Help - Advice Please

[Anomar11]

Hi Folks,

I'm pretty upset.  Just got off the phone with radio oncologist from St. Joseph's cyberknife who said she recommends surgery - that my AN is too large for radiation.  I looked at this same film at Mayo Clinic with the otolaryngologist who said it was on the smaller side??? and I was a candidate for gamma knife, then went on to consult/ask questions of the neurosurgeon at Mayo.  From what I understand CK will often do those that GK won't.  How can two teams look at it so differently?  Dimensions are 2.06 longitudinal, 1.15 cm transverse and 1.33 cp angle cistern.  I would more understand if it was a surgeon saying I needed to have surgery.  Anyway, I'm going to see if a few more doctors will look.  I sure do feel like the rug has been pulled out from under me.  Any thoughts?  Thanks.  Mona

[mk]

I know exactly how you feel. In my case, although the doctors at the Toronto centre that I consulted with had implied that GK is not a problem, one week before my scheduled treatment a couple other doctors from the same centre expressed reservations. Different doctors have different opinions, and some are more conservative than others. Some look at the overall deformation/effect that the AN causes or might cause in the case of radiation induced swelling, and are inclined to recommend surgery.
It is important to get as many opinions as possible. The doctors at the Cyberknife forum are often willing to look at your MRI and will offer you an objective opinion.

Marianna

[leapyrtwins]

Anomar -

lots of docs see 2 cm as the low end of the range for ANs they don't like to treat with radiation.

But all docs are different.  Some might tell you 2.5 cm or 3.0 is their low end.  You might want to seek another opinion.

Jan

[Kathleen5306]

Mona

In my opinion, you are in the most difficult phase of dealing with an Acoustic Neuroma.  The gathering of facts and options can seem overwhelming.  I know it was for me, at times.  I went through AN diagnosis and treatment twice.  First in 2002, and then again just 5 weeks ago.  This forum....for both venting my frustration and anger at my AN, and gathering information about my options, was a godsend.  Keep in mind, the reason you are getting different direction from doctors is because it is called a "medical opinion".  With opinions, they can all look at the same film and render a different opinion about treatment.  Keep asking as many doctors as possible what they would do in your situation.  I had a list of questions that I took to every team so that I was somewhat consistent in what I asked and I wrote down the answers to compare them.  At the end of the day, my gut told me what to do and who to do it with.  It was just the right decision for me.  Please keep venting your specific questions to this forum.  Many people have asked and answered the same questions you have.  Poke around this forum and look for issues that are relevant to you.  You will find great comfort in the others who have gone before you.  Eventually, you will know what is right for you.  Let me know if I can help.

All the best,

Kathleen

[Anomar11]

Thanks everyone for your replies.  I'm trying to calm down.  Another thing the CK doc said was words to the effect that I need to hurry up and get it treated because of it's size.  I almost wonder if she was looking at the right film?
Mona

[GM]

From what I understand AN's can be treated by GK up to 3 cm (cubed). 

The concern comes with a chance of post treatment swelling of the tumor after treatment.  Steroids can help out a bunch...   Mine swelled from 1.5 to 2.1 cm after treatment...(over a three year period), it is currently hanging out at 2.1 cm for about three years now.  My hearing and speech recognition is also hanging out at about the same rate.

Don't make any final decisions until you have all of your questions answered...and you're totally confortable with your decision. 

Gary

[Anomar11]

When people say they have a 1.1, 2.0 or 2.6 etc AN is everyone referring to the size of the tumor cubed - or the entire length of the thing in the earcanal and that which buts up against the brain - or just the part that leaves the ear canal into the CP angle (the ice cream part of the ice cream cone) I always thought that when people gave one number, they are referring to the longest length of it?  It seemed like the Mayo guys were looking more at the round part intracranial. Yikes

[GM]

They're talking about the cubed measurement...  for me its 2.1 cm.

[sgerrard]

Hi Mona,

Since you asked for advice, here goes.

I would post a question or two on the cyberknife forum: http://www.cyberknifesupport.org/forum/. The doctors, especially Dr. Medbery, are very familiar with both GK and CK, and can tell you what is what.

Without seeing your MRI, it is hard for people to know what the measurements really mean. With that in mind, you can also contact one of the CK forum doctors by email, and see if they will do a look - see at a mailed in copy of your MRI on CD. Often they will, without charge. They are experts, and can help you sort out what is going on. http://www.cyberknifesupport.org/about_the_doctors.html

There is some variation in which measurements are used when. For some doctors, once there is a blob in the CP angle, they don't count the bit in the canal anymore. Others will count it all. By all that I have read, you are still within the window for radiation treatment, unless it is too close to the brainstem.

