Author Topic: No growth ..Now what ?  (Read 6721 times)

rm516

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No growth ..Now what ?
« on: March 14, 2010, 09:22:45 pm »
I had my 6 month (actually 7th) MRI, No growth, still <2.7 Cm diameter, as in last 2 MRI's.
 Last two reports said "meningioma" this time they think it can be "vestibular schwannomas",  as no Dural  tail was visible.
Meanwhile, as usual I have no symptoms except for occasional ringing and fullness in ear.
Maybe my it’s perception that my hearing is better than 6 months ago...Next hearing test will tell the story.
My last Neuro-surgeon wanted me wait till a growth rate (if any) is established or onset of any symptoms,
Who should I go to first for follow-up, ENT doc or Neurologist or Neuro surgeon?
Raj
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

sunfish

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Re: No growth ..Now what ?
« Reply #1 on: March 15, 2010, 07:00:55 am »
I'm new here, but I've read, read, read about all this over the past 2 months.

That's a pretty good sized tumor to watch and wait.  I would be wanting to get multiple opinions from neurosurgeons (sounds like you may have done this), regarding your options.

Seems like, right now, it's still small enough for radiosurgery, but if it gets much bigger, that option may no longer be available.

I'd be talking to neurosurgeons who are knowledgeable/practice both traditional and radiosurgery (Gamma Knife, Cyberknife).

I would call both my neurosurgeon and ENT office to get firm plans for followup, as this is critical in your case.  Again, this is just my opinion.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

ombrerose4

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Re: No growth ..Now what ?
« Reply #2 on: March 18, 2010, 04:35:43 pm »
I am also surprised that at that size tumor, you are wait and watch. My tumor was about 2.4 by 2.2cm, and my doctors did not feel that waiting was an option at all. Maybe you should go for a 2nd opinion at this point. Good luck!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

leapyrtwins

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Re: No growth ..Now what ?
« Reply #3 on: March 18, 2010, 04:42:38 pm »
Okay, I'll be #3.  An Acoustic Neuroma of 2.7 cm isn't usually something you watch & wait.

When I was diagnosed with my AN, the MRI showed it was 1.5 cm.  When I met with my neurotologist to discuss treatment options, he told me radiation or surgery.  He also said that I could afford to wait for a "time" but not too long.  It's good that I listened to him, because by the time I decided on surgery approximately 6 weeks later, my AN had almost doubled in size.  While this isn't the norm, it does happen.

I'd go for a second opinion.  If for no other reason that by the time you have your next MRI your AN may be larger than 3 cm and radiation will no longer be a treatment option for you.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Larry

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Re: No growth ..Now what ?
« Reply #4 on: March 18, 2010, 05:45:19 pm »
Agree with Jan,

get a second opinion. AN's can go into massive growth spurts. I was in watch and wait with my regrowth for 3 years. Then in one 6 monthly burst, it doubled. It was still small enough for radiation treatment so i went for it. Another doubling and the risks would be far greater. The fullness in the ear sounds like a first sign to hearing loss. Once lost, it never returns. You still have options but get a second opinion and then ask about the surgery and radiation options available to you.

cheers


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

rm516

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Re: No growth ..Now what ?
« Reply #5 on: March 18, 2010, 07:46:46 pm »
My nuero Surgeon's report excerpt:

"" Since he has hardly any symptoms attributable to this, we could continue observation and repeat the MRI in six months.
Consider radiation treatment for this tumor, which would be aimed at preventing further growth of the tumor. And lastly the option, which would be preferable for his age and size of the tumor, would be to resect the tumor surgically with an attempt to preserve the hearing and the facial nerve. The pros and cons of each of these were discussed. The potential risks of the operation include hearing loss, facial paralysis or weakness, dizziness, ataxia, weakness, bleeding, cerebrospinal fluid leakage, infection, etc. The main risks, however, with this operation are related to the hearing loss, the dizziness, and the facial paralysis. I explained to him that the larger the tumor the higher the risk of any of these deficits occurring. At this point, he is functioning very well and he has hardly any complaints. We will continue monitoring it and repeat the MRI in six months' time. If he has any other symptoms in the meantime he will let me know. "

So there is no growth for 1 year , may be it stopped growing 5 -10 years ago ( I don't know).. May be it may shrink like Derek or Mickey.. (I wish)
I am seeing a ENT surgeon tomorrow, lets see..
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

