Author Topic: residual/recurrent tumor!  (Read 8445 times)

dpericoni

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residual/recurrent tumor!
« on: February 02, 2007, 05:58:50 pm »
A year ago I had my tumor removed. It was 5mm by 8mm. I was told it was all gone.

Yesterday, I received my year follow-up MRI results.

IMPRESSION:
Post surgical changes are seen involving the left internal auditory canal. There is fat-packing material superior to the canal. However, there is a persistent 5 x 3 mm area of enhancement within the fundal portion of the internal auditory canal distally and inferiorly. This is consistent with a residual tumor versus recurrent tumor. The study with and without contrast is otherwise unremarkable.


Now, I am waiting for my neurologist to look at the images.

Does anyone have any experience with these kind of results?

Darlene

ppearl214

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Re: residual/recurrent tumor!
« Reply #1 on: February 02, 2007, 06:09:30 pm »
Darlene,

Can you call your surgeons office and either ask for a copy of the Op notes (which we are entitled) and/or speak to the surgeon to discuss that residual remains and their thoughts on treating the residual?

Hang in there!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

dpericoni

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Re: residual/recurrent tumor!
« Reply #2 on: February 02, 2007, 08:50:55 pm »
Thanks for the reply.

I am waiting for a call back from my neurologist's office on Monday. I find it hard to believe that the radiologist doesn't know what he is talking about even though these tumors are rare.

Darlene

pearchica

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Re: residual/recurrent tumor!
« Reply #3 on: February 13, 2007, 06:16:52 pm »
Perhaps scar tissue (oops I almost typed scare tissue as a freudian slip)!  I'm sure you will be fine once you talk with the doctor on Monday.  Good luck- Annie
(My first surgery consult stated he would debulk my tumor then treat the rest with radiation to preserve the facial nerve).  And you may just want to fax the written results to the neurologist and have him give you a call back... Not everyone knows how to read these things.  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Omaschwannoma

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Re: residual/recurrent tumor!
« Reply #4 on: February 21, 2007, 08:13:13 am »
A year ago I had my tumor removed. It was 5mm by 8mm. I was told it was all gone.

Yesterday, I received my year follow-up MRI results.

IMPRESSION:
Post surgical changes are seen involving the left internal auditory canal. There is fat-packing material superior to the canal. However, there is a persistent 5 x 3 mm area of enhancement within the fundal portion of the internal auditory canal distally and inferiorly. This is consistent with a residual tumor versus recurrent tumor. The study with and without contrast is otherwise unremarkable.


Now, I am waiting for my neurologist to look at the images.

Does anyone have any experience with these kind of results?

Darlene
I can relate to your situation on one-year follow up.  The thought of another surgery ? is well dare I say, "Worse as you are no longer ignorant."  I hope by the time you have read this, your answer has come and is in your favor!  Apparently reading the MRI's after surgery can be challenging and one can only hope it is in the patients favor.  After my one-year "mess" up I have decided that if "it" shall return it will show up in more symptoms or the next MRI.  One thing for sure, most AN's are slow growing giving one time to breathe. 

My one-year follow up was a disaster in more ways than one.  It took 7 weeks to get a doctor on the phone to give me my diagnosis.  Once my MRI was taken I waited 2 weeks without a call from the surgeons office.  I became pro-active, called inquiring about the MRI's and results.  Turns out the place I had my MRI's taken at did not follow script order to mail films to the doctor.  I asked doctor's assistant when I was going to be notified of this--thank God I called!  Returning to the place I had my films at I acquired the radiologists report and it read pretty much the same as yours.  I was shocked and for the first time ever I had a very long and loud cry.  The thought of going through this all over again....!  After a few days passed, the office calls telling me the films arrived and "when the doctor gets into the office, he will call you back."  I gave him one week and heard nothing and this began my everyother day of phone calls to his assistant only to get the same canned answer.  Frustrated with this I called my other surgeon to ask that he take over.  A few days passed w/o word from him, so I decided to email the first surgeon asking how long it will take before I hear from him.  His response was instantanious!  Miracle!  It was also rude, short and basically explaining he was busy with other patients more serious and that he was waiting to meet with neuro-radiologist to read films, but since I emailed and showed impatience he was cancelling the meeting and would pass everything on to my other surgeon!  WOW!  Talk about taking your toys with you and leaving when you don't like the game.  What an empty feeling.  Felt very abandoned to say the least.  I finally heard two weeks later from my other surgeon.  He apologized for his colleague and began to give me my one-year MRI follow up report. 

