Do all watchers and waiters eventually get treatment-even if its years later?

[HeidiC]

Do all watchers and waiters eventually get treatment-even if its years later?

I ask because, while I know treatment has its risks, waiting does as well.  If you eventually have treatment anyway then why wait and risk complications both from growth of the tumor and a tougher treatment? 

I'm not questioning anybodies treatment choices because I know that is a very personal choice.  I  just want to understand how you came to that choice and that info along with all my other research and dr visit will help me to come to a decision. 

~Heidi

[Jim Scott]

Heidi ~

I'm not a 'watch-and-wait' AN patient but I can tell you that although it's rare, sometimes ANs stop growing spontaneously.  The yearly MRI tracks the growth, if any and most doctors will recommend surgery or radiation if the tumor shows any significant growth or changes.  Of course, the patients symptoms are a factor, too.  If someone doing 'watch-and-wait' develops more acute symptoms, they will usually be motivated to address the AN sooner, rather than later.  For many, surgery and/or radiation is daunting and, if it can be avoided, even for a few years i.e. until young children are in school, grown, etc, it makes sense, barring increased symptoms, to postpone it while 'watching' the tumor via annual MRI scans.  I would.

Jim

[CHD63]

Heidi .....

I agree with Jim ...... with one additional component ..... much depends upon a patient's comfort level in watching and waiting.  Some people simply cannot stand the anxiety of wondering whether the tumor is remaining stable or not.  Others are able to be diligent to monitor any change in symptoms between MRI scans and are very comfortable waiting.

Clarice

[Keeping Up]

Hello Heidi

A fair bit of long term research is available which indicates that about 65% of small IAC tumors show no to very limited growth over a 10 year period.  Larger tumors and tumors which extend into the CPA are less likely to not show growth.  Individuals may chose to seek treatment for other reasons such as balance/dizzy issues if no growth is noted.  Hearing preservation is a debatable point - once I find some conclusive GK/CK research (ie 10+ years)  to compare to the long-term W&W hearing preservation - my instinct is no significant difference even exists on that factor (the preservation of USEFUL hearing is quite low in both W&W and GK).  The individuals which do show growth are obviously encouraged to seek treatment.  Continuous follow-up MRIs are also required for W&W (similar time frames as GK).

I do have a Canadian and a UK study which show the lack of growth in small tumors over 10 years as well as hearing preservation rates in those same patients.  PM me if you are interested.  The 10 year review was about 3-4 years ago so I am eagerly awaiting the 15 year follow-up in the next couple of years. 

Ann

[Derek]

Heidi..

I am now approaching my 10th year in the conservative management (watch & wait) of my AN which upon diagnosis at age 58 was sized at 2.5cm and over the ensuing years has self reduced to 1.5cm. Other than total hearing loss on the affected side which occurred very shortly following diagnosis and which does not cause me any problems, I have no other symptoms. From a personal perspective the risks of morbidity associated with any of the intrusive treatment options were too great hence my decision to 'watch and wait' which I have never regretted.

I maintain a healthy diet and regular exercise regime which is outlined in the 'sticky' thread 'Top Tips For The Watch And Wait Brigade' within this forum in consequence of which, given luck, I do not anticipate ever having to undergo microsurgery or stereotactic radiosurgery.

You are of a much younger age than me and will of course wish to preserve your hearing ability. If you decide upon conservative management of your AN it is essential that you have regular MRI scans: monitor your symptoms and take account of expert advice and guidance but the ultimate decision relevant to treatment options rests with yourself.

Do be aware that even if you opt for microsurgical or stereotactic radiosurgical intervention just as in 'watch and wait' you will always require MRI scans as regrowth can occur even after excision or radiation.

Do undertake maximum research of all your options and you will eventually make the decision that is right for you.

Best Regards

Derek

[HeidiC]

Thank you for all of the replies.  This is all very confusing.  I know I have time to think things through and add things to my list of questions for the doctors.

I'm wondering that if I have the GK or CK, will I still have all the same symptoms that I have now since the tumor is still there, just hopefully dead?  I know sysmptoms can be worse with the surgery, since the surgery itself can damage things, but can't the symptoms get better too in some cases?  And is there more of a risk of stroke with the radiation? 

It is a lot to take in and I don't really have any local support(my husband is deployed, military town-hard to make friends when you move all the time), so that makes it tough.  But I am tough, and I will get through this!

[Mickey]

Hi Heidi! Ive been W+W for 4 yrs now. Everything has been "status quo" at the least if not a little bit better. I started out diognosed with a left side 1 cm tumor at 58 years old with tinnitus very slight high frequncy hearing loss and migranes. Migranes now are rare and much less severe. Other symptoms have been with me as long as I can remember and all are a "part of me" My intentions are monitoring and continuing W+W forever. I also belong to the W+W brigade started by Derek which posts some good information on new lifestyles on living with a AN. As for yourself, there are alot of factors you must examine. Take your time and go over them all staring with your age, size and location, symptoms. Next your treatment options along with what your own personal feelings. Most important best doctors for consutation and treatment of your choice. With all the good technology on AN`s nowadays, just figuring out what to do and moving on putting this mostly in the rear view mirror is the hard part. As you see there are so many nice people here to confur with who have done so. Wishing you the best, Mickey

[leapyrtwins]

Mickey is one of the longest watch & wait people I know - and from what I've read, it's working very well for him.

