Regrowth after they got it all? Your story????

[amymeri]

I just had my 4 mos post op MRI and it was clear (NS said "it looks perfect, great") so I am relieved and am now just trying to heal and recover my CN 5, 7 function.  NS says he will see me in a year and he doesn't expect to see anything then, either, because he is confident they got it all.

This is great news, but I am wondering how many of you had regrowth after they "got it all", how long it took to show up and how common regrowth is and what are the options???

[tony]

The regrowth thing is something of a dilemma really
there was an NF2 who got a regrowth at 9 yrs
- but from his/her point of view it may have been a new one
- or the old one re-starting
at 9 yrs it was near impossible to say which it was.
Basically annual watch for 5 yrs then maybe 2 yearly if no movement
after that time ?
after 10 yrs, and no move, you are probably clear
- unless someone here knows otherwise ?
Best regards
Tony

[Kathleen_Mc]

I had a regrowth of the orginal tumor after being told "we got it all". The regrowth was found about 7 years post op. of the surgery to remove the orginal tumor. It is believed it was the orginal one regrown and the surgeon said he might of left a cell or two behind. I went into 5+ years of "watch and wait", was offered gamma knife but opted for surgery again.
Kathleen

[amymeri]

The whole regrowth thing freaks me out of course.  The NS said MRIs only yearly because the growth is so slow that if you image more often you can't see tiny incremental growth. 

My NS said the growth issue was less likely because the blood supply to the nerve and tumor was destroyed (it was a very vascular tumor) but anything is possible.

I am not trying to borrow trouble...just curious....

[Kathleen_Mc]

Amy: I wasn't supposed to have "adequate" blood supply to allow the regrowth to grow and this is why orginally I was told it likely was residual tumor and it likely wouldn't grow, but grow it did, slowly as is the case with most AN's. When I asked my doctor right out he admitted he may have left a cell or two behind the first time he was in there and there was really no way to know. The odd's of growing a brand new tumor on the same side are.....rare, more rare than having an AN in the first place.
I know it is a worry and worry I did for a number of years (actually I worried about getting a regrowth or finding out I had NFII right up until the regrowth was found, ironic ain't it!). You have to just "put the worry in the right place" and not let it rule your life.
Kathleen

[Raydean]

Amy

My personal thoughts is that the chance of residual tumor or regrowth is less with a  medical team that is experienced in the treatment of AN's.  A medical team that really knows their way around all of the AN stuff and knows what they are doing.

Chet had viable untouched  residual tumor found in a MRI 3 months post op. 
He also had a medical team that did 10 or so a year and probably never had operated on a tumor the size of Chet's the first time around.  Would it  of made a difference if an more experienced medical team had done the surgery?  You bet!!!!  Experience counts!!  Second time around for the residual tumor we made sure he had a medical team that had vast experience in the treatment of AN's
The last one 3 yeras post op was clean.  He's due for another MRI but he isn't in a hurry.  He'll probably wait till 2007 for deductible reasons.  I have to stress that he isn't showing any medical changes  so we're comfortable waiting at this time.  Should there be any changes  then we'd bump up the MRI

Thinking of you
Raydean

[Larry]

Amy,

Mine regrew after 3.5 years and am in watch and wait mode. I was told they got it all but was lied to. I sisnce sacked my surgeon.

If they leave some of the tumour, usually to preserve the facial nerve, then the chances of re-growth increase - as is the case with me.

I have 6 mthly MRI's for peace of mind.

Laz

[Patti UT]

HI ALL,
  This subject keeps coming up on the forum, seems as though there are many that do get regrowth, I think we all worry a bit about it.  I've read here about the fractional radiation done after surgery to kill off/shrink the remaining piece of tumor if some had to be left in. When the Doc's tell you it can grow back even if they happen to leave one cell behind, seems they would want to do something to kill that one cell. Hopefully something is being researched on thin. I'm not sure I would  go through the surgery again. But as rare as the Doc's tell us regrowth is, Seems like there is alot of it.  I already have "suspicious tissue" in my 1 yr post Op MRI. Coming up on 2 yrs post op. Need to go in a carry on to get another MRI. They don't think I should have one until 2009. WHAT? ARE THEY CRAZY?

Patti UT

[Larry]

Patty UT,

Don't listen to them 2009 - yeah right. Thats bad information.

Reading lots of these posts tends me to think that these AN's are not that straight forward a growth to remove especially as they wrap around nerves. I guess its a difficult one for surgeons - take all the growth and risk the nerve or be conservative. All I want them to be is honest with us.

Laz

[Jim Scott]

My neurosurgeon told me upfront that no matter how much of the tumor he was able to remove, he routinely had his AN patients undergo Fractionalized Radiation treatments post-op, so that was always part of my overall treatment plan.  Surgery, recovery, FR in 3 or 4 months.  Works for me! 

Now, it's almost 3 months since my AN was removed.  My neurosurgeon was able to remove most of the tumor (about 75%) and I've had an excellent recovery.  So far, so good.  I'm scheduled for a second (post-op) MRI on September 5th with (30) fractionalized radiation treatments to begin the week of September 11th, as planned.  I am not overly enthusiastic about doing this but the radiation oncologyst said that the FR treatments have an extremely high success rate (no recurrence of the tumor) so I'm taking a deep breath and going ahead with it to give me piece of mind.  I'll also be having bi-annual MRI's for the next five years, at my neurosurgeon's urging.  O.K. with me!


Jim

[jcinma]

It has been mentioned that the more experience the neurosugeon has the less likely a regrowth will happen-I had my first surgery in 1996 for a 1cm. AN by Dr Ojemann at Mass General in Boston.  At the time he was regarded as the doctor to see in the northeast for AN surgery.  He had done a lot of research and published many articles (some about regrowths) I was told there was less than 1% chance of this happening.  The post op report clearly stated total removal.  In 2004 I had a second surgery to debulk a 3cm. AN, I followed up with FSR.  I strongly urge people to have annual MRIs. In 1996 the protocol was an MRI one year later and then another in 5 years.  The growth rate of my regrowth was a bit unusual, but had I done annuals, it would have been detected a lot sooner.
Jane