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

30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)

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chelsea:
Hi everyone, new(ish) member of the club here. Long post ahead, thanks in advance for reading.

Jan 2017 started getting some weird symptoms like some facial tingling and strange vibrating in my ear, as well as tooth pains. I had recently had a root canal (I am convinced that the root canal made me aware of some of these symptoms) and thought that it was just after-effects from the dental work. Eventually, went to an ENT who noticed my hearing range in the high register was much lower on left side. I hadn’t noticed any hearing loss, just lots of strange ear sensations. Sent for MRI, results in SEPT 2017 on 2.5cm AN on left side. Was in total shock, not expected this at all. I have always been anxious about my health and whenever I would have strange symptoms in the past would think “oh I hope it isn’t a brain tumor!” And now this has happened to me… :S

Right now my symptoms are all super mild (except for sometimes severe anxiety) and are mostly some facial tingling, mild tinnitus, sometimes weird tooth ‘zaps”. Also I have commonly gotten some headaches and weird feelings in my head but I have had this for so long that I am not sure whether or not it is related to the AN (I know I could’ve had the AN for many years…so it is possible it was giving me these symptoms for years and I didn’t even realize!)

I am in Toronto ON (Canada) and have had preliminary appts with 2 doctors (Dr. Lin @ Sunnybrook and Dr. Cuisimano @ St. Mikes). Right now I am W&W until Feb when I have a second MRI (which will have been 6 months since first one) to see if any change.

I have been told with my medium size tumor that it is likely not “if” I’ll need treatment, but “when”. It would be amazing if the tumor didn’t grow, but I am trying to keep neutral in my expectations. My symptoms are extremely mild, the worst symptom is that I’ve been dealing with a ton of anxiety since the diagnosis, which I am trying to manage by talking to people, exercise, and meditation/yoga.

I have since become concerned that I have an AN on the other (right) side, because for the past few months I have been having some similarly weird sensations (full ear, some vibrating) on my Right side??? All the docs say that it could be just from Eustachian tube issues or something similar, or that I am being hyper-sensitive and not to worry, since there is nothing on the MRI from August. BUT the last Doc says that there is a very SMALL chance that something that looks like blood vessels in the MRI is actually a small tumor on the other side and I should do a contrast dye MRI just to rule it out, since I have been concerned about it. I have now convinced myself that I have a second one, and am just trying to get them to do the contrast for the next MRI but it might be too short notice.

For thinking about treatment: I have read the studies saying that GK is best for quality of life afterwards, especially because I really want to avoid permanent facial nerve paralysis. I know the risks of the radiation causing malignant tumors later on is very small, but as a young person (30 yrs) with a history of cancer in my family, this really freaks me out. My major fears for treatment are: malignant tumor, permanent facial paralysis, and terrible vertigo/headaches/cognitive issues.

I am not sure how to make the decision, if/when I need treatment… I know the risks of both, and it seems obvious that surgery has way more risks, but somehow I haven’t wrapped my head around the idea of radiation. Does anyone have a similar story and any advice on how they made their decision?

Apologies for rambling post, thank you in advance for any advice on how you made the decision re: treatment, and any other advice.

Thank you for reading and any comments!

Kathleen_Mc:
Hi Chelsea
Greeting from another Torontonian!
I started this journey @ 23 and I hadn't any choices to make, it was " hurry up and get on the table and pray you survive the surgery". Now I don't say that to scare you but to reassure you that if the doctor is willing to watch and wait for a period of time things are not dire. (I also did watch and wait with the re-growth I had of the original tumor so I know how anxiety provoking this all is).
The one thing I always wished was that I could have had gamma knife, it was not an available treatment in Toronto at the time, it wasn't really even discussed as the tumor was too large when finally found ( not diagnosed for years ). I lost the 7th - 10th nerves on the left side.....hearing lost, balance lost, facial issues, eye issue's, swallowing issue's and now 25+ years later I have cardiac issue's and I'm only 50.....possibly related to loss of the vagal nerve ( but not confirmed).
If I were you I would get into get another  opinion at the gamma knife center (  at Toronto Western I believe).
If your tumor is dealt with when it is small enough gamma knife is a better way to go from all that I read. Yes there's the risk of it causing cancer later in life......we all have the risk of developing some form of cancer as we age is the way I look at it.
It certainly needs to be determined what they are seeing on the other side, you should be having the MRI with contrast. You likely have to have the doctor order it that way.
And welcome to the club nobody wants to be in.
Kathleen

chelsea:
Hi Kathleen,

Thank you so much for taking the time to read my post and reply.
I have my 2nd MRI in Feb and then will have appointments with Dr. Lin and Dr. Cuisimano again, to see what they say and ask more questions. I will ultimately have to choose to stick with one Doc, but right now I am not sure who I prefer and want to see them both one more time.
Yes, I am strongly considering Gamma Knife but am still struggling with the decision. For now I will wait until they tell me treatment is necessary, although I am in that middle stage where if it gets too much bigger than GK won't be an option.

It is really comforting to hear from another Torontonian.

I am curious to hear how other people made their decisions, and to know if there are other Torontonians here!

I am sorry to hear you have cardiac issues... :( Hopefully you are still able to lead a somewhat full life?

Thanks again and take care,

chelsea:
Anyone else? Feeling pretty anxious and would love to hear some more comments/suggestion/voices...

Thanks in advance :)

Jill Marie:
Hi Chelsea,  I'm sorry I'm not really any help with your questions but just wanted to say Hi.  I had my surgery 25 years ago and no one told me there were any choices, if there were no one said so.  With that in mind I'm sorry you have a tumor and that you have to make a choice but then again as hard as it is to do so thankfully you do have a choice.  I hope as you do that you don't have a tumor on the other side as well.  There have been times when I worried that I might but it turned out to just be an ear infection or allergies, thank goodness.  I know it's hard but try not to worry about something that you don't know is a problem, hopefully your February appointment will put your mind at ease on that issue.

 I was 35 when I had my surgery for a Facial Nerve Tumor so I understand your concern about being fairly young.  On the bright side, I've been married for 44 years and at the same job for 23 years despite my medical issues.  You too will get through this and we are here to help when we can.  The board isn't as active as it use to be, I've been told a lot of the old timers like me are on a Facebook site, I don't do Facebook so I'm not sure.  Those that are on here are very helpful as well.  I stick around because I've been helped by this site a lot over the years and want to repay that help.  Take Care, Jill :)

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