Watch and Wait....Why?

[followingHim]

My husband and I don't understand the purpose of "watch and wait".  My husband has been told that his AN has come back and is almost as big as it was before, so why not do something about it?  To us the so called "watch and wait" is just a delaying tactic.

Views and opinions welcome.

followinghim

[jerseygirl]

Hi,

I am so sorry your husband's AN has come back. I also had a recurrence and "wait-and-watched" for 9 years with it. My first impulse was to do something about it right away, and I investigated all available options then. I did not like what was being offered. All of the available options meant a threat to my facial nerve and possibly more suffering for me and my family. The size of my AN was still very small and I had no symptoms. Perhaps, this was crucial to my decision. It was very emotionally burdensome  but I waited for 9 years and last year, after investigating all available options again, I had another surgery. I did not lose my facial nerve but the overall recovery is not short by any means.

There are two things I learned from the experience: 1) technology moves forward immmensely every 5 years and thngs that are possible today were not possible 9 years ago and 2) I postponed mine and my family's suffering, especially important since I had small children at the time. Also,  every time you have a treatment, you have less options available and you find that the number of qualified surgeons (micro- and radio-) just dwindle even though new things come up. My neurologist expressed it best: "You should do something about your AN as late as possible becuase this will minimize treatments for it over your lifespan".

      Eve

[jerseygirl]

I just want to add about the AN size. I asked at the beginning of my wait and watch journey about the critical size of my tumor when facial nerve preservation is no longer possible. The answer was that there is no critical size. However, the outcomes rapidly become poorer once the tumor reaches 3 cm. That pattern is still true today as it was true many years ago even if the numbers are fortunately different. Yes, I wanted to wait as long as possible but I also wanted to give my surgeon the best available chance to save my facial nerve.

           Eve

[Sheryl]

Hi - some people have no choice at the moment other than "wait and watch".  I have been inundated with family and personal medical nightmares - had to decide what was most important.  My six-year wait is still ongoing with hardly any symptoms or growth.  In between I've battled (and won) breast cancer with chemo and radiation and have a husband who has another kind of benign brain tumor removed and has regrown (meningioma) - add two parents recently diagnosed with Alzheimer's.  As Jerseygirl says, technology is constantly changing.
Sheryl

[followingHim]

Thank you for your responses.  I have found them very interesting.  My husband's tumour was operated on 18 years ago, a week after diagnosis.  We were told after the surgery that the surgeon believed he had removed all the tumour and that it would not come back.  I pressed this point with the surgeon in question and he said there was "a one in a million chance of the tumour returning".  Well, it has come back and is approx 3.3 x 2.4 cm and is pressing against his brain stem.  The first surrgery left him with facial paralysis (from which he recovered a little) and he is completely deaf on his left side. He also had to have a tarrsorophy. His present neuro-surgeon says that this is a small tumour and is not life threatening.  My husband is 64 and here in the UK people over 70 are only monitored, not treated.  We are told by our neurosurgeon that he will only refer my husband on if the tumour is still growing.  I am not at all impressed with this proposal - it seems to me more like stalling and neglect.  My husband has declined further surgery because he really doesn't want to have complete facial paralysis on his left side with all the problems that entails again.  My husband would much prefer the radiotherapy options rather than go through surgery again.  

Kind regards

followinghim

[leapyrtwins]

From what I understand, watch and wait is a reasonable option for some.  It's usually for those with small ANs that aren't causing them any trouble.  Typically ANs grow very slowly, so sometimes it's possible for patients to watch and wait until a time when their AN grows or starts to cause problems. The key is monitoring the AN so when watch and wait isn't a reasonable option anymore, the patient can do something about it (radiation or surgery).

Being an impatient person myself, I'm glad it wasn't an option for me.  I wouldn't have been able to just watch and wait 

I give those who can a lot of credit.

[ppearl214]

hi followinghim and good to see you posting   Great responses thus far and my question is this... do you need a referral in order to go mainland Europe for further treatment instead of having to wait for proof of growth?  I briefly dealt with NHS and still don't understand all the processes.  Maybe Tony or Derek can help/suggest?

Tony/Derek?

Thanks and again, welcome!

Phyl

[followingHim]

Thank you to you all for your kind and helpful responses.   All I know is that it would appear that my husband needs a referral in the NHS system to move on for any other assessment and treatment.  We are thinking that the "watch and wait" is a system that keeps patients off the statistics and waiting lists.  We are far from impressed with the "treatment" my husband has had so far.  He has just had treatment for a heart condition and the whole thing from start to finish was fantastic - quite unlike our experiences, such as they have been with neuro.

