AN with 2 cyst!

[wjolly68]

My dad was diagnosed 2 years ago with AN. Because of his age (79) and health, they have been watching it. Over the last year it changed in size quiet a bit. So, they decided to do radiation. But at the last doc visit ( with the radiation oncologist) we were told that there were 2 cyst growing, one on each side, which is where the problems are coming from. One is about the size of a marble and the other is bigger than a marble.  He has lost all hearing in his right ear, the right side of his head feels like he has had a shot of Novocain, and he has balance problems. The cyst are very close to the brainstem so instead of 1 to 3 radiation treatments now they say it will be 25 to 30. My dad ( and my mom and me) are very frustrated that we were not told about the cyst sooner, maybe something could have been done before losing feeling in his face. I have read that radiation may not be the best  treatment for tumors around 3cm, so I am concerned that radiation might not be best choice. Doctors say that because of where the cyst are any treatment will be hard. I have a hundred questions in my head but I guess the first 3 would be - Has anyone had these cyst attached to the AN? What was your course of Treatment?  What was you outcome?

[geexploitation]

Wjolly68--

I'm glad you posted and hope I/we can clarify some things for you, but I'm confused about a few things in your post. Let me ask some clarifying questions and offer some information.

What do you mean by "one on each side?" Does your father have one schwannoma (on one side of his head) or two (one on each side -- referred to as "bilateral")? Do you mean that he has one schwannoma with two cysts growing out of it?

From the your description of his balance problems, it sounds like the latter is the case...?

Cysts are tricky things. Usually they are one of two things: a pocket of tumor filled with what is essentially decomposing tumor tissue, or a balloon-like appendage to a tumor where the tumor has had some internal bleeding. In either case, cysts *can* appear quickly and cause problems for people, but there is no way to predict when/if this will happen. So it's *possible* the cysts are new... you can find this out by looking at your dad's older MRIs and comparing them with his recent one(s).

What are the dimensions of the tumor and the cysts? Marbles can vary appreciably in size.

The tumor being next to the brainstem is tricky and probably the biggest reason for spacing out the radiation dose over 30 treatments (this is called "fractionation").  Bigger tumors (3 cm is the usual cut-off point) ARE harder to treat with radiation, so they are often treated with "excision" (cutting them out in surgery), especially if they are next to sensitive things like the brainstem. But the surgery itself is very serious, and your dad's age is probably making doctors nervous about cutting open his skull (I just had the surgery and it's been very hard at times, and I'm only 34!). Thus (probably) the decision to try radiation.

So as you can see, there are a lot of factors that go into determining treatments -- age, size of tumor, location of tumor, etc.

To answer your bolded questions: cysts are common in schwannomas (my tumor was part solid and part cystic); my course of treatment was surgery (but that's due to many different factors); and my outcome has been great so far, but results will vary with all of the factors that go into determining treatment -- especially age, which unfortunately is not on your dad's side.

Hope that helps a bit. Feel free to ask more questions.

Sean

[It is what it is]

I don't know the answers to your questions but your dad sure has a right to get second opinions from other physicians around the country specializing in these tumors. 

Karen

[Jim Scott]

wjolly68 ~

I'm sorry to learn of your father's problems with an acoustic neuroma and accompanying cysts that have complicated finding a solution.

It's seems obvious that your father's age (79) is causing the doctors apprehension about recommending AN surgery even though this would seem to be the best approach to removing the tumor and cysts.

The reality is that AN surgery is serious and takes many hours to complete - but has a miniscule mortality rate.  However, I'm sure the hospital - as well as the doctors involved - both have limits on what kind of invasive surgery is recommended on elderly patients.  This leads them to avoid recommending or performing AN removal surgery, rendering radiation the only remaining option.  You're correct that tumors over 3 cm are not often good candidates for radiation and most radiation oncologists won't accept a patient for radiation with a tumor that large, although the fractionated radiation approach (FSR) that has been recommended is often very effective.  I speak from personal experience.  I was 63 at the time of my AN diagnosis.  My large (4.5 cm) AN was surgically 'debulked' (to 2.5 cm) prior to radiation.   Immediately following surgery my symptoms disappeared and never returned. The 26 FSR sessions (3 months later in a planned treatment approach) were uneventful and within a few years, the debulked, radiated tumor showed signs of necrosis.  My surgery and radiation occurred six years ago.  Today, (at 69) I'm doing great. 

FSR may well be a viable alternative to surgery for your father but that is a decision only a trained physician, your father and you can make.  I wish you and your father all the best.

Jim