tumor recurrence after 20 years; the decision is killing me!

[cmp]

Hi all,

I've been lurking and learning for a couple of weeks now, and am enormously grateful this forum exists!

Here's my story: I had surgery to remove a 5 cm AN removed in 1988 in Shands Hospital in FL (the neurosurgeon was Albert Rhoton). We were living in New Mexico at the time and had an 11 month old child (I was 29). The time from shocking diagnosis to surgery (2 days after my daughter's 1st birthday!)was 3 weeks, which meant the only real decision we had to make was where in the heck we could find a surgeon I trusted to get me through 10 hours of surgery in one piece so I could go back to caring for my daughter.

I had total right sided hearing loss for several months prior to diagnosis, which had been written off by the ENTs to congenital hearing loss (I already had a severe left-sided loss since childhood, with minor loss on the right side). The only other symptom I had--and the one that tipped my family doctor off--was very sporadic, strange vertigo (when I looked over my right shoulder, most of the time the room would do flip flops for a few moments). Tumor was totally removed (except for a cell or two, it appears!), and I had no health complications whatsoever, but my facial palsy persisted for 12 months so I returned to Shands for a 7-12 anastomosis, which has done a nice job of improving my facial symmetry at rest even if it hasn't freed me of a lopsided smile! I also had a tear duct cauterization in Ohio (where we moved shortly after the surgery) to help with dry eye; I had a tarsorrhaphy done in the hospital, just a few days after the AN surgery.

The funny thing was, even though Dr Rhoton was on the ANA medical advisory board at the time (chairman or some such head honcho designation), he never even mentioned its existence! I discovered it almost by accident a few months after the anastamosis in '89, and though I never went to any symposia or support groups (because I believed my "AN experience" to be safely behind me!), I did send in an article (probably in '90 or '91) about facial reanimation using biofeedback techniques, which I'd been learning with Jackie Diehls in Madison, WI (I was one of her earlier patients--she was working at the time with a doctor whose first name was Richard and whose surname I can't remember for the life of me...) I had a few followup MRI scans--one in Ohio, 2 years after surgery, and two in Massachusetts, where we now live, in '99 and 2000). Then I sort of fell off the radar screen, because I really didn't think I'd ever have to think about growths in my head again!

Flash forward 20 years to present: I was sent for an MRI in mid February (sporadic facial neuralgia--though not horribly painful, as TGN reportedly is--on the LEFT side!), which revealed that the mass they had been interpreting as scar tissue was growing--it's apparently 1.8 cm now. And, on my daughter's 21st birthday, I found myself in Dr. Michael McKenna's office in MEEI, being told I should deal with it within the next 6 months (Dr McKenna had done my two followup MRI in 2000) . He referred me to Dr. Barker, his usual neurosurgical partner these days, but as I had already made an appt with Dr Martuza at MGH, who Dr Rhoton recommended when we contacted him in February for his advice, he said that would be fine as well. I saw Dr Martuza this past Wed; he referred me to Dr Jay Loeffler to learn more about radiosurgery before deciding what I'd like to do, and he agreed that 6 months was a reasonable time frame to act within.

The reason I am posting here, finally, is that I have NEVER been so incapable of making a decision in my life. I go back and forth between micro- and radio-surgery (which I've read about here and elsewhere on the 'net, but won't be able to pose questions about to Dr Loeffler until May 28th! Argh!), adding in the various complicating factors in my life, and basically end up blowing a cognitive fuse every time.

The complicating factors are these:

1) My mother, who was diagnosed with metastatic breast cancer in June of last year, has moved from Florida to a town in MA about 5 minutes from me (I am her only child; my father passed away several  years ago). She is in a truly wonderful assisted living facility, but without my involvement (on pretty much a daily basis, often for several or more hours) it is clear she'd be in a nursing home, which would be a fate worse than death to her. Her doctors have told me that if I decide to go with microsurgery, I should do it as soon as possible, as she's been stable for a while (chemo has given her some benefit, though she's only able to tolerate a relatively small dose) and the cancer in her bones has spread to some new places. If I time this wrong, her decline and/or death could occur when I don't have the stamina to assist her as I have been doing; on the other hand, if she dies before I get the surgery done, it will be another 6 months till I can conceivably consider going AWOL for surgery (as funeral arrangements, estate settling, etc will all fall to me...), and I will be jeopardizing my own health as the AN grows bigger.