ANs typically grow slow - and even slower as you age - so it may be a while before someone has to seek treatment.

That said, though, if an AN gets large enough it can kill you (one extreme) or cause permanent facial and/or hearing nerve damage (a lesser extreme). 

Bottomline, if you decide to watch & wait, make sure your doc monitors growth through periodic MRIs.

To answer one of your surgery questions - because that's where I have personal experience - things can get better post op.  Often balance is initially worse, but gets better over time as the body adjusts to only having one hearing nerve.  Facial paralysis can, and often does, get better over time. 

Jan

[Jim Scott]

I'm wondering that if I have the GK or CK, will I still have all the same symptoms that I have now since the tumor is still there, just hopefully dead?  I know symptoms can be worse with the surgery, since the surgery itself can damage things, but can't the symptoms get better too in some cases?  And is there more of a risk of stroke with the radiation?

I'm not a doctor and this is just speculation based on my research but in almost every case, radiation will relieve your symptoms because, (following some unavoidable swelling) by halting it's growth the affected nerves are relived of the pressure from the expanding tumor. 

As for surgery improving symptoms, in my case, following debulking surgery (that reduced the size of the tumor) all of my symptoms disappeared.  They included intermittent 'stabbing' pains at the site of the AN, loss of sense of taste, lethargy and severe disequilibrium.   90 days later, the remaining tumor was radiated via 26 FSR treatments in a pre-planned procedure.  Fortunately, neither the surgery or radiation produced any real problems and I'm darn close to where I was before the AN symptoms began, back in 2005.

It is a lot to take in and I don't really have any local support(my husband is deployed, military town-hard to make friends when you move all the time), so that makes it tough.  But I am tough, and I will get through this!

Yes, you will.  We all do.  Your strength of character is a big asset and I hope you'll feel free to lean on your friends on the ANA discussion forums for advice and support.  We want to help.  Please allow us to do so.  Thanks. 

Jim

[LisaP]

Hi Heidi

I have been W&W for 3.5 years now first dx back in 3/31/2008.  I continue to choose toW&W with yearly MRI's due to mine is considered small.  You do have time to wait and research just like I have been doing.  I am glad that I did not rush into anything.  I do have daily symptoms and there are days where I wish this AN would go away but anyways I found that the more I talked with other AN's and did research the better I feel about dealing with my AN.  My daily symptoms are dizziness, headaches, balance issues and on occasion ear fullness, ear pain, numbness on rightside of face.

Hang in there

LisaP

[novagirl]

Heidi - welcome! I see others already gave you a lot of information. I just wanted to add that if you have questions about CK/GK procedures/side-effects, etc, I would highly recommend for you to go to the www.cyberknife.com forum. Two very experienced doctors answer questions for free on there and they respond almost instantneously.  The forum has a wealth of information. Just reading through old posts would answer a lot of questions.

I was also 33 at the time of diagnosis (my AN was 10mm at the time). I've been w&w for two years now.  It's been the right decision for me so far. No hearing loss, no growth, no additional symptoms, balance got better. However, w&w does not mean ignoring the AN. It is a form of conservative management, with regular MRI scans, hearing tests and doctor visits. For me, I decided that I am going to get CK the moment my AN shows conclusive growth on the MRI, or I get increased/new symptoms. So far, it has not happened.  Preservation of quality of life is my ultimate goal. I have a young daughter, and I wasn't ready for a major surgery, even though that was the only recommendation of the doctor that diagnosed me (I no longer go to that doctor). My minor symptoms have not interfered with any of my usual activities.

Please feel free to PM if you have questions. My husband is also in the military, but thankfully not deployed at this time. Hang in there! AN is no walk in the park, but we can definitely handle it.

Much love to you.

[skipg]

Heidi,
Thanks for asking this question. I am recently diagnosed and have talked to and read about many who are on the watch and wait plan. One CA gal has been 12 years ww. It gives me encouragement and hope that I am choosing the right option at this time. I am still actively pursuing a backup plan just in case I need it. Sometimes I feel like it is a lack of faith for not trusting that this thing will stay the same or shrink, but I believe in using knowledge and wisdom in all situations. We also live in a large military area (Norfolk) and the support groups for families are very supportive and tightly knit together. Contact your husbands command, I know they will point you in the right direction.
Skip

[HeidiC]

Thank you for your reply Skip, but the military is not as helpful as you would think.  My husband has been deployed for a while and the FRG that is supposed to keep in contact with the families during the deployment hasn't called or emailed me since they arrived at their location.  At the least, they are supposed to have monthly meetings.  We have been military for almost 9 years now and this is the norm.  I am looking into the ANA support group, though with 2 small kids, I do not think I will be able to participate.  Thanks again though!

[skipg]

I am truly sorry you are not receiving the support you deserve. I pray everyday for our military men and women who place themselves in harms way so my family and I can live free. I know you will find much support here and with a support group. I am going to be bold and say that if and when we (my wife and I) can host a support group all will be welcome. Kids included.
Skip

[Phillip64]

I am having that same question.  I just found out this week.  AN in right ear (3mm).  Both my mother and sister have had AN.  Not having bad symptoms now so I was thinking just wait and have another MRI in 6 months.  I am still in shock because ENT said I had about a 1% chance of having AN and he was ordering MRI because of family history.