Why the tumor seems bigger after the radiosurgery?

[IZD30]

Hello Everyone,

I have recently been diagnosed with AN; my tumor size appears to be around 2cm.  I am considering radiosurgery since I have tongue and facial numbness, and my local doctors told me that any surgery may cause permanent facial nerve damage.  This forum has been really informative, but I also noticed that in some members' signature blocks, the tumor size after GK or CK treatment appears to be bigger than the size before the treatment.  I am curious why is this the case?  Shouldn't the tumor shrink in size?

I am 30-year old female, so my priority is to preserve facial nerve.  I am looking at all options to lower my chances of permanent facial nerve damage after the surgery.  Any advice is very much appreciated since I am just learning about different treatment options and the long-term effect.  Thanks.

[Blw]

They swell after radiating as part of the degenerative process--a good thing. This can happen through two years. Most doctors will talk about stablizing them, where they never need to be treated. Better outcomes are when they undergo apparent necrosis (my doctors have said that is not necessarily the correct term) where the central part darkens, which many suggest is the tumor dying. I had very similar symptoms, which led my doctors to believe it involved the facial nerve. In that case, radiation is arguably the best treatment choice since you reduce the chances of damage to the facial nerve by surgery. Some surgeons can handle dealing with the facial nerve, but damaging that nerve is disastrous. Every consult I had said use radiation--Stanford, Pittsburgh, UVA, and a neurosurgeon who had done around 800 ANs.

[PaulW]

My Doctor explained to me that as the tumour cells die they start to lose control of their intracellular processes. The tumour cells are no longer able to control the amount of water within the cell, and as a result each individual cell gets bigger. The term necrosis is used a lot the correct term is actually apoptosis (programmed cell death). The reason the AN looks darker in the middle is because of increased water and reduced blood flow within the tumour.. If it doesn't look darker in the middle.
Dont worry. One study showed that seeing a dark centre to the tumour has absolutely no bearing on the success rate..   

[Blw]

My Doctor explained to me that as the tumour cells die they start to lose control of their intracellular processes. The tumour cells are no longer able to control the amount of water within the cell, and as a result each individual cell gets bigger. The term necrosis is used a lot the correct term is actually apoptosis (programmed cell death). The reason the AN looks darker in the middle is because of increased water and reduced blood flow within the tumour.. If it doesn't look darker in the middle.
Dont worry. One study showed that seeing a dark centre to the tumour has absolutely no bearing on the success rate..

Agreed.

[arizonajack]

You can see the regression of a dying tumor after radiation. Note that swelling occurs within the first year and shrinkage occurs after 2 and 3 years. YMMV.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

This next site shows the regression of a variety of tumor sizes and explains a lot about radiosurgery.

http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO

[Blw]

It's amazing how big some of these can get. Did you see anything conclusive at your 6 month? Looks like a slight difference.

[lilith]

Thanks for the links Arizona.

[rupert]

I'll chime in here and say that not all tumors swell after GK or CK.  Only a certain percentage do, some more than others.   My AN never did swell up.   The AN was reduced in dimension at every follow up MRI.  This of course does not mean you won't have any post treatment symptoms and individual results can vary.

[PaulW]

Very true Rupert. Depending on which study "Transient Expansion" happens in around 30-60% of cases.
 

[MG]

Thanks arizonajack, for the links. Very helpful!

MG

[keithmac]

You can see the regression of a dying tumor after radiation. Note that swelling occurs within the first year and shrinkage occurs after 2 and 3 years. YMMV.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

This next site shows the regression of a variety of tumor sizes and explains a lot about radiosurgery.

http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO

way to go, Jack!  What excellent sources of information!  They've been added to my dossier.

[Echo]

Hi IZDA30,
 
I had several symptoms develop pre and post treatment, most of which have resolved. Since you mentioned having tongue and facial numbness, I thought I'd chime in with my experience.

My AN was 2.4cm when I had Gamma Knife.  At the time that I had GK I was experiencing numbness at the corner of my mouth and on the tip of my tongue.  Within roughly 3 months post treatment I noticed the numbness was gone - it has not returned and I'm coming up to 3 years this Sept.

Cathie.

[IZD30]

Thanks everyone! This is very helpful, and I have a better idea of what to ask the doctors now. My concern is that if I am one of those whose tumor will swell, seems like my facial numbness can get worse. I'm hoping that won't happen.

Echo, Good to hear your experience. At one point I have given up on fixing my tongue and facial numbness. I have heard that whatever symptoms I have going into the radiosurgery, I will probably come out the same. Your experience is encouraging.

I am talking to different neurosurgeons now, and it seems like I am just getting contradicting messages regarding my numbness and the risks of facial palsy for radiosurgery vs. surgery. This is going to be difficult.

[PaulW]

I disagree that what you have prior to radiosurgery you have afterwards.
My balance and hearing have improved.
Facial numbness comes from the trigeminal nerve not the facial nerve
Facial nerve preservation statistics are far better with radiosurgery.
The vague head. Plugged ear feeling, all gone.

[Tumbleweed]

IZD30:

Your facial symptoms might increase after radiation, but this would almost certainly be temporary. One reason for an increase in symptoms would be tumor swelling, which could put more pressure on the trigeminal nerve. It is extremely rare for tumors to fail to shrink back to their pre-treatment size after initially swelling. And sometimes they shrink even more. If I remember correctly, roughly 25% of Dr. Chang's CK patients see "gratifying shrinkage" eventually; i.e., the tumor becomes significantly smaller -- about 25% smaller on average for the group -- than it was at the time of treatment. I was fortunate that my tumor shrank around 70% in volume in the couple of years following CK -- but not before it initially swelled from the radiation treatment. The temporary swelling increased my symptoms as the tumor put more pressure on my balance and hearing nerves. Thereafter, as the tumor shrank, my balance improved dramatically as the pressure on my vestibular nerve lessened. Bottom line: Your symptoms may increase temporarily following radiation treatment(s), but the odds are overwhelming that they will eventually revert to how they were before you were treated or possibly even improve further (possibly dramatically). I regained about 90% of my balance within a couple years or so of getting CK. YMMV.

Best wishes,
TW