2) The initial AN was most likely a radiation-induced growth--when I began to lose my hearing as a small child (after recurrent ear infections due to an undiagnosed allergy,, of all things!), the treatment of choice happened to be sticking my wee little noggin in an Xray machine and irradiating it! (How clever...) Dr Martuza agrees there is a likely connection, especially since my MRI shows abnormalities in the bone around my ear consistent with radiation. Though he says he knows of cases where radiation-induced meningiomas have been treated with radiosurgery, I'm still a bit leery of that approach because of my history. (On the other hand, if radiosurgery is the wave of the future, and the risk, trauma, and lengthy recovery neurosurgery involve are destined to become a thing of the past, I feel awfully stupid being such a Luddite...)

3) I am positively phobic about MRIs (first one I had was half an hour before my initial surgery, to get a more precise picture than the previous CAT scan afforded, and it was probably the most terrifying experience of my life...), and have tolerated them in followup solely because I know it's just that--a followup! If I had to get MRIs regularly to track a mass that was ALWAYS in my head, I don't think I could handle the stress!

So, as you can see, I am trying to evaluate 6 of one against a half dozen of the other, and coming up with a headache and no decision every time!

I'm sorry this is so long-winded--I'm so discombobulated I can't even figure out how to cut to the chase (which, basically, is: I would love to hear about how folks--especially those with recurrences--arrived at their decisions, and if anyone can point me to research that might help me make mine, I'd be eternally grateful!)

Thanks so much...

Carrie

[LarryS]

Carrie - I am sorry for all the things you are going through. Maybe I can make a couple of suggestions. 1) Take care of yourself within the next six months. 2) We did funeral planning for my mother-in-law with the funeral home with her sitting right there, telling exactly how she wanted things to be. I know that not everybody will do this sort of thing, but you could go ahead on your own while you have the stamina. It only takes a couple of hours and it was such a huge help when that time came. 3) Have you heard of an "Open MRI". This is what my husband has to use as he was so claustrophobic with the first one that he passed out. (This was how we found out he had a tumor.) Anyway, the open MRI is not so confining and it usually takes about 45 minutes for them to get all the "slices" they need. If we had it to do all over again, in his case because it was such a big tumor, 4.5-cm x 3-cm and they said he had probably already had it for 20 years,  we would have had the surgery first and then the Gamma Knife treatment. Trust in God and He will get you through all of this and remember there are those out here who care.

[cmp]

thank you for your kind words and suggestions, LarryS!

I have vague memories of having heard of the open MRI before--it is definitely worth investigating further (especially now that I know I have some monitoring in my future...)

About the funeral planning--my mother has actually made arrangements with the funeral home/cemetery in FL where my father is buried. Figuring out the logistics of how to transport her for burial there (plus how and where to assemble family--who are spread all over the country, with no one but a couple of cousins in FL...--for a ceremony) is going to be a challenge, and you are so wonderful to point out that it would be a good idea to begin preparing and planning now.

Oy!

[LarryS]

This is all going to work out. I found out that you just have to put one foot in front of the other and keep on going. It will all work out for the good. I think the decision making and all the waiting around we had to do from doctor's appt to doctor's appt as well as the "unknown" was worse for us. That has been four years ago. Another thing to remember, there are an awful lot of people out here who have had really wonderful, amazing results. It just takes what seems like a whole lot of time. Hang in there.

[Sheryl]

Carrie - I am so very sorry for what you are going through but I can certainly "identify" - we also have the geography in common as we are from Massachusetts and now split our time between Florida and Cape Cod.

Briefly, I am a breast cancer survivor of four years but it is always on my mind.  Two years before my BC diagnosis I was found to have a benign 9th cranial nerve schwannoma - almost like an AN but on another nerve.  I have waited and watched for 6-1/2 years and have very little growth or symptoms.  In between my husband developed another type of benign brain tumor called a meningioma.  He had it removed at the same time I was going through chemo and radiation.  Unfortunately his grew back and he opted this past fall for cyberknife done at the Beth Israel Hospital in Boston.  Except for some swelling, he was doing quite well but now, after extensive testing, it seems there's a kidney problem - not at all related to the brain tumor.  We are waiting for a consult with a specialist.  Both of my parents have the diagnosis of Alzheimer's and my brother (age 56) is having memory problems.  I have been trying in my "spare time" to seek out alternative living conditions for my parents as this situation will not get better.  These definitely are not the "golden" years.  

