tumor regrowth(!) and question

[dugu]

Hi All,

I was on this forum in 2005, when I was diagnosed with a schwannoma in C3-C4 region. I was 33 and otherwise healthy, and the news really freaked me out. I received a lot of help from members of this board, for which I am eternally grateful.

I underwent a surgery and returned mostly to normal afterwards. I've had MRI every year, but was always told that the tumor was "stable". Over the years the symptoms slowly returned (my right side is numb and tight). It turns out that only 60% of the original tumor was removed, and that it has grown by 50% or so. It's now 1.3cm*1.2 cm in size. My doctor asks if I want to consider radiation therapy.
My questions are:
1. does anyone has any recommendation/feeling/experience with radiation therapy? How does it weigh against surgery? I did a little bit of research online, but most pages tout the benefits but not the risks. I'd like to hear from someone who have had first hand experience...
2. Is it normal that the tumor has regrew so much?
3. Could someone recommend a neurosurgoen in the Los Angeles area? The doctor who operated on me the first time has passed away (God rest his soul).

I appreciate any help/comments you can give. Million thanks in advance!

dugu

[bethann]

Dugu,

I am so sorry to hear about your tumor growing! I think it would help you to get a second opinion from a Doctor who is experienced in this. I am sure that you have seen Dr Jallo's name on this site when you were on it before. I have sent my mri's to him and so has a lot of people on this site. I am sure someone else will even post contact information for you.

What type of tumor do you have? It seems that only a few types shrink with radiation.

Beth

[hairchik]

I think it would be a very wise choice to send your mri's and story to Dr. Jallo. He will tell you what he thinks is best and can probably give you the name of a very trustworthy NS. Dr. Jallo is really awesome! I totally trust his opinion. Angie

[dugu]

Hi Angie and Beth,

Thanks a lot for the response. Yes I've heard of Dr. Jallo, but I feel kind of strange to send him my MRI results, since I don't know him at all... If you don't think this is awkward, I'll give this a try.

thanks,
dugu

[Vanessa]

Hello Dugu,

I'm also sorry to hear about your tumor regrowing. Based on recommendations from this board we also sent Dr. Jallo our son's MRI's for his opinion. I started out by sending him an email, introducing ourselves and our son's situation. I sent the email via a link in the Johns Hopkins webpage for his department (Peds Neurosurgery). To my surprise, he answered me personally the next day. He told me to send him copies of all pertinent MRI's and a medical history. Once he received them, he sent me an email with his opinion. You may also want to ask him if he can refer you to an NS in your area.

You can write to Dr. Jallo at [e-mail]

Good luck and take care,
Vanessa

[Linda51]

Hi Dugu,

Were your symtoms the same as you had in the beginning before your diagnose? Just curious since I am experiencing some signs as well.

I have had radiation but I had a different type of tumor from you. I can't say yes or no on radiation. I have no regrets I had it but at the same time it not for everyone. I would get several opinions and Dr. Jallo would be a good start for you.

Sorry you are going through this again but remember if you went through it once you can do it again. I think if we all are honest with ourselves we all have that fear it might come back one day. I just had my 14th anniversary yesterday so I am thankful I am good as I am. Keep us posted.

~Linda

[mak164]

I can't advise you, but can tell you that I had successful radiation therapy for a lumbo-sacral ependymoma in 1959 after over twelve months of symptoms.

David.

[dugu]

Thanks everyone for their replies! Again, your kindness makes my day (a bit cheesy... but true)

Vanessa, thanks for sharing your experience. I just got copies of my MRI results from the hospital, and I'll email them to Dr. Jallo.

David, thanks for the information. It's good to hear some success story on radiation therapy! The benefits are obvious: non-invasive, faster recovery, etc. Did you notice any side effects, such as damage of non-tumor tissues, swelling, etc?

Linda, thanks for the encouragement. I was hoping put the whole thing behind me... no such luck. Oh well. To answer your question, yes, the symptoms are very much similar to those in the early days (say 1.5 years) before the surgery. I started to experience the symptoms about 10 months after the surgery, and over the past 3 years they progressed slowly, sometimes coming and going, though I'm still much better than right before the surgery. What's strange (in my opinion) is that the MRI results from the previous years were always "stable", so the doctor thought the symptoms could be due to scar tissues; two weeks ago I was told of the regrowth by 50%. So I think you should probably talk to your doctor and
maybe have a MRI.

dugu

[dugu]

Linda, one more thing about my symptoms. Most of the symptoms are mild versions of what I had before -- the right side of my upper body is stiff and tight, right pinkie is weak (have trouble using chopsticks), and achy neck and shoulder (mostly on the right side). In addition, I also have some new symptoms, ie. the right side of my lower body (buttock, leg and foot) is tight and weaker than the left side (I'm right-handed).

dugu

[shannan]

Following my initial surgery 18 years ago I received a full course of radiation, I do not know how much of my tumor was resected originally. I went through another surgery last year as the tumor had regrown. Initially my tumor was in the lumbar region, my last surgery included thorasic and sacral regions where the tumor or possibly new tumors had grown. Some of the symptoms I was experiencing from the tumor growth were thought to be attibuted from nerve damage from radiation. Look deeply into both treatments, although sugery is harder on the body in short term, radiation can cause damage long term and is not always effective. My tumor is an ependymoma which is different from yours, but they say that that radiation is usually very effective on my class of tumor. I don't mean to scare you, but my personal experience has not been positive with radiation as.... I had it, it caused damage and did nothing for me in the long run.