Anyone Living with Residual Tumor?

[Vanessa]

Hello,

A few weeks ago I posted on this board for the first time regarding my son's possible tumor regrowth. He had surgery in January for a intramedullary ganglioglioma. At the time of the surgery the surgeon felt he removed the entire tumor. A post-op MRI (the day after surgery) showed a thin film of residual tumor, but we were also told it could have been something else, like dried blood. His 3 - month follow-up MRI in May, showed a 98% chance that the tumor had regrown (according to his surgeon and radiology). My son has no symptoms at all.

A few of you adviced me to contact Dr. Jallo for a second opinion. I send Dr. Jallo all the MRI's and this was his opinion:

"I did get the films and agree that there is residual tumor. I do not think it is regrowth but not well seen on the postoperative MRI scan. I agree to repeat another MRI scan in July as long as he does not have any neurological deficits."

His next MRI is next week, July 3rd, and we are anxiously awaiting that day to know more about what's happening with this tumor.

My questions are:

1. Is anyone living with residual tumor? and what is your prognosis? symptoms?

2. If my son ever has a 2nd surgery, would it be possible to remove every trace of tumor from the spinal cord?

This is all just so frustrating, I really felt that after his surgery we would not be dealing with this again. I'm just glad this association is here giving such valuable support and information.

Thank you for taking the time to read this post.

Vanessa

[Linda51]

Hi Vanessa,

I have residual tumor and been living with that almost 14 years. I also been through 2 surgeries. My first surgery was more like an exploratory surgery to see what my surgeon was up against since the MRI didn't show that to well and to do a biopsy. My second surgery was to get all the tumor out but there was a piece of tumor attached near the main blood vessel that wasn't safe to removed so he left that so he wouldn't paralyzed me. Also the MRI later on show another piece of tumor that my surgeon didn't know he had left. For myself 6 months later after the second surgery I had 33 radiation treatments and still the tumor is still there but as far as I know there hasn't been any tumor growth. I haven't had an MRI since 2004 in that area so I am needing to get another MRI sometime this year.

I was 29 when I was diagnose and had my surgeries so this is from an adult perspective. It is possible to get all of the tumor out the second time but also you want your child NS to make sure he does everything to make sure he doesn't paralzed him even if that means some tumor has to stay. Most of the time these tumors are slow growing that it takes years for them to do anything. You can have a normal life with some tumor still there. I have deficits but I am still living my life and this tumor doesn't have me I will not let it.

Wishing your son the very best. Hang in there and keep your chin up.

~Linda

[Vanessa]

Linda,

Thank you so much for sharing your story, I really appreciate it. It's good to hear that it's possible to live with residual tumor, especially since it's something we might have to deal with.

Thank you for your good wishes, Vanessa

[8338]

Vanessa,
I, to, have residual tumor left. I, like Linda, have been throught two surgeries. After my first surgery all my tumor was still there because the surgeon couldn't get it out. Dr. Jallo did my 2nd surgery five years ago and got 98% out because my nerves were wrapped all around it. I have some deficits but am still walking and working. Dr. Jallo said that mine is a slow growing tumor and as far as my last mri goes, which was Dec. last year, it has not grown.
Barb,

[billirwin]

Hi Vanessa

I just had to jump in here. I used to be more active in this group a few years ago, but got lost in returning to 'normal' life, and the old board falling over. Anyway, I had surgery in 1994 (mostly exploratory), a bunch of radiation, then more surgery in 1998. They took out about 90%, but it was such a mess that they thought if they tried to get it all there was a big risk of quadriplegia. i have had MRI's every 3 years since, and am now 10 yrs post surgery with no further change. Mine was a very slow growing type of tumour, but most of the time I can put the dark days behind me now. I have some residual deficits, mainly on my left side, but generally they don't slow me down too much.

All the best, Bill

[Vanessa]

Barb & Bill, thank you so much for your replies. I'm glad you guys are doing well. I guess it's probably close to impossible to remove all traces of a tumor on the spinal cord because of all the risks involved.

I'd love to also hear from the parents out there. How are your children living with residual tumor?

Have a great day

[bridger]

Hello,

My 8 year old son has some residual tumor because he would be paralyzed if they had taken it out and so far--4 years later no regrowth. He is checked frequently at Seattle Childrens for any tumor, he does have some small side effects from the surgery but nothing like he was before. If the tumor is not growing then they leave it alone which at first I was not happy to know that but now I realized they were right, my son would not be walking it they had taken the rest out and it has just sat there for four years so the doctors were right.

Good luck and let us know what you find out.

[juliefromca]

Vanessa,

I am new to this site with my own diagnosis and am still learning about this illness. I just wanted to say that I will keep you and your son in my prayers and that, yes, i would get a second opinion! It couldn't hurt.

As a fellow parent, I can only imagine how hard this must be for you. Take care of yourself.

Julie

[Vanessa]

To Bridger: Thanks so much for your reply. It's great to hear about your son and that he's doing so well. It's stories like these that give us hope. Although it would be hard to know he has part of a tumor on his spinal cord, if it's something he could live with without any side effects, I guess we (and HE) would have to learn to live with it.

To: Julie, thank you for your reply and prayers. My prayers go out to you as well and I'm really sorry to hear about your prognosis. We did get a second opinion from Dr. Jallo, and when he has the MRI this Thursday I will send him a copy of it as well. We are just taking it a day at a time and praying for the best. As a parent, there's just no words to describe the heartbreak of seeing your young child going through something like this. But also, I know it could be so much worst and we're just thankful to God for all of our blessings, and that he did so well after his first surgery. May God bless you as well.

Thanks everyone!! I'm so thankful this website is here, when I have no one to talk to about this, I come to this site where I can get encouragement from others that have been there. God bless you all.

Vanessa

[dugu]

Hi Vanessa,
I just saw this post. It sounds similar to my situation -- I was told part of the tumor was not removed because it wrapped around a major artery. I can only imagine how you must go through as a parent. In any case, my neurosurgeon once said that "you are your own best doctor", and told me to monitor the symptoms closely, as they are sometimes more telling than MRI. As you've seen my other post, I started to have symptoms before the MRI shows regrowth. Also, I wish I had kept a journal of the symptoms -- as time goes by, the memory of when I start to have which symptoms can be hazy.

best wishes to you and your family,
dugu