Newly diagnosed and choosing to watch & wait

[Nancy Drew]

Sheryl,

Congrats on surviving breast cancer.  I admire you for W&W for so long.  I was on the list for about 2 1/2 years.  I was fine with it until the AN started growing and symptoms appeared.  I am 2 1/2 weeks post GK now, and I am hitting a few bumps in the road.  All in all, life is good!  Cindyj on our board here is also a breast cancer survivor, and she is having AN surgery at House in LA today.  You breast cancer survivors are tough ones!!!  Best wishes as you continue to W&W.

Nancy

[NancyMc]

Hi, Sheryl,
Sorry, got ya beat . . . wait and watch since September '01.  But just got word that my 11 mm by 19 mm tumor is now 19 mm by 19 mm with cystic spaces.  So, you'll be back at number one soon.  I have an appointment at Mass Eye and Ear on Monday with Michael McKenna who has been following my neuroma for over seven years.
I had always planned to go to Johns Hopkins for FSR, but my very recent research suggests that cystic tumors respond to radiation with potentially dangerous swelling.  So, pretty nervous about the whole thing, but at least my children are grown and just graduated from or attending college.
I'm curious about recovery times, getting back to normal life post-op, what I can expect, assuming all goes as well as I hope.  Will I need much assistance on a daily basis after returning home from the hospital?
Thank you.
Nancy Mc
New Hampshire

[leapyrtwins]

Sheryl & Nancy Mc -

you guys both impress the hell out of me.  It's all I could do to wait for the 6 weeks between my diagnosis and my surgery 

Patience is not one of my virtues 

Jan

[Sheryl]

Hi Nancy Mc - I'm just south of you right now on Cape Cod.  Hubby and I are able to live the life of "snowbirds" and will be off to Florida on Wednesday.  My doctors are in Florida as we lived there previously for eight years (originally from Massachusetts and missed it).  His doctors are at the Brigham and B.I. (we follow in Phyl's footsteps - you'll get to meet her some time on this board). 

Everyone is different when it comes to treatment and recovery.  I feel if you have done your research, are happy with your doctor (s), and keep a positive attitude - you'll get through this and be able to deal with problems (if any). 

I'm hoping that the story I heard about being older and these types of tumors growing more slowly is true as I am just about ready to collect my first Social Security check!!!

You are in good hands at Mass Eye and Ear - good luck and keep us informed.
Sheryl

[Mickey]

Hi Sheryl! My Dr. is currently holding very many patients on wait and watch. I personally know 3 patients 2 who are in their 10th year a 1 who`s going on 18 years. I also just read an Italian report where 8 patients were followed 62 or better waiting and watching with 6 having no more growth and 2 very minimal with no one requiring any intervention. Basicly what I`m saying its definately a very logical course of action. I`m W+W so far for 3 mri`s (stable) and my Dr. now says to go yearly. I`m 60. Keep the faith and best wishes!
 Mickey

[Derek]

Hi, Sheryl,
Sorry, got ya beat . . . wait and watch since September '01.  But just got word that my 11 mm by 19 mm tumor is now 19 mm by 19 mm with cystic spaces.  So, you'll be back at number one soon.  I have an appointment at Mass Eye and Ear on Monday with Michael McKenna who has been following my neuroma for over seven years.
I had always planned to go to Johns Hopkins for FSR, but my very recent research suggests that cystic tumors respond to radiation with potentially dangerous swelling.  So, pretty nervous about the whole thing, but at least my children are grown and just graduated from or attending college.
I'm curious about recovery times, getting back to normal life post-op, what I can expect, assuming all goes as well as I hope.  Will I need much assistance on a daily basis after returning home from the hospital?
Thank you.
Nancy Mc
New Hampshire

Hi there Nancy...

Sorry to learn that you are about to relinquish your 'watch & wait' status...I am only 5 months behind you re having been diagnosed in February 2002.

Just curious to know at what stage(s) following your diagnosis did your growth rate become apparent...and also, as my AN has a cystic component which has apparentlly partly dispersed over the last couple of years, your comment relevant to your recent research concerning alleged dangers of swelling applicable to the radiation of cystic ANs is of particular significance and it would be appreciated if you could provide us with the origin of your research.