Turns out what is seen on the MRI is the fat used to pack the empty space made by removing the tumor.  WHEW!  I felt better, unfortunately I missed out on a wonderful 50th birthday celebration due to the miscommunication regarding return of my tumor.  Turns out my kids had given me a birthday gift they remembered I said I wanted prior to diagnosis that when I turn 50--to jump out of an airplane.  My husband cancelled my birthday and put off making reservations to leave town as we were thinking my tumor had returned.  He even stayed off the phone for one week so I didn't miss my doctors call, which cost him $$ as he uses the phone for business.  Of course I could not vent my frustrations to my doctors as they heaped upon me the fact that there were more serious patients to deal with.  I certainly agree with them, but....

My one-year mess up was not over as I went to see a neurologist in town to help me with my headaches.  He wanted to see my MRI's and one quick look at mine he without a doubt said my tumor had returned.  I wasn't shocked, but understood how the fat can be mistaken for the tumor so I told him a neuro-radiologist had already seen them.  To which he said one doesn't need such a specialist to know my tumor had returned.  I insisted he show me what he was seeing and then the shock hit me.  So another MRI was taken and read by a different neuro-radiologist.  Of course, this 2nd MRI report stated the "brightness" is consistent with the fat plug.  SIGH!  From December 28, 2005 until May, 2006 my husband and I had been under tremendous stress.  Now one can understand why I call this my one-year mess up! 

I have surrendered to this AN, it's post-surgery symptoms and the medical profession.  I have better things to do than give this anymore of my attention.  My last doctor visit I told my husband the next time I have to see another doctor will be because I'm unconscious!  Letting go is the best medicine for me.  I am happy to respond to others' concerns regarding their situation knowing it can help.  My one-year "mess" up is extreme and I know there is another story on the other end of this spectrum.  It is up to us to find the balance between the two. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

ppearl214

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Re: residual/recurrent tumor!
« Reply #5 on: February 21, 2007, 09:10:51 am »
Karen, I love your energy and attitude... thank you for sharing your situation with us.  I am curious if what they saw on the 1 yr MRI is a residual and not a completely new growth.  Did your surgeon note to you that he had either removed the entire AN or if he had not choice but to leave a residual due to "stickiness" of the growth?  In my reading posts here, that seem to be rather common that residuals are left behind.  Always good to know that residuals can be treated by radiation or surgery to keep those suckers in check.

I'm sorry the birthday did not turn out as hoped... but I have a sneaky feeling you all will make up for it.  I'm sending you much white light and know I'm sending huggles as well. Hang in there!

Phyl

I can relate to your situation on one-year follow up.  The thought of another surgery ? is well dare I say, "Worse as you are no longer ignorant."  I hope by the time you have read this, your answer has come and is in your favor!  Apparently reading the MRI's after surgery can be challenging and one can only hope it is in the patients favor.  After my one-year "mess" up I have decided that if "it" shall return it will show up in more symptoms or the next MRI.  One thing for sure, most AN's are slow growing giving one time to breathe. 

My one-year follow up was a disaster in more ways than one.  It took 7 weeks to get a doctor on the phone to give me my diagnosis.  Once my MRI was taken I waited 2 weeks without a call from the surgeons office.  I became pro-active, called inquiring about the MRI's and results.  Turns out the place I had my MRI's taken at did not follow script order to mail films to the doctor.  I asked doctor's assistant when I was going to be notified of this--thank God I called!  Returning to the place I had my films at I acquired the radiologists report and it read pretty much the same as yours.  I was shocked and for the first time ever I had a very long and loud cry.  The thought of going through this all over again....!  After a few days passed, the office calls telling me the films arrived and "when the doctor gets into the office, he will call you back."  I gave him one week and heard nothing and this began my everyother day of phone calls to his assistant only to get the same canned answer.  Frustrated with this I called my other surgeon to ask that he take over.  A few days passed w/o word from him, so I decided to email the first surgeon asking how long it will take before I hear from him.  His response was instantanious!  Miracle!  It was also rude, short and basically explaining he was busy with other patients more serious and that he was waiting to meet with neuro-radiologist to read films, but since I emailed and showed impatience he was cancelling the meeting and would pass everything on to my other surgeon!  WOW!  Talk about taking your toys with you and leaving when you don't like the game.  What an empty feeling.  Felt very abandoned to say the least.  I finally heard two weeks later from my other surgeon.  He apologized for his colleague and began to give me my one-year MRI follow up report. 