While I would try to get it treated by next spring, I don't think you need to be in a hurry per se. For ANs, months is is fast, years is slow.

Best wishes,

Steve

[Kate B]

Hi Folks,

I'm pretty upset.  Just got off the phone with radio oncologist from St. Joseph's cyberknife who said she recommends surgery - that my AN is too large for radiation.  I looked at this same film at Mayo Clinic with the otolaryngologist who said it was on the smaller side???  I sure do feel like the rug has been pulled out from under me.  Any thoughts?  Thanks.  Mona

Did the radiooncologist have the films and the report to look at when making his recommendation? Did he say why he would not recommend radiation for the size of your tumor? 

When I looked into options, UPMC had accepted tumors up to 3 cm for GK.

Typically a small tumor is 1.5 cm or less...mid size is up to about 2.9 cm and large is over 3 cm...those are general guidelines.

Also, Kathleen is correct in stating that this is the most trying time...searching out treatment options and receiving mixed messages...Because there is no one right way to treat these tumors, be prepared for varying opinions.  At some point, you will get the information necessary to have a comfort level in the right decision for you.  Then it is moving forward knowing that you have made the best decision for you using the best information at hand.

[Jim Scott]

Mona:

You have good reason to be frustrated.  Conflicting opinions from medical doctors who specialize in acoustic neuroma treatment, be it surgery or radiation, is exasperating.  These are the people you're supposed to rely on to help you make a sound treatment decision - and they can't agree!

I have no medical degree but I will submit the suggestion that the exact location and angle of your tumor may be what is skewing the doctors opinion regarding radiation.  You need to find out the exact reason for the St. Joseph's oncologist's decision that you need surgery instead of radiation.  Of course, seeking further medical opinions from supposed experts is mandatory, now.

As others have noted, when making a final treatment decision, its imperative that you feel comfortable and secure with your choice of treatment method, doctor and facility.  Unfortunately, through no fault of your own, you apparently have a way to go .  I wish you an early resolution to this dilemma. You know we'll help in any way we can - just ask.

Jim

[mk]

When people say they have a 1.1, 2.0 or 2.6 etc AN is everyone referring to the size of the tumor cubed - or the entire length of the thing in the earcanal and that which buts up against the brain - or just the part that leaves the ear canal into the CP angle (the ice cream part of the ice cream cone) I always thought that when people gave one number, they are referring to the longest length of it?  It seemed like the Mayo guys were looking more at the round part intracranial. Yikes

It depends on the doctor. Some refer to the longest dimension (i.e. including the part that is inside the ear canal). When this is taken into account, the measurements can sound huge. However the portion inside the IAC does not contribute to the volume. I have asked this question many times to the Cyberknife forum and my doctors and it seems that the consensus is that for radiation they only take into account the dimensions of the portion that is on the CP (the ice cream part, mmm. my daughter would have liked this analogy).
Another thing that you should have in mind is that in reality it is the volume that counts. This is how the Japanese do it in their publications. The volume can be calculated using the formula: 3.14 * (diameter1*diameter2*diameter3)/6.
As others have indicated, based on the dimensions of your AN you are well within the radiation limits. However there are other issues like proximity to the brain stem that must be considered as well, so this is why it is important to get many opinions and clarify the reason why the radiation oncologist made this recommendation.

Marianna

[Anomar11]

Once again, thanks much for your kind replies/advice.  I sent MRI's off to a few more doctors.  The doc from St. Pauls did look at my MRI when she stated it was too large and I needed to do something soon.  When looking at the film at Mayo, I stated I thought it would be medium size, and he said it was a small medium.  When I asked if it was pressing on my brainstem he stated it was not pressing into it, just up against it???  Mona

[MAlegant]

Mona,
I received virtually the same advice from all the doctors I saw (surgery, not radiation, due to size), although one doc thought radiation would be ok.  I obviously went with the surgery and the tumor turned out to be larger than thought so it was a very good decision.  I was extremely disappointed not to be a candidate for GK but as I said, it turned out just fine.  Also, each doctor had his own idea about how big the AN was, so I'm not sure how accurate they can be, even with contrast-assisted MRI's. It was 2 cm, then 3 cm and then it was even bigger.

Good luck and keep us posted.
Marci