Regards

Derek

[sgerrard]

Hi Derek (and Nancy),

I posted a question on the CK forum about cysts, and Dr. Medbery gave a quick reply. While he mainly does CK, he also has experience with GK, and probably FSR - he has been around a while. Here is what I asked, and his reply:

Me: "What effect does the presence of a cyst or cysts have on radiation treatment of an AN? The particular case I am asking about is a 2 cm AN, with "small cystic spaces in the tumor." Is swelling a much bigger problem when there are cysts? Is it riskier? Thanks."

Dr. Medbery: "I don't think that matters. Occasionally, there are large cysts and some centers will surgically drain the cyst before treating."

I am also interested to read that you had a cystic component which has partly dispersed. Watch and wait can work for cysts too, I guess.

Steve

[NancyMc]

Hi, Derek.
(My son's at U of Edinburgh for four years studying Scottish History.  I love it over there!!!  Where are you?)
Anyway, Steve asked the same.  I cannot remember where I read about cysts swelling post radiation.  I was googling around.  Sorry.  I didn't know I had small cystic spaces at the time, just tripped over the information after I learned my tumor had grown from 11 by 19 to 19 by 19 in a year.  It had only grown 2 mm in the six years previous.  Then I got the radiology report and read the cyst bit.
I'll ask Dr McKenna at MEEI tomorrow and get back to you.
Nancy

[Derek]

Steve / Nancy Mc...

Thanks Steve for raising the aspect of radiosurgery involving the presence of cystic components within the AN with the Docs over on the CK board. The relevant response endorses the opinion of my neuro consultant who had previously indicated that such a factor did not present any particular additional problems when the AN was treated via radiosurgery.

Nancy...I certainly would be interested to read the article that you referred to if you are able to locate the reference. It is most unfortunate that after some 6 years without any growth your AN decides to 'flex it's muscles' and has a 4 year spurt within a 12 months period!
With a name like McDonald and your son studying Scottish history at Edinburgh Uni you appear to have Scottish ancestory? I live at Tynemouth on the north east coast of England which is  about 100 miles from Edinburgh and only  a 2 hours drive away. Great place to visit isn't it!

Regards

Derek

[Dawn]

I too am newly diagnosed...like exactly 1 week.  In that one weeks time I have had 3 opinions as I work with Neurosurgeons and then was referred to hospital in NYC where I was given hearing test and will be going for the ENG test next week.  I was told I am lucky that it was found early b/c it is small in size right now and that gives me time to think about my options.

What I liked about your statement is that i feel the same as you.  I just want it out!  But I too have young children and the same symptoms.  Some vertigo and occasionally a high pitched ringing in my ear. 

This forum has helped a lot and I'm on here everynight reading up on this.  The thing I find very confusing is that it seems that every single person has different feeling, responses or post surgical problems. 

I'm hoping after my test next week if it comes back ok then I'm schedule for a follow up MRI in March, so I'm a "Wait and See" as well which I'm not sure how I feel about but I will wait till March and decide what to do after that, in the mean time I continue to do research and started with vestibular training exercises.

I wish everyone the strength to make the right decision and pray it all works out for the best.

[sgerrard]

The thing I find very confusing is that it seems that every single person has different feeling, responses or post surgical problems. 

If it is any consolation, you have got it just right. Everyone's experience does vary in it's own special way, making comparisons that much harder to do. From initial symptoms, to patient preferences, to treatment results and recovery, no two AN's seem to be exactly alike.

I am waiting for March as well. With radiation, you also get to play a little watch and wait after treatment, so to speak, to see how it all turns out.

Steve

[suboo73]

Dawn,

Hi there.  I certainly understand your confusion, as i am newly dx as well.  The really weird thing is that my sister was dx just 6 months prior to me (which is what prompted me to see another ENT!) - Even as sisters, we cannot really compare our situations, just discuss the various options as these wonderful people do here on the support site!  I am in w & w until next MRI in April 09, while learning treatment options, too. - Steve's words are reassuring.  (Thanks, Steve!)

I pray for strength and courage every day as well - so thank YOU for those special thoughts and prayers. 
One way or another, we are all in this together!
--------------------
Julie - i am so glad you found this site, too!
The people here are wonderful, and they help me maintain my sanity, especially when i feel i have no one else to talk to.

Dawn & Julie ---I look forward to continue reading your posts.

My best to all.

Sue