New growth-What should I expect

[Shan1014]

Hi,

I finally got the results of my 5 month post surgery MRI.  The Neuroma is growing again and it is growing fairly aggressively.  I have had such a good recovery that I am in a bit of shock.  The original was pretty large, 4 cm, and apparently, it is already grown a fourth to a third of that size in 5 months.  Not so slow growing, huh!

I am going in to see, what I am told, is one of the best in the country - Dr. John Kresl for radiology treatment.  

My surgeons had to leave about 15% of the tumor behind to save the nerves.  I am curious if this is common to have regrowth and what should I expect from Radiotherapy?
My website on recovery if you are interested   mymediabandit.com/
Thank you everyone.
Shannon  

[tenai98]

Sorry to hear of he regrowth. My surgeon had to leave some of the tumor behind as well to save the facial nerves...So far it is stable...I'm sure those who have had radiation will pipe in shortly about radiation...what kind are you having? CK or  GK?
JO

[Shan1014]

as far as what kind?   Gosh, I don't even know yet.  My doctor just said it was the newest and best.  I will know more Tuesday once I see the Radiology Dr.

[iluuvpups]

Hi, Shannon.  I'm really sorry to hear this.  It sounds like you might want to do some more research on radiation as there are difference kinds - FSR, gamma knife, cyberknife, and proton - are  the ones I've heard about.  Good luck to you and keep us posted on your journey.  We're here to support you!  --Carol Ann

[Lizard]

Sorry to hear that you have regrowth.  This is not the kinda thing that we like to hear after a visit to the tube o gloom.  Please do look into the different forms of treatment before you decide.  Get a couple of opinions and then make your decision on the type of radiation as they are quite different.  Don't be hasty, but try to settle on something that you are comfortable with sooner than later.  Wouldn't want you to have to have another surgery because the AN grew so fast you didn't have time to do radiation.
keep us posted and hang in there I'm sure you are feeling quite frustrated.
Liz

[Jim Scott]

Hi, Shannon ~

I'm sorry to learn about your AN re-growth. All AN patients, whether they chose surgery or radiation, are rightly concerned about the possibility of tumor re-growth.  For AN surgery patients, the re-growth rate is well below 10%.  Unfortunately, you seem to be in that statistical minority.  However, radiation is usually very effective in destroying the tumor's DNA (ability to reproduce it's cells) so I hope the radiation oncologist will be able to use radiation to kill the thing, once and for all.  Let us know how your consultation works out.  Thanks.

Jim

 

[mysticfem]

    Very sorry to hear about regrowth after surgery. I've seen postings by people who've had more than one surgery and wondered if it was because some of the original tumour had to be left behind and then grew again. It seems that it does happen.
   I'm also in a statistical minority. I have regrowth after first having had radiation in 2007. What I had was stereotactic fractionated radiation which damages the DNA of the tumour, so that when tumour cells try to divide, they die. I received 15-20 min. every day for 25 days. It was an ordeal, but it could have been worse. Unfortunately, this past year, the tumour grew fairly quickly and I now have to have a trans-lab which I'm hoping will be a permanent solution.
   I've heard very good things about gamma knife for smaller tumours - yours must be about 1.5 at this point? The best thing about it is that it's a one-time treatment. All the best, we're all with you.
  Sylvie
3 cm Left AN; radiation in 2007; translab scheduled Sept.27, 2010