Watch and Wait > For those in the 'watch and wait' status

Watch and Wait....Why?

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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

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