tumor regrowth(!) and question

[8338]

Hi,
As Linda said, we all fear that horrible tumor to grow back. I had Dr. Jallo remove 98% of mine.
I got Dr. Jallo's name from this website, emailed him, he answered me back and then he even called me on the phone!!!!!! Don't feel wierd about it. He is a very caring and knowledgeable surgeon.

Barb

[Linda51]

Hi again Dugu,

Thanks for the info. I was also right handed but after my surgery I had to start learning to go to my left hand since my right hand was useless. That what scares me now since my left arm hurts all the time and I haven't done anything to cause it to hurt. Also I been having sharp pain to go side of my head and back in the area I was operated on and I haven't experience that kind of pain in a long time so it kinda sending tumor alert but also I have been under stressed alot lately with the conference and other things as well so I keep thinking maybe it will just go away. Then I fell backwards over a year ago on the esculator so i'm thinking maybe it coming from that even though it been awhile. Scar tisssue can also cause problems and I have nerve damage and tethered cord as well. I will get an MRI but it will have to be around Sept unless more symptoms start to show.

Back to you I would say don't go with radiation until you have explore all of your other options. There is surgery and cyber knife and then radiation. I have been through 2 surgeries and I will say from my experience there is no two surgery alike. I did better the second time around and also there has been other sct survivors to say the same thing. As we all know there is no 2 outcomes just alike so I don't won't to lead anyone thinking that the second surgery is a piece of cake because it not but for some of us there was no more deficits than the first time around or it was just mild nothing major like paralysis. The bad thing about going through radiation is if it doesn't work or if that tumor keeps coming back and you need a surgery it makes it hard on the surgeon to operate again but if you have surgery again first then radiation if necessary that would be the best route to go. Radiation should really be only consider if the tumor can't be removed.

This is only my point of view and I been through all of it always get several opinions before you make your final decision. I wish you the best.

~Linda

[Joel]

Let us know what Jallo says, OK?

[dugu]

Shannan, Barb, Linda and Joel, Thanks for the information! I just wrote to Dr. Jallo (after some procrastination) and I'll let you know what he thinks.

Linda, thanks for sharing your experience, which are partly similar to mine, and partly different. It can get so confusing, as the symptoms come and go, and can be induced by other events like falling and stress! MRIs are definitely helpful. Perhaps you can ask to move the MRI dates up? Also, I think I'll start keeping a journal of my symptoms... but then again, I'm not the most organized person, so I probably won't be able to keep it for very long.

dugu

[darren]

hi, I just wanted to say that radiation worked for me, my tumor was in the lumbar area and it grew back within one yr of my first surgery. I don't know about nerve damage from radiation. I had nerve damage from surgery, the radiation treatment I had was in 1987, and the tumor has not grown back since. I think if I had not had radiation, it likely would've grown back. I knew a girl my age who had the same thing. she didn't want the radiation because she wanted to have kids when she grew up. her tumor kept growing back. I don't know if she ever got the radiation treatment, but she most likely did.

[8338]

Linda,
I wouldn't doubt that all that stress that you're under is doing a trick on your body. Everytime I am stressed about something the pain seems to go straight to where my operation was. It definetly needs checking into though. Keep us posted!!!!!!!!!
Barb
Of course, like Joel says, a glass of wine is always a good stress reliever ;D

[mak164]

Jul 8, 2008 15:44:40 GMT -6 @dugu said:

The benefits are obvious: non-invasive, faster recovery, etc. Did you notice any side effects, such as damage of non-tumor tissues, swelling, etc?

No immediate long-term effects, apart from the usual numbness in my perianal region and parts of my legs and feet, and some slight muscle wasting and weakness in my left leg.

I have had some late onset problems but nothing to offset the recovery I had from radiotherapy.

[dugu]

Hi Darren and David,
Thank for sharing your experience with the radiation therapy. Dr. Jallo responded to my email, saying that he won't advocate this treatment, but he'll have to look at my films to make the call.
On more question: did you have any particular kind of radiation treatment, e.g. gamma knife, cyber knife, etc?

thanks again! I'm slowly steeling myself for the prospect of another surgery...

dugu

[mak164]

Hi Dugu -

It was plain vanilla radiotherapy. I found out relatively recently that the machine had only been installed the year before I received treatment, so if I'd have had the tumour earlier things might have turned out differently. It was a long time ago, of course, and things have moved on since then.

David.

[jar]

I think I have the same kind of tumor. I had the surgery in Jan.2005 and the tumor regrew, then I had the second surgery a week ago. I'll getting better. This morning, I walked slowly about 40mins.
Before the surgery on Wed, my surgeon told me another case, which is very bad. The tumor regrew 7 times. Regrowing sometimes means from the tumor to cancer.
He told me that surgery is the only option at this point because it will paralize me if I don't get the tumor removed.
Anyway, I had the surgery and feel just the same after the first surgery 3 yrs ago. This time, I decided to try to live differently.