Husband Newly Diagnosed with very large tumor

[sbrn]

I went to our PCP this morning for a cold and decided to ask if the results of my husband's MRI were in.  Wasn't expecting the bombshell that came next.  I was told that my husband has an extremely large right sided acoustic neuroma measuring 11cm x 12cm.  As I nurse I found that extremely hard to believe, and had the doc repeat it several times.  Just doesn't seem possible that he could have a growth that large at the age of 38.  He's had almost complete hearing loss and ringing for over 10 years now. He's active duty military and had it evaluated by military physicians approximately 10 years ago.  He was told that his hearing loss was due to loud music and hunting; no further evaluation was done.  He's developed persistant intense headaches over the last 2-3 years and decided to make another appt. to have it looked at primarily in preparation for retirement.

The MRI was done on 6/29, and the ENT never called with results.  I'm not overly confident that the PCP really knew what he was looking at.  Just curious if anyone had heard of a tumor even close to this size.  Any pointers would be great.  We have an appt. with the ENT this Friday.

[Larry]

I've never heard of an AN that size. My first one was 2.2cm and was close to the brain stem so 11 or 12 cm - I think maybe its mm. In any case, get a second opinion

Sounds rather strange to me


Laz

[moe]

We have a gentleman who had an 8cm AN, I think he was the record on our forum.  So definitely possible but really unbelievable. Goes by satman

Since they said "very large" it may very well be around that size.

Very strange circumstances that he wasn't notified immediately by your ENT.
I am also a nurse, husband is active duty. I had my MRI done by a civilian ENT, and for some reason or another, he never was notified of the results of my med-large AN compressing my brainstem.
So I found out about my bugger, when I called for my own FU appt, assuming everything was OK. As you can imagine what a shock

We live near Seattle, I had my surgery at Madigan Army Medical Center. The doctor there trained at HEI, and is VERY competent. People come from all over the west coast.
 Unfortunately, my tumor had been in there for too many years and had squashed the facial/hearing nerves, and there was no choice but to cut and reattach the facial nerve. Other than that, I'm doing well. (my new "well"). No headaches, balance is actually pretty good, because I had already compensated.

Anyway, definitely get this taken care of while on active duty. Feel free to PM me, one military wife/nurse to another Where it says "Send a personal message" it will go to me only-hence PM me.
Maureen

[grega]

Hi .... I surely hope the results are not correct.

What I'm surprised at is that the doc gave you the results without your hubby being present.  With all the HIPPA crapola these days, it dosen't seem that that doc should have told you alone, specially before discussing with hubby.

It seems unreasonable for the ENT not to notify hubby, with urgency, of an AN of such a large size.  I agree..... 2nd opinion ..... possibly another PCP or ENT, too.

Greg

[kenneth_k]

Hi,

if the dimensions are correct, then it is very big for sure
I sure hope he can get it fixed soon and I guess surgery is the only option for something that big

Good luck on Friday and please tell us how things turned out.

Kenneth

P.S. I'm also active duty, Royal Danish Air Force. Actually, it was my military doctor who discovered my tumour.

[Jim Scott]

sbrn ~  Hello, and welcome.

I'm sorry to learn of your husband's AN but I'm glad you've discovered the ANA website and chosen to make use of our discussion forums.  I hope we can be of some help.

Although I'm not a doctor and don't usually wish to oppose a physicians opinion, I have to add my skepticism to the others on this thread regarding the measurement of your husband's tumor.  I suspect that the 11x12 measurement is in millimeters, not centimeters.  However, I haven't seen the MRI and of course, I could be wrong.  At 4.5 cm, my AN was considered large, was pressing hard on my brainstem and was judged by my neurosurgeon to be potentially life-threatening with no option but immediate debulking surgery.  

The fact that the ENT never even called your husband with the results of the MRI that discovered the AN is also problematic.  My PCP called me in the early evening, from his cell phone, when he received the results of my MRI showing the large tumor, which my neurosurgeon later commented was 'probably' growing for 'at least a decade'.  This is not unusual.

My only suggestion would be to clarify the actual size of the AN with your doctor and find out if radiation is an option.  It may not be if the AN is beyond 3 cm, as it was in my case.   Frankly, the ENT physician doesn't seem to be the type of doctor that inspires confidence in a patient.  His neglect in informing your husband of his tumor and you having to find out via the PCP is disappointing, at best.  

I trust the upcoming consult with the ENT will prove productive and that your husband can have his AN successfully addressed in a timely manner.  Our membership stands ready to inform, advise and most of all, support you and your husband as you approach this medical problem.   Please stay in touch with us via these forums.  Thanks.

Jim  

[Kaybo]

Hi & Welcome!
I will be following this closely as I am also curious about the size.  Regardless of the size, know that this is an incredible, supportive group of people and we are here to answer any questions you might have!  If, in fact, it is that large...I would change Dr's for the lack of concern on their part...just my 2 cents!!