Mickey

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Re: No growth ..Now what ?
« Reply #6 on: March 19, 2010, 07:39:22 am »
Hi rm516! Your situation sounds very interesting. Your going to have to monitor very closely because of the size of your tumor. Mine is half the size and I am approaching 62 now (stable). Derek`s was closer to your size and he is 65 (his reduced). Remember all the guidelines we have been following in good health. This will benifit you no matter what. While I admire your courage, I am a realist who does believe in ALL the treatments where it applies. Keep the faith and wishing you the best. Mickey

rm516

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Re: No growth ..Now what ?
« Reply #7 on: March 19, 2010, 07:17:03 pm »
Mickey thanks for the kind words and encouragement. (i need that)..I hope to follow yours and Derek's footstep in diet supplements, exercise etc.
My appointment with ENT was today, again he emphasized close observation and repeat MRI in 6 months. He mentioned that few of his patients (with AN & Meningoma) have been on W&W over 3 -4 years (no size was mentioned)
 He asked me get a new hearing test ( I think, my hearing is  better, because i have hardly any distortion of voice by Phone on the RT. side). We will see...
Another  thing, this the latest scientific excerpt: (finding from a board member )
"Herpes and acoustic neuromas: Is there a cause and effect to observe?
Craig G. Burkhart *
University of Toledo College of Medicine, Toledo, OH, USA
Ohio University College of Osteopathic Medicine at Athens, 5600 Monroe Street, Suite 106B, Sylvania, OH 43560, USA
a r t i c l e i n f o
Article history:
Received 8 January 2010
Accepted 17 January 2010

Indeed,the 1991 Consensus Conference of the National Institutes of
Health recommended surgical excision as the treatment of choice
for symptomatic acoustic neuromas. Aggressive treatment has
been promoted by authors who have drawn an overpessimistic
prognosis by suggesting that they eventually cause clinically significant
problems, then death if not treated [2].” In truth, most tumors
cause few symptoms besides depressed unilateral hearing
loss; of note, both surgery and radiotherapy cause total loss of
hearing of the affected nerve as well as potentially significant other
risks.

Observation is the standard in many countries including Japan
and Canada [3,4]
. Moreover, observation is suggested as appropriate
therapy by the Acoustic Neuroma Association, the American
Hearing Research Foundation, and meta-analysis with suggested
treatment algorithm [5].
Although some countries are more surgically oriented, observation
should be a strong consideration in all patients regardless of
age or ability to withstand surgery. The reasoning for observation
begins by realizing that acoustic neuromas are benign tumors
and only produce symptoms, besides decreased hearing, if they enlarge.
On point, most acoustic neuromas grow very slowly. In one
study, 85% of patients had no change in tumor size after over 4
years of follow up [6]. Bederson et al. [7] actually reported 6% of
acoustic neuromas decrease in size with time.
Acoustic neuromas are much more common than reported, as
0.8–2.7% of cadavers reveal asymptomatic intracanalicular acoustic
neuromas [8,9] Thus, most afflicted individuals do not have surgery
or radiation therapy, as these individuals just assume that
they have ‘a bad ear,’ and live with it......
Unless a neuroma grows producing other symptoms due to
compression, the risks of surgery seem way out of proportion to
any perceived benefits. As stated by Flint [15], ‘‘delaying surgery
until required by symptoms or tumor growth does not result in
more morbidity.” Additionally, better treatments may be on the
horizon, including chalcone derivatives and anti-herpetic
prophylaxis.

 
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

mk

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Re: No growth ..Now what ?
« Reply #8 on: March 19, 2010, 08:02:19 pm »
I have been following this discussion and here is my two cents worth, having been diagnosed with an AN of similar size and with no symptoms (other than mild facial numbness), 2 and a half years ago.

At 2.7 cm you are borderline for radiation. One growth spurt, or even average growth will put you out of the range that is acceptable for radiation. So, if you are considering radiation, you should go ahead and do it (noting also that as a general observation, the best your hearing is before radiation, the better the chances to retain at least some afterwards).
On the other hand, if you are considering surgery as your chosen form of treatment, then it wouldn't hurt to wait, since you may not be better off with surgery in terms of symptoms, of course IF and only IF your doctors think that a bit of extra growth would not put you in danger (no serious brainstem compression, distortion etc.).

It is true that W&W is the recommended approach in many countries, like Europe, Canada etc., but usually for smaller, and for the most part intracanalicular ANs. 2.7 cm is on the large side for W&W, at least in Canada.

So my advice is that you should first decide on your preferred form of treatment, and based on this you can chose your path forward.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

ombrerose4

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Re: No growth ..Now what ?
« Reply #9 on: March 19, 2010, 08:47:50 pm »
can you send the link to the actual article you posted? I see one of my doctors was mentioned. Thanks!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

rm516

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Re: No growth ..Now what ?
« Reply #10 on: March 19, 2010, 09:15:09 pm »
Thanks Mk.
All the surgeon's (3) suggested: No to radiation
& consensus was "surgery" - Retrosigmoid approach (if & when required)
There is a minimum  IAC involvement (faint line in MRI)
2 of 3 surgeons think , I have Meningioma & gave me > 70 % chance of preserving hearing on RT side.
One side of my mind says  "take the risk of Surgery"  & other side says  "Wait & Watch" (may be it will shrink)..
May be there is "more improvement on horizon"
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

rm516

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Re: No growth ..Now what ?
« Reply #11 on: March 19, 2010, 09:27:41 pm »
ombrerose4 as per your request

Link was posted by Esperanza on Mar. 5, 2010
http://anausa.org/forum/index.php?topic=12007.msg138398#msg138398
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.