ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: ANSydney on October 23, 2017, 03:55:40 am

Title: New Study just released
Post by: ANSydney on October 23, 2017, 03:55:40 am
New study just released in the last couple of days. https://www.ncbi.nlm.nih.gov/pubmed/29048255

For those in wait and see, they had the same quality of life as the general population and 81.5% of patients had no tumor growth!

Adds credence to those trying to promote observation ;-)

Title: Re: New Study just released
Post by: Muffin on October 31, 2017, 07:04:02 pm
I just read these encouraging words. That is what I need now.  I got into the BAHA discussions and other things I shouldn’t have seen and it saddened me.  I know I am new to this and will adjust, but I am still adjusting and some things people have gone through....well, it breaks my heart..and if I am going to be totally honest, scares me a bit.  Is it safe to say that one fourth of these beasts quit growing in the second year? I think I need to post figures on the fridge!  I haven’t even made it to a year. My hearing was partially gone in June.  So not even six months.  It can grow quite a bit in the first two years, I suppose. How much hearing do you still have ANSydney?  I worry about waiting too long. I am not crazy about facial paralysis.  If you could only know and not guess......  Some days are just easier than others.
Title: Re: New Study just released
Post by: ANSydney on October 31, 2017, 08:21:26 pm
Muffin, fear is the path to the dark side…fear leads to anger…anger leads to hate…hate leads to suffering (with apologies to Yoda).

I've got another very recent abstract for you that has only appeared in the last week or so; https://www.ncbi.nlm.nih.gov/pubmed/29066124

"Local control for SRS versus SRT was 94% versus 87% at 5 years and 90% versus 85% at 10 years"

So after 10 years, not much difference between radiosurgery and natural progression. Looking at the trend, after 15 or more years ...

Put these two recent studies together and there really is no need to intervene unless there is a compelling reason. The compelling reason would be MRI evidence of continued growth that is not slowing down or sustained symptoms that are related to the AN. Remember, just because you have an AN does no mean you're immune to any other ailment over the years.

By the way, rodneyd noticed increased symptoms before his MRI showed shrinkage. So it looks like a growing tumor or an shrinking tumor may cause new symptoms. That is, an increase in symptoms could mean a changing (for better or worse) tumor size.

These two articles add credence to Battaglia's findings https://www.ncbi.nlm.nih.gov/pubmed/16868519 just over a decade ago. The conclusion is reproduced below:

"The average growth rate of the untreated tumors was 0.7 +/- 1.4 mm/yr. Eighty-two percent grew less than 1 mm/yr, whereas 18% grew equal to or more than 1 mm/yr. Thirteen percent grew more than 2 mm/yr, with growth being noted at an average of 2.2 years after diagnosis. This represents an 87% control rate if tumor control rate is defined as less than 2-mm growth/yr. Meta-analysis indicates that tumor control rates range in the radiosurgical literature from 86% to 100%. The mean follow-up periods in the radiosurgical literature are generally not reported. Tumor control is not uniformly defined. Based on the results of this study, there is no discernable significant difference between growth patterns of untreated acoustic neuromas and those treated radiosurgically. To establish a significant difference, longer-term follow-up studies with larger sample sizes and tumor control rates are needed. Tumor control should be defined as zero growth."

I think you already know that the best way to preserve hearing for as long as possible, is to do nothing.

My hearing has become worse. I get a formal hearing test done every month. The audiologist is walking distance from work and he gives me a really good price. I've still got 90% speech discrimination but my PTA has dropped from 30 dB in January 2014 to 36.7 dB in July 2016 to, until a couple of  months ago it was down to 41.7 dB. The last couple of months it has dived to 45 dB. I don't know how to stop my hearing deterioration from progressing, but I do know how to speed it up!

On a practical level, I don't have a harder time hearing in crowds today as I did four years ago.

I've probably already asked you this question, but just in case I will ask again. The most important question is, have you got your MRI on CD and have you looked at and measured your tumor? If not, do it. (Far better than looking at BAHA discussions!)

We look forward to your followup MRI results.
Title: Re: New Study just released
Post by: Joan Mingo on January 13, 2018, 07:41:43 pm
Doesn't seem to matter the size in relation to hearing loss, for me anyway. I have q4x4mm tumor but badically have no hearing in affected ear. Only 12% word recognition. So, for me wait and watch is perfect. Haring is basically gone so only concern will be growth to the extent of reaching brain stem. Also have balance issues which are difficult and very tiring on the body.
Good luck and good health to all!