Regrowth at 1 Year?

[kma]

I had my AN removed last year 2/6/9.  After surgery, the doctor told my husband that "we got it all".

Now, one year later.....

I just had my one year MRI (first MRI since before surgery).  I went yesterday to see the doctor to review my MRI.  Well....imagine my suprise when he took me over to his computer to "see something" he wanted to show me on the MRI. 

He now says that they probably left some residual tumor behind and that it appears to have grown.  He said there is a small possibility that it's scar tissue but he felt it was more likely tumor.  He said he wants me to have another MRI in six months so we can compare the two MRIs to be sure of what we are looking at and we can make a decision as to what to do then. 

Then he tells me that surgery would be no big deal since I've already lost my balance nerve and that I'm already SSD (after first surgery) ~ so, this surgery would be much easier ~ like a walk in the park!  Or...we can discuss radiation ~ I am not a fan of that option. 

SERIOUSLY??....not what I was expecting at the ONE YEAR MARK.    ~Kathy

[Jim Scott]

Kathy ~

I'm sorry to learn of a possible tumor re-growth, which is not that common but when it happens to you, can seem devastating.  Even with the best intentions, due to the narrow operating area and other factors, surgeons can rarely remove every scintilla of tumor and, unfortunately, re-growth can occur.  I hope it hasn't in your case but only another MRI in six months will determine that to a medical certainty. 

I would try not to stress too much until you have a definitive answer to the question of re-growth.  I know, easy for me to say, but necessary unless you want to allow a 'what-if?' to dominate the next six months of your life.  I know you won't allow that to happen but your disappointment with the possibility that some residual tumor has re-grown is perfectly understandable.

I'm sure many prayers will be said for you, Kathy....especially as your next MRI scan date approaches (in August).  Mine will be among them.

Jim

[CHD63]

Kathy .....

The possibility of regrowth is everyone's nightmare.  Each of us is unique so you must remain cautious and follow-up with the MRI in six months but this sounds so familiar ......

I had retrosigmoid surgery for the "total" removal of my 2+cm AN in February, 2008.  At my first post-op MRI six months later (July, 2008), it showed an area of enhancement consistent with residual tumor or post-operative changes.  My one-year MRI (February, 2009) still showed an enhancing area ..... compatilble with a residual tumor (no mention of post-op changes/scar tissue).  My neurosurgeon still felt it was most likely scar tissue.

This February (2010) the MRI was read by a different radiologist and it says "abnormal enhancement in the left internal auditory canal ..... may be related to residual intracannulicular acoustic schwannoma ....."  Although I am still waiting for a return call from my neurosurgeon, I do not expect him to say anything other than it is stable.

I pray this is the case for you as well.  How well I know the feeling of shock.  Try to put it to the back of your mind as much as possible.  If you have any significant changes in your symptoms, by all means contact your doctor for advice.

Clarice

[lawmama]

Kathy,

I am so, so sorry to hear about your possible re-growth.  I truly hope that they are wrong and that it is just scar tissue.  I hope the new MRI in 6 months will prove the regrowth theory wrong.  You are in my thoughts and prayers.

Lyn

[tenai98]

Kathy
I just went thru the very same thing.  The neurosurgeon told me he left 2 small strands behind to save the facial nerve..When I asked how big that was, he replied, like the lead in a pencil...I was okay with that knowing that if it regrow, he and I had discussed radiation...My first MRI post op (six months later) showed the tumor at 16mm ...which was bigger than the MRI post op...which came in at 14mm....Now the operative report put it at 20mm...So I knida panic...Numbers just didnt add up...Two small strands doesnt equate 16mm.  My ENT agreed...so he ordered another MRI and I got the results today...It is now in at13mm.
I'm still looking at radiation and see my radiologist next friday....
Lets hope yours is the same...SHRINKAGE!!!!
Jo

[tichinose]

I just surprisingly found out my left behind tumor shows signs of regrowth.  It was 1.2x1.8 cm and not it is 2.2 x 2.8....I have the AN taken out in July 08 and now waiting on options for what to do....yuk

[Kaybo]

Kathy~
How did I miss this??    I am so sorry that you are having to go through this!!  I truly don't know what to say!!  PM me if you would like to chat!!

K   

[mandy721]

Kathy and tichinose,

I can't imagine facing a second round of surgery and I know my husband can't either.  At 7 months post surgery,  we were thankful that his  recent MRI showed no measurable growth of the sliver of tumor that remains.  His neurosurgeon has said that  GK or CK would be the recommended treatment if there is a need.  I can't imagine how a second surgery would be "a walk in the  park."  It is still brain surgery! I imagine it would take less time, but it is still a big deal.  Ken had such a hard time recovering from the first surgery, I know that another surgery would only be considered if there were no other options.   

Miranda

[Dan]

Kathy,

They told me the exact same thing.  We removed it all, 12 month MRI 3mm possible regrowth, 18 month MRI 3mm possible regrowth or scar tissue, 30 month MRI 3mm most likely only scar tissue.
They told me to come back in 12 months for another MRI, just to be sure. 

Dan in Germany

[leapyrtwins]

I misssed this thread too.  Don't know how.  Guess Kaybo and I were absent from the Forum that day.

Anyway, Kathy, sorry to hear about the possibility of regrowth but along with everyone else I'm hoping and praying it's just scar tissue.

As far as "total" removal of an AN, it's not as definitive as it sounds.  Doctors obviously do their best and when they say they've totally removed an AN they mean they have removed all pieces of the tumor that they could visibly see through their microscope.  However, even one cell left behind unintentionally has the possibility of growing again.

Sounds pretty scary, but in reality only 1-2% of surgery patients who have had their AN removed "completely" experience regrowth.

Jan

[tichinose]

I have to wait on neurologist but it is  pretty good size and I have now complete numbness on right side of face, and when I sleep on AN side even my arm feels tingling...something seems wrong.  We'll see!

[cecile k]

Hi Kathy:

From what you have posted, I read that it wasn't your neurosurgeon who read the MRI? It's important to have your surgeon read the MRI's - then at least you will have consistency.

My neurosurgeon (Vancouver, Canada) orders the followup MRIs and always reads them himself and sends me his personal assessment of the MRI's. He also sends a copy to my family doctor but I never have to go through my family doctor for the info. Perhaps I'm just blessed that my neurosurgeon insists on this approach.

Cecile

AN surgery 8+ years - now MRIs every three years....

[CHD63]

Kathy .....

I agree with Cecile that your neurosurgeon will know best whether this needs immediate attention or not.  Although there is always a radiologist's report of every MRI, your neurosurgeon is the bottom line authority.  My local primary care physician orders my follow-up MRIs and a local radiologist "reads" it.  However, I always immediately send a CD to my out of state neurosurgeon and his assessment is the only one I am sure is correct.

Best wishes.  Clarice

[FlyersFan68]

One year is too early to say it's regrowth in my opinion. There are many changes that occur within one year. I had fluid and scar tissue that dissolved by year two and now it's perfectly clear six years later. My first two MRI's were a bit shaky since scar tissue and fluid really light up and it's not uncommon for reports to mention the possibility of residual tumor. Even if they did leave a small piece behind to preserve your facial the odds of it growing again is possible but unlikely. It may not ever establish a new blood source. Persoally, I wouldn't consider any treatments until being further convinced over a longer period of time..

[tichinose]

Well, the neurologist called today and I have to meet him again next week.  He says it is regrowth and he is surprised how quick it regrew.  We are gonna discuss surgery soon.  Yuk!!!  Does that tumor ever die permanently?