AN growing rapidly

[kathy g]

I have an AN which is now 3x2.3 cm.  I have been to an oncologist and had lots of scans.  Most people agree that it is an AN, except the House Clinic.

I was planning to have gamma knife surgery next week and got a letter from the House Clinic saying they think I should have the operation so that they can look at the cells, in case it is cancer.

Any idea what I should do?  Will the gamma knife take care of the rapidly growing AN?

Thanks so much, Kathy

[leapyrtwins]

Kathy -

I don't know the answer to your questions.   I know the docs @ House are some of the best in the field of acoustic neuromas, but I'm wondering what the oncologist had to say.

IMO, and it's just my opinion, an oncologist should know if a tumor is cancerous or not - since they are specialists in this field.  Did he/she somehow conduct any kind of tests? or just go by your MRI?

Although ANs typically don't grow rapidly, there are always exceptions to the rule.  My AN was 1.5 cm at the time of my diagnosis and was 2.5+ cm at the time of my surgery - approximately 6 weeks later.  Pretty rapid growth, but no one knew why it occurred.  My tumor was definitely an AN and the biopsies of it showed that it was benign.

You might want to get a few more opinions, both from doctors who treat ANs and from oncologists, before you make a treatment decision.

Good luck; please keep us posted.

Best,

Jan

[kathy g]

Thanks so much, Jan.  It is good to hear other people's ANs grow fast and are not cancerous.

The oncolgoist took a blood test from me and looked at my MRIs and CT scans.

Man, this is so hard.

Kathy

[MAlegant]

Kathy,
If it were me I'd want to get the tumor out, just in case.  Easy for me to say since I'm on the other side of this.  As Jan says, another medical opinion can't hurt.  Good luck and keep us posted.
Best,
Marci

[Kate B]

I have an AN which is now 3x2.3 cm.  I have been to an oncologist and had lots of scans.  Most people agree that it is an AN, except the House Clinic. I was planning to have gamma knife surgery next week and got a letter from the House Clinic saying they think I should have the operation so that they can look at the cells, in case it is cancer.

Kathy,
You have an interesting case. The fact that House thinks they should have a look inside is unusual.  Something must look different to them in the MRI.  Did they mention what causes them to suspect something other than a garden variety acoustic?   Which doctor did you consult with?  If they didn't mention it, I would suggest that you call back and try to get at what in their opinion suggests it might be something else.

I had my surgery done at House and there were six operations that same week.  My reason for saying that is that there is almost no facility which specializes in Acoustic Neuromas more than House. 

Gamma Knife and other treatments take up to two years before it is finished acting on the tumor. 3cm is close to the point where doctors suggest not to do gamma knife as there has to be enough room to accommodate the potential expansion of the tumor prior to it dying.  In an earlier post you mention that your tumors both have fluid.  Fluid filled tumors will factor into your decision as Gamma Knife may not be as effective on those types of tumors.

A first class facility to consult with for Gamma Knife is the UPMC and Dr. Kondziolka or Dr. Lunsford. http://www.acousticneuroma.neurosurgery.pitt.edu/ .  There is also a forum for CyberKnife questions that Phyl or Steve can apprise you of in which you can post questions.

All the best,
Kate

[Lilan]

I know how tough it is when doctors disagree.

From looking at your past posts, it looks like you have two masses in your head that are growing. Has there been any news on the other mass? Have you had a previous cancer of any significant family history of cancer to bend your decision in either direction? Or do you have medical reasons that make you not a good surgical candidate?

If you are in otherwise good health, have a 3-plus-cm mass that is growing rapidly, suspicion from House that it may not be an AN, and have access to very good surgeons, (also not sure of your age), I would strongly consider having it removed.

Looked at another way, have you spoken to a doctor who does radiosurgery for ANs and are they confident that they can help you? Do THEY even agree that you should radiate?

I have a tumor that is not an AN too, so they tested me in quick succession at first to make sure it wasn't growing rapidly. (It wasn't.) Even though everyone advised surgery, I was still resistant and sought out opinions from doctors who favored radiosurgery, such as Dr. Chang at Stanford. Absolutely no one, including him, thought radiation was right for my case -- which makes the decision a lot easier!

Even in confusion, eventually the weight of the evidence does tip. In your case you may have somewhat less leisure time if it's growing rapidly. How good are the oncologists you're talking to, are they top experts in neuro-oncology?

[kathy g]

Thanks so much.  The oncologist is excellent, part of Cedars-Sinai.  Also, other radiologists have looked at the masses.  The second mass is not growing.  But, as someone said, different doctors measure differently.  Tests done on different machines can read differently.

kathy

[Lilan]

Very glad to hear that. All else I can offer is best of luck in your decision-making. And if whichever treatment you choose doesn't do the trick, you can have other treatments later if necessary -- the pressure is high to choose "right" the fist time but of course you can have further treatment as needed also. But hopefully that won't be necessary!

[Kate B]

Thanks so much.  The oncologist is excellent, part of Cedars-Sinai.  Also, other radiologists have looked at the masses.  The second mass is not growing.  But, as someone said, different doctors measure differently.  Tests done on different machines can read differently.

kathy

Kathy,
You have a lot of information to sift through.  This list may help you hone in on a decision.

http://anausa.org/forum/index.php?topic=9601.0

Kate

[kathy g]

That was very helpful.  Thanks.

[Tumbleweed]

Kathy, I'm so sorry to hear you're going through this.

I also had a fast-growing tumor. Volume increased about 50% over a 6-month period. Doctors all nevertheless think it's benign, and my condition has improved significantly (including in unexpected ways) since getting CK 10 months ago.

One clue as to whether a tumor is benign or not is its appearance in the MRI. If it has an encapsulated look, it is more likely to be benign. If, on the other hand, the tumor has a spaghetti-like appearance, with many small, thin protusions invading nearby normal tissue, it is likely to be cancerous. Benign tumors take up space and push on nearby structures. Cancerous tumors invade those structures. While cancer grows rapidly, benign tumors can sometimes do so as well, often in intermittent growth spurts. No one knows why.

I would ask for more information on your blood tests. Did your doctors observe an abnormal amount of certain cancer indicators (such as T-cells) in your blood sample?

Steven Chang is one of the leading doctors in the world for treating ANs with CyberKnife. Perhaps you should email him: sdchang@stanford.edu. He will look at your MRI for free and quickly get back to you with his free diagnosis and let you know if you are a candidate for CK (if that interests you). If he thinks you should have surgery instead (he is also a neurosurgeon, which I believe makes him less biased), I would trust his opinion. Dr. Chang treated me. I have immense respect for him.

My two cents.

Best wishes,
TW