ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: HeidiC on June 25, 2011, 03:18:07 pm
-
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
-
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
-
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
-
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
-
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
-
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!
-
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
-
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
-
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
-
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
-
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.
-
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
-
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! :)
-
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
-
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.
-
I'm sorry to hear that Phillip. Mine is small as well, but since I am having symptoms I am leaning more towards surgery. My consultation with the Neurotologist isn't till August 2nd, so for now I am waiting!
-
Hi,
I have daily symptoms, still W&W, 3.5 years now into this journey, not sure if all AN's seek treatment once dx. My next MRI is in Oct. If no growth, try to get thru another year, if growth then will have to make a decision, leaning more toward radiation.
LisaP :P
-
Heidi,
I have been a w&w also for about three years,, but this past year my symptoms have worsened so I consulted with another Dr and am transitioning to surgery with in the next 4-6 weeks..waiting on appt. It is a VERY difficult time because you wonder if you are doing right by waiting and don't want to wait "too" long and have more complications.. for me,, mine is a large tumor 2.8cm mostly in the CPA area with little extension into the IAC (ear canal) and pressing on the brain stem.. so it is time for me to transition.. my symptoms include pretty severe headaches, dizziness, fullness in the ear and some ear pain, wonky headed,, and fatigue.. many days I take a short nap in the afternoon just to make it through..
My best advice after being w&w,, is you will know when it is time for you to move forward... I would definitely send your MRI out to House clinic in LA for free second opinion and phone consult,, no obligations,, and get several Dr opinions.. I found this very helpful in deciding in my case.. I found you can get differing opinions about size ,, treatment options,, and just about everything involved from each different Dr.. they most all have an "agenda" that they think you should follow.. it is ENTIRELY up to you what you do.. be at peace with your decision.. I think at first I did not have many symptoms and really just wanted to "deny" I had the thing so I just watched awhile,, but as I said , my symptoms have just gotten worse and tumor has grown on MRI scan and so it is time to move forward and I am at peace with that,, radiation was out of the question for me the Dr said as the tumor was too large and pressing on brain stem already. as he explained "usually" the tumor will enlarge after radiation before it shrinks and I could not risk any more pressing on the brain stem...
these are just my thoughts and feelings as one who has been w&w and now is surgery bound... it is VERY scary but as I told the Dr.. " It is not going to go away on it's own,, so I must do something to have better quality of life again"... GOOD LUCK in your decisions and just go with your gut and know you are doing what is best for YOU and not anyone else and you will find peace.... much best wishes in your journey... Jane
-
I'm reading all the posts on this subject and have come up with another question. If someone is in the watch and wait status for two years and then the MRI shows growth at the 2 year check-up, do most people then decide on treatment or do you continue to watch and wait? I'm being told I need to make a decision now. My symptoms include a little hearing loss, constant tinnitus (at times gets louder) and dizziness.
Lisa
-
I was watch and wait for 3 years. I had a lot of symptoms, the worse was the pain and pressure on the AN side. This year it showed the tumor had been remodeling the bone to accommodate it's growth, thus the pain and pressure so had no choice but to do surgery. The surgery was difficult, I lost the hearing on my right side, it has been 3 months and I am still recovering. I wish I had it done a couple of years ago before the pain got too bad and before it grew more and before it remodeled the bone but sometimes you do what is in the moment and my moment was to wait. I don't know what I was waiting for. So some people can W&W and some can't. It was always in my thoughts daily and now my thoughts are waiting for full recovery. It is a tough surgery, look at all your options. And make sure you are in the best physical condition before surgery, I was not and am still paying for that. Good luck with your decision, it is hard no matter what you choose. Welcome to our forum.
-
Lisa,
questions.. have you had your MRIs done at same place each time? Have you had more than one Dr. opinion? Have you sent info out to House clinic just for the sake of a "free" second opinion from reputable, experienced Drs.?
I found just having that info available to compare to local Dr.s was very helpful ,, even though I would consider going out there,, personal issues dictate I am not really able to at this time,, but their consult was very rewarding and I was able to compare if my Dr suggested the same things.. if you get my drift here,,,,, PLUS if someone is telling you YOU MUST make a decision right NOW,, I would step back from them and get another opinion...
In my experience and most Drs will tell you,, these are slow growing and most all of us have time to think.... some less than others due to size and location,, but yours ,, to me and I am not a Dr by any means,,,,yours seems small and symptoms do not seem intolerable from what you describe... you must be comfortable with your decision whatever it is,, to w&w or move forward and you will know when it is right... I did anyway,, I just could not tolerate the headaches and other symptoms any longer... but try to find other opinions if you can,, the more you input/info you can get from others, Drs included,, the better you will feel about your decision I believe,,
Hope I have not rambled on too much,, but I hate to hear someone rushed into this decision unless there is medical reasons or bad symptoms to warrant it......good luck..