Turns out what is seen on the MRI is the fat used to pack the empty space made by removing the tumor.  WHEW!  I felt better, unfortunately I missed out on a wonderful 50th birthday celebration due to the miscommunication regarding return of my tumor.  Turns out my kids had given me a birthday gift they remembered I said I wanted prior to diagnosis that when I turn 50--to jump out of an airplane.  My husband cancelled my birthday and put off making reservations to leave town as we were thinking my tumor had returned.  He even stayed off the phone for one week so I didn't miss my doctors call, which cost him $$ as he uses the phone for business.  Of course I could not vent my frustrations to my doctors as they heaped upon me the fact that there were more serious patients to deal with.  I certainly agree with them, but....

My one-year mess up was not over as I went to see a neurologist in town to help me with my headaches.  He wanted to see my MRI's and one quick look at mine he without a doubt said my tumor had returned.  I wasn't shocked, but understood how the fat can be mistaken for the tumor so I told him a neuro-radiologist had already seen them.  To which he said one doesn't need such a specialist to know my tumor had returned.  I insisted he show me what he was seeing and then the shock hit me.  So another MRI was taken and read by a different neuro-radiologist.  Of course, this 2nd MRI report stated the "brightness" is consistent with the fat plug.  SIGH!  From December 28, 2005 until May, 2006 my husband and I had been under tremendous stress.  Now one can understand why I call this my one-year mess up! 

I have surrendered to this AN, it's post-surgery symptoms and the medical profession.  I have better things to do than give this anymore of my attention.  My last doctor visit I told my husband the next time I have to see another doctor will be because I'm unconscious!  Letting go is the best medicine for me.  I am happy to respond to others' concerns regarding their situation knowing it can help.  My one-year "mess" up is extreme and I know there is another story on the other end of this spectrum.  It is up to us to find the balance between the two. 
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Dealy

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Re: residual/recurrent tumor!
« Reply #6 on: February 21, 2007, 04:01:35 pm »
Darlene and Karen- Yes can relate when one who reads your MRI and says-hey you got a new lesion starting-and you think-oh my gosh-not again. However someone else comes along and says-no that is fatty tissue. Boy do we all want to believe that. If you read some of my posts-I had left sideed surgery 18 years and now have a right sided AN that I had treated with radiation. Of course I am an NF2. Then some radiologist where I have my MRI done says you got a new lesion developing on the Left now. WHAT-ARE YOU NUTS-THAT CAN'T BE. Well anxiety and everything else-I will take the word of my surgeon and 2 noted Neuros who say no this is fat tissue that we used to stuff the hole with. MAN some doctors can cause you stress and I do not need any more than I am dealing with now. Best wishes from a fellow ANer even though I have the distinction of being an NF2. Thanks-Ron

Omaschwannoma

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Re: residual/recurrent tumor!
« Reply #7 on: February 22, 2007, 07:15:48 am »
Hi Ron,

Just curious as to your diagnosis of NF2.  Did you know you had NF2 all along?  Is NF1 the same as schwannoma/acoustic neuroma?  I was under the impression because they don't see another tumor contralateral to the first means you don't have NF2. Sounds like one NF2 tumor can show up at anytime and not necissarily two at the same time.   
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Dealy

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Re: residual/recurrent tumor!
« Reply #8 on: February 22, 2007, 08:03:01 am »
Well-I am not an expert on NF2-but I do know that I have had two now-and I will never know if I had the one on the right 18 years ago because I threw my MRI's away and no one has record of the first MRI's 18 years ago. So I guess it either grew like heck over 18 years- was missed in the first one-or just plain brand knew. That is why eveyone should always have a current MRI-because I never knew or suspected another one coming or even that I was considered an NF2. Thanks for asking-Ron