong Dad,
Your story is familiar. My now 18 year old was diagnosed at 16. We took her to the eye doctor too, she said she had pressure in her eye. The eye doctor found nothing wrong with her. Then, she got hit on her head playing softball at school and began vomiting so we took her to ER. She had a brain tumor. Shocking news for all of us. They too, put a tube in her head to drain the fluid rather than put a shunt. It worked for her. The steriods she took made her eat a lot, she gained about 25 lbs from her surgery to after the radiation treatments and chemo pills. She now has lost most of that 25 lbs. Initially, the doctors told us it was a begign tumor, but it ended up being not. It was AA3. My daughter did have surgery though and the doctors were able to remove most if not all of the tumor. Now, after MRI's every three months, she is doing well. She is in college now but still does have fatigue. Her energy level never seemed to come up again. I am not familiar with other hospitals but I am sure you have a good doctor. If you are not sure, ask for a second opinion. God bless you and your family, keep the faith and hope and know that you are not alone.

StrongDad43
Posts: 4
Joined: Sep 2010

Thank you for all the information and words of encouragement. I'm sorry about your loved one going thru this. Thank God she is doing better and in my heart, I know eventually she, and my daughter, will make recoveries. I would like to ask you, if maybe one day your daughter would like to speak to my daughter about what she went thru. Just trying to make her feel better knowing that she is not alone.

Thanks,
Danny

patriciam
Posts: 39
Joined: May 2009

HI Danny,
Sure, I will ask my daughter about it. When she was first diagnosed, she didn't want to talk to anyone about it. All the teens seemed to be too young for her to relate to so she just didn't talk to anyone. It was one of the lowest times in her life. She is much better now, but it's still a nagging worry for her.
God bless, I hope your daughter is doing better.
patricia

rokaren5
Posts: 14
Joined: Aug 2010

Hi Daniel,
I am a strong proponent of 2nd opinions. You can have pathology slides, MRI's, and EEG reports sent to any hospital in the country. I love my "medical team" here in Columbus, OH. I'm in my 4th week of radiation & chemo. On steroids. AND I know I'm going to heal. My case is different. I didn't even call my seizures seizures because they were nothing more than a very mild "spaceout" (even happened while I was cutting a live tv show). I had a right temporal lobectomy and they took some white matter as well. My diagnosis is gliomatosis cerebri/level III astrocytoma. It's extremely rare, but I'm glad I had surgery (biopsy & resectioning).
I have had my pathology slides sent to Mayo & NY Presbertyrian. I'm also starting the ball rolling with Sloan Kettering in NY because I have heard they are "the best". They have tons of trials and doctors to match specific brain tumors. No one here in Columbus, OH has seen what I have. I love them. They are fluid and are going with the tumor. AND I'm going to find a doctor who has seen what I have.
Best of luck & healing to your daughter.
Karen

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