-
I don't think my doctors are rushing me into a decision. I believe that maybe they feel that since it is showing growth, but is still small in size, it would be easier to seek the treatment now. I have had three MRI's from UPMC and then one in Erie (my initial one).
Of course, as most people would, I hope that my outcome is that I will return to normal regardless of what treatment I decide. The scary part about me sending my information to House, is that with all the posts that I've read from people who have had their surgeries there, they lost all hearing, have facial paralysis or other issues that have continued.
I've read the John Hopkins website on ANs and it appears to be a top hospital in treating them. You can go with them for 2nd opinions, but I don't think it's in person.
I definitely will be getting a second opinion, I just haven't decided where yet.
Lisa
-
I don't think my doctors are rushing me into a decision. I believe that maybe they feel that since it is showing growth, but is still small in size, it would be easier to seek the treatment now. I have had three MRI's from UPMC and then one in Erie (my initial one).
Lisa
Personally, I think its better to get it out sooner rather than later. I know they are slow growing and some don't grow, but most of them seem to eventually have to be treated. I figured why wait and let it grow. I didn't want to wait till I have significant hearing loss, and when it is bigger and more intertwined with the nerves and harder to get out and will likely cause more damage in getting it out. I read a post the other day where the lady said to the effect of that she had 85% hearing recognition a year ago and now its 30% but she has time to make a decision...I wouldn't wait much longer! The above is all, of course, just my opinion. Everyone has to weigh all the information and come to their own decision.
A second opinion is a great idea. Good luck in finding a great Dr!
~Heidi
-
Hi Lisa .....
Just wanted to respond to your comment about patients going to House. I am not a doctor but admittedly am an information junkie and have read and studied about acoustic neuromas and treatments since I was diagnosed nearly four years ago.
Of course, as most people would, I hope that my outcome is that I will return to normal regardless of what treatment I decide. The scary part about me sending my information to House, is that with all the posts that I've read from people who have had their surgeries there, they lost all hearing, have facial paralysis or other issues that have continued.
I think it is everyone's wish to return to "normal" following treatment of an AN. The truth of the matter is an acoustic neuroma grows on the acoustic nerve sheath (or more accurately, the vestibular portion of the acoustic nerve ...... hence, the term vestibular schwannoma) and therefore affects the hearing of a large proportion of those diagnosed. Even with radiotherapy, hearing is rarely restored to pre-AN levels ..... the hope is to maintain the level at the time of treatment. If the AN continues to grow, it will, in the vast majority of cases, adversely affect the hearing.
House Ear Clinic sees hundreds of AN patients each year ...... very often the most difficult or most advanced ones. Therefore, the stats are skewed. If I am not mistaken, they were the pioneers in the mid fossa approach, which was developed strictly for that reason ...... hearing preservation. I do not know where you have read your information on patients being treated at House. My information has been almost exactly the opposite, with extremely high rates for hearing preservation and saving the facial nerve.
Yes, I did lose all of my hearing in my AN ear following my surgery at House, but my first neurosurgeon (at Duke University), as well as the surgeons at House told me, in advance, that even if I chose to do radiotherapy or nothing, I would eventually lose all hearing in that ear. Therefore, I had the Oticon Medical Ponto Pro abutment implanted at the same time as surgery and I am doing well with "hearing" from my AN side.
Regarding:
I've read the John Hopkins website on ANs and it appears to be a top hospital in treating them. You can go with them for 2nd opinions, but I don't think it's in person.
I will say this ..... one of the higher ups in the Johns Hopkins Administration went to House for his AN surgery, because in his words "they are best in the world" ..... had mid fossa approach, did extremely well, and preserved his hearing and no facial involvement.
There are other excellent medical facilities around the country and House is certainly among them.
Clarice
-
Hi Clarice,
I've probably missed all the good outcomes from AN patients that were treated at House. I don't think I've seen one where they had the Mid Fossa. That's the type that my ENT and Neurosurgeon are recommending for me. But when reading about it, there's a higher chance for facial paralysis. I'm driving myself crazy with all this and trying to decide what to do. I feel like I'm in a no win situation.
I would give House a try, but I've only flown a few times and don't really care for it. So then I would be worried about two things, flying and surgery.
Tinnitus decided to get louder. It's becoming much harder trying to ignore it. It makes me question if the tumor is growing even more because the tinnitus is louder. Anyone know the answer?
Lisa
-
Lisa, as long as the dr you are seeing for possible mid fossa does many mid fossas then you should be ok for a local dr. Some of the facial paralysis can depend how bad the tumor has already damaged the facial nerve. My Univ of Iowa does many mid fossa and I know several who have had none. Me included on one side. This is because I have had surgery on both sides due to NF2. Many times the facial paralysis is temporary and goes away in time. How long a time can vary from short to longer. On my other side was 3 1/2 mo. before was gone. Eventually another tumor wass a facial neuroma and a nerve graft was done at the same time and I have some movement and is ok at rest. Many drs will leave some of the tumor on the facial nerve to keep the facial nerve ok. It is hard to make the choice that you feel is right for you and I wish you well. Cheryl R
-
Hi Lisa,
The volume of my tinnius fluctuates. I have had bouts when it gets very loud for weeks but it then returns to a lower volume. I have found the volume is lower now that I no longer drink coffee. The doctors I talked to were not concerned with this since the fluctuation is normal for me for ~ 1 year and I have not had an increase in any other symptoms. Best wishes to you in finding a treatment plan with doctors you are comfortable with. Most insurance plans will let you get 2nd and 3rd opinions if you feel you need more info. This forum is great for info.
