Aggressive Regrowth

[DDWILT]

I had a 6 mo follow up MRI and was just told on Thursday that it all grew back in the 6 mos since surgery and that apparently my tumor is aggressive. I have an appointment with neurosurgeon tomorrow to find out when surgery will be. It's more than 30mm and I feel like I went through the first surgery for nothing. Anyone else have rapid Regrowth?  I am so afraid of another surgery. Didn't handle the first one well. I feel like my head is big and heavy and headaches are terrible and tingly tongue is the worst. So stressed and worried

[CHD63]

Hi DDWILT .....

So sorry to read that your tumor has regrown, and so quickly!  I also experienced regrowth after retrosigmoid approach on my first surgery.

My first surgeon told me after surgery that he had gotten the entire tumor.  However, I have since learned that if even one cell is left behind, it can regrow (albeit unusual).  I attended a session on tumor regrowth at the last ANA Symposium, where I learned that if the first tumor was an aggressively growing tumor, any regrowth was likely to also be aggressive.

If it helps any, I decided to go to CA for my second surgery, which was done via translab approach.  The second surgery recovery was waaaaaay easier than the first.  So far, at four years out from the second surgery my MRIs are stable (last one in May, 2015).

Feel free to PM me if you would like to talk.

Many thoughts and prayers.  Clarice

[DDWILT]

Hi Clarice,
Thanks for your response. I met with the neurosurgeon today in Philadelphia. He seemed concerned about the fast Regrowth and how big it is again but mentioned surgery may be in November. I am waiting for his office to call the other surgeons office and get back to me with date. Meanwhile I think about the tumor continually growing and I have to wait for a surgery date. It's so hard not to freak out. I had retro sigmoid in March and he said they would do translabrinyth this time and also do a ventriculostomy right before the tumor surgery to help with the swelling as I had severe swelling with first surgery
So much to think about and wonder about. How am I supposed to sleep?  I can't even stop thinking about everything. I don't understand why I have to wait so long for a surgery date. Why can't they bump someone who has a much smaller tumor and get me in sooner?  Thanks for listening! -Dawn

[palms0@hotmail.com]

Hello
Can you tell me who did your 1st surgery, & have you decided about the regrowth?
I live in Philadelphia also.

[DDWILT]

hi.  Dr John Lee and Dr Douglas Bigelow at Unv of Penn in Philly. 1st surgery retro in March and translabyrinthe oct 21. They were able to get 90% second time and will do radiation in 3 ,moths for balance remaining.  I highly recommend both surgeons.