K   

[CHD63]

Just weighing in with my welcome to this forum.

I, as well, am mystified how anyone could have 11 or 12 cm acoustic neuroma without having very debilitating symptoms.  Surely this is mm, not cm ..... at least, I certainly hope it is misinformation on the actual size.

I, also, would change doctors very quickly ..... for several reasons, not the least of which is breaching my privacy.

Best thoughts and let us know what the outcome of all this is.

Clarice

[leapyrtwins]

This IS shockingly large for an undiagnosed (until recently) acoustic neuroma. 

Like Laz, I'm thinking that the measurements you gave us should be in millimeters (which would make more sense), but I could be wrong.

I would definitely verify this; get a copy of the radiologist's report.

Moe is right - as far as I know - the record on the Forum is held by Satman who had an 8 cm AN.  And he's a very unusual case.

I know lots of docs who give results of tests, etc., to a spouse - so I wouldn't be concerned with HIPPA laws; but that's just my take on the situation.

Also, I wouldn't waste time with an ENT.  From my experience, they don't know much about ANs - and usuallly don't treat them.  I'd schedule an appt. with a neurotologist and/or neurosurgeon.

Jan

[sbrn]

Thanks for all the replies and support!  As suspected the doc was wrong.  My husband & I had gone to the PCP together and agreed for info. to be discussed with either one of us, so I believe that's why he shared the info. with me without my hubby present.  Plus being a nurse always gets you a little further.  I voiced my doubt over the size, but he repeated it several times.  I told him I found that hard to believe with no other symptoms besides hearing loss, ringing, and headaches.  So, I called the nurse back today and told her that either Greg needed to go down in the record books or the doc screwed up reading the report.  She pulled it, and sure enough it was mm.  So it's really 12x11x12mm or 1.2cm.  I'm majorly relieved since that opens up a lot more options!  Needless to say the ENT is going to get an earful (no pun intended) for not calling!  Working in the healthcare industry, I've already put out feelers and identified the best neurosurgeon in the area.  Works out of Vanderbilt and St. Thomas.  Thank God he takes TriCare!

I haven't told my husband yet.  He's on TDY until tomorrow.  Didn't think it was wise to tell him he had a brain tumor when he's alone on a business trip.  I'm sure he will be less than thrilled that I didn't call him immediately, but I wanted to make sure that I was armed with info. and could tell him in person.  Tomorrow is going to be a rough day....

[leapyrtwins]

So it's really 12x11x12mm or 1.2cm. 

Well, that's a huge relief.  An acoustic neuroma of 1.2 cm is considered medium which should give your husband the choice of surgery or radition - although some of that will depend on the location.  He should also be able to watch and wait for at least a little while, so don't rush into anything.

I highly recommend contacting the ANA for their informational brochures.  They are well-written and very helpful.

Good luck; please keep us posted.

Jan

[jaylogs]

I just now read through this thread for the first time and I would have added my skepticism because when I was diagnosed, the radiologist's report stated my An was 8cmx8cmx8cm (rough dimensions here) but as it turned out, like your husband, they had gotten the metrics all wrong (it was supposed to be mm's, not cm's!)    Hmmm...isn't that what happened to a Mars probe that was sent out a few years ago, but never made it to the surface in one piece? Math, ya gotta love it! Anyways, that's GREAT news it's not that huge...now you can concentrate on options as opposed to not! Good luck and keep us informed!
Jay

[ppearl214]

An acoustic neuroma of 1.2 cm is considered medium.....

Hi Jan and all.... actually, AN's deemed smaller than 1.5mm is deemed "small" but, as we all know, circumstances such as location of tumor, if its pressing against the brainstem, etc all are taken into consideration as well as it's size.  As we also know, there is a +/-2mm "total margin of error" in the dimensions noted on head MRI's... keeping in mind that different professionals may read each one differently (ie: the radiologist vs the radio-onc vs the neurosurgeon, etc) as well as the image "slices" may be different on each machine, done by each technician.

So many factors to keep in mind.

Sorry, I had coffee this am.
Phyl

[moe]

Whew,
What a relief! It will be a rough day, but as you know, stress that he has a growth on his hearing/balance nerve which is treatable, rather than "brain tumor". Sounds so much better!
Maureen

[CHD63]

Very relieved to have it confirmed that it is mm, not cm.  Still would change doctors  ..... for a doctor to repeatedly say it was an 11 cm AN ......  

As the others have said, a 1.2 cm AN is small enough to give you several options.  Since ANs are typically very slow growing, slow down, take a deep breath, and do tons of research.

As for the privacy issue, I understand now how the doctor really had permission to discuss it with you and that is OK.  Let us know how your husband takes it and urge him to join us on the forum.

And be sure to send for the ANA materials.  They are very comprehensive and reassuring.  They also just released some newly updated information booklets, if you want to purchase any of them.

Best thoughts.

Clarice