-
Hi;
I just look at potential, logical outcomes when it comes to w&w. It is known a tumor does not need to grow to cause damage, so, one is basically taking a chance by treating, or not treating.
Re; NF-2, of course the potential logical outcome is bilateral deafness w/o intervention, or, with intervention. Each case and each person is so individual and there are no absolutes or guarantees.
Guess I'm not a fan of conservative management if good hearing still exists.
-
Hi;
I just look at potential, logical outcomes when it comes to w&w. It is known a tumor does not need to grow to cause damage, so, one is basically taking a chance by treating, or not treating.
Re; NF-2, of course the potential logical outcome is bilateral deafness w/o intervention, or, with intervention. Each case and each person is so individual and there are no absolutes or guarantees.
Guess I'm not a fan of conservative management if good hearing still exists.
Thats pretty much how I came to my decision...That I have little hearing loss so far, vertigo, intermitant facial numbness, and headaches and that I'd like to get it out before it becomes more of a problem. None of the symptoms have affected my life much as of yet, and I understand that there is risk with the surgery, but I feel that the symptoms and risk will only get greater as the tumor grows.
I am at peace with my decision, though that peace didn't come with the making of that decision like many people say, it did come over a couple weeks time following it.
~Heidi
-
Hello!
I am in year 11 of Watch and Wait with a small AN. There has been no measurable growth (bear in mind that small ANs are hard to measure accurately.) My reading has lead me to conclude that while it is true that surgical complications are more likely in an older person, it is also true that the surgical technologies improve rapidly. I am now doing MRI every 3-4 years, but initially it was every 6 months, then annually. I am happy with the decision I made. No plans for MRI until June, 2013. Then we'll take it from there. The main benefit I got by not rushing into surgery is that I got an ideal of how it would behave over time. It is working out nicely for me, as I hope it will for you.
With warm regards, and best of luck on our decision,
Chris
-
I, too, am watching and waiting and wondering if this is the right choice. I will be 60 soon, and suspect surgery would be less traumatic on a younger person. But I cannot wrap my head around the idea of surgery. I have submitted my MRI to House Clinic for evaluation. As far as I know, there are no doctors in Nevada who deal with this condition. I was diagnosed 06/22/11 with a 13-14 mm mass. Symptoms are hearing loss (moderate) and some tinnitus. I am also very tired and don't know if that is a symptom of the tumor or of being worried. It seems to be a choice between the devil you and the devil you don't know.
-
Hi Kristen and welcome to the "club" no one really wants to be a part of....but there are great people on this forum.
One thing you will notice is that every situation is different and everyone's response to it varies for differing reasons.. I was diagnosed in 2008 with AN and got very little info from Dr I was referred to.. very frustrating but I did not know how much I did not know... and what questions to ask.. Like you, here in Ala there are not too many Drs with considerable experience with these tumors,, or not that I was aware of anyway.. but travel is pretty much out of the question for personal reasons..
Everyone will tell you to start researching it..that too can be daunting.. the whole experience will be overwhelming at least at first it was for me.. it is still very scary. I am "your age" so I know what you are feeling concerning the timing..
At first I believe I was in denial and did not WANT to do anything, then you move on to acceptance.. I have transitioned to surgery after these three years and about 5 MRIs (YUK) because symptoms have worsened for me.. I started with just tinnitus and mild hearing loss but have started getting pretty bad headaches and dizziness/ nausea and extreme fatigue at times.. also have numbness on tongue and some facial "tingling".. hard to describe
I did send my MRI out to House Clinic,, very valuable info and wonderful , knowledgable Dr.. It was more his consult, twice over the phone, that prompted me to move forward. My tumor is mostly in the CPA with small extension into the auditory canal and is pressing on my brain stem; hence the time to move forward with surgery. Radiation is not an option for me.. but is for some. Yours seems rather small ,, to me and I am not a Dr.... so you have time to decide and research Drs. and hospitals.. Take your time as these are usually slow growing and benign.. and with various consults,, you will come to a decision that is right for you.. some w&w for years with no further treatment needed and others need treatment right away due to location of tumor and symptoms.. you will feel better as you get more input from Drs. I think you will be happy with consult from House Clinic ,, they seem to have a wonderful reputation.. Good luck,, sorry to ramble,, but this is a very difficult time for those of us pre-treatment.. ..our prayers and thoughts will be with you as you go forward on your journey...