We still don't understand the point of the "watch and wait" status...

Kind regards

followinghim

[Derek]

Hi there...

So sorry to learn that your husband has been most unfortunate in having a regrowth some 18 years after excision. I am presuming that he has not had the opportunity to be subject of the monitoring procedure post-treatment due to the MRI system being in it's infancy during that period.

I am also presuming that the present size of the AN is in fact 3.3cm and not 3.3mm. If so then in normal circumstances this exceeds the usual maximum 3cm associated with acceptable safe treatment via the Gamma Knife (GK) stereotactic treatment method. The Cyberknife (CK) radiosurgery method will not be available within the UK until late 2009 when it beomes operational at The London Clinic  situated in Harley Street within the capital. Depending upon diagnosis etc it may be possible to have CK treatment on an acoustic neuroma which marginally exceeds 3cm. Cybernife treatment is of course presently available at sites within the US and Europe.

I am not personally aware of any NHS directive that excludes AN patients who are over 70 years of age from either microsurgery or radiosurgery treatment. You will be aware from my signature content that I also reside within the UK. I am the same age as your husband and in my 7th year in the 'watch and wait' mode albeit, if I so wish, I can opt to have microsurgery or radiosurgery at any time either privately or via the NHS.

You are obviously not confident with the advice of your husband's present neurosurgeon who apparently has classified the size of your husband's AN as 'small' and that he will only consider treatment if the AN continues to grow.I would certainly hope that he is now being regularly monitored via MRI scanning.Perhaps you could consider requesting your GP to arrange for a second opinion from an alternative neurosurgeon or otolaryngologist with consideration of him being referred to a stereotactic radiosurgeon for assessment. If that is not possible then you would have to consider private medical insurance cover to arrange such a consultation and if that is not possible then it appears that the last available recourse would be to pay privately.

Having regard to the medical antecedents of your husband, I can fully understand why he would not wish to undergo repeat microsurgery if there is the possibilty of an alternative treatment method being available to him. I am not aware which area of the UK that you reside but if it is of any assistance to you in the dilemma, I can unreservedly recommend the professional services of my own specialst Consultant Neurosurgeon Mr J G Rowe at the National GK Centre, Royal Hallamshire Hospital in Sheffield.

The opportunity to 'watch and wait' is a recognised and approved method of monitoring the AN condition  whereby a patient who has minimal symptoms with a small / medium size tumour can delay any form of treatment acting upon the advice of the respective neuro consultant and being subject to regular monitoring via MRI scanning. This method of course requires a great deal of self belief, will power and complete confidence in the supervising neuro consultant. The usual reasons of the patient who has chosen the 'watch and wait' mode are that they do not undertake any risks that are associated with any form of treatment, such postponement allows for advances in future technical developments in the treatment of ANs and last but not least....there is always the possibility that the AN will not show any further growth rate whereby no future treatment would be necessary. Remember that irrespective whether the decision is to opt for treatment or to 'watch and wait' there will always be a requirement to undertake regular MRI scans for the rest of a patient's life in furtherance of monitoring for possible regrowth. I personally accept the annual MRI scan as akin to a visit to the dentist or optician. It works for me.
 
I do hope that your husband has a successful outcome to the current situation.

Best Regards

Derek

[followingHim]

Derek, Hi and thank you for your reply.  I hope you don't mind but I have pm'd you.

Kind regards

followinghim

[Derek]

Hi again...

I have responded to your PM with some info that you may find of use.

Best Regards

Derek

[followingHim]

Just a quick update:
we are trying to get Rob referred for a private consultation at another hospital.

regards

followingHim

[Derek]

Hi 'FollowingHim'...

Great to see that you are 'digging your heels in' and hopefully your endeavours will produce the results that Rob is entitled to and which he justifiably deserves.

Remember that we are all here to help in any way that we can.

Regards

Derek

[followingHim]

Rob has now had a private consultation and has been told that his tumour is now too big to be treated with radiotherapy and has been advised to have the surgery option.  The consultant is going to hold a case conference and then call Rob back for another meetig and answer any last minute questions we might have before he arranges for the surgery.

followinghim

[Derek]

Hi again 'fh'...

Thanks for letting us know of the result relevant to Rob. It has been a very stressful period for you both and I do hope that the present consultant has instilled the essential elements of trust and confidence with relevance to his professional diagnosis and advice.

My best wishes for an eventual successful outcome and do please keep us posted re Rob's progress.

Regards

Derek