As to the MRI's - have you asked for a light sedative ahead of time?  Most doctors understand and will oblige.  

Funeral homes and cemeteries can also handle a multitude of things for you but anything you can do ahead of time would be a great help - don't try to do everything yourself.  

You certainly have the best M.D.'s - Al Rhoton was mentioned to me by many professionals when I found my tumor 6-1/2 years ago and being close to Boston with its great hospitals gives you many choices.  No one can tell you what to do.  There is a Cyberknife board (www.cyberknifesupport.org) where doctors skilled in this type of radiosurgery will answer your questions and if you send them your MRI's and reports, will give their opinion.  We've also sent records to Dr. Chang who is both a skilled neurosurgeon and uses Cyberknife at Stanford and he will give you an unbiased answer.

I wish you luck - you certainly have a full plate but from what you wrote, you sound like a strong person who will get through this.  Please keep us updated.
Sheryl

[MaryBKAriz]

Hi Carrie,

My heart goes out to you!!!!!!!!!!!!!! My AN is just slightly smaller and it is the first one I have had, I didn't even know this condition existed a few weeks ago. However, I do understand your dilemma REALLY well!! It touched my heart so much I did not read the responses you have gotten yet but will after I write this.

I convinced my 87 year-old Mom to move here to AZ to move in with us January 2007 so I could care for her. She has had 2 mastectomies, severe osteoporosis, COPD, heart failure, systemic lupus and rheumatoid arthritis.....and a great spirit!!!!!! She has improved in all her conditions and due to her spirit and MANY doctors visits and tlc from my family. My son has issues also, lives 2 miles from us and although he is on his own (37 yr old) he needs a lot of care that most his age do not. He has gotten off disability, though through lots of efrfort on his part. My husband is an only child and his dad is 92, lives in TX and we were trying to get him to move here, also. He has fewer health problems, but hey he IS 92! 

So I share your dilemma with weighing options. Nothing seems to jump out as a best answer. I do see that many say to take time to understand your options and it seems as though the radiosurgery is as new to you as it is to me. I too worry about radiation, my dad worked in nuclear weaponry back in the 50's. UGH! I saw one of the last bombs tested in Nevada. I am terrified of radioactivity and am a child of duck and cover. I hated my MRI because I am mildly claustrophobic, mild meaning I have even been stuck in an elevator without any anxiety but in REALLY tight spots I get very phobic. The thought of more MRIs,yuck... how claustrophobic is it with Cyberknife or Gamma knife??? Then the surgery...well as you say, risks and recuperation time, etc. nothing is even begining to stand out as an option.

I am cheering you on...stay in touch and my heart is with you.

Mary

[sgerrard]

Hi Carrie,

First, a picture in another post of me getting Cyberknife last September, for Mary, who asked whether it is claustrophobic. You can see my lying on the table; the Cyberknife Arm is on the right, waiting for Eileen to finish prepping me, so it can start moving over my head to zap me. Not claustrophobic at all. http://anausa.org/forum/index.php?topic=5262.msg47547#msg47547

Carrie, I think the one thing you should take off your list is #2, the issue with radiation. There is just no comparison between the kind of radiation you had as a child, and the precision radio-surgery they use today. They don't even put a lead vest on you, because there is no need. Maybe the childhood radiation had something to do with the AN, maybe not. And maybe surgery is a better choice for you, for that matter. But don't think "cyberknife will give me more tumors"; it won't. Check out the link that Sheryl posted.

Working out #1 is a delicate issue, I think you have gotten some good advice from others here. #3, The claustrophobia about MRIs, is a mystery to me. I just lie down, and imagine I am listening to Pink Floyd warming up before a concert. It's over in no time. I would see if you can get the open MRI, and/or get a sedative to help you relax during the scan. In fact these days, surgery patients often wind up getting about the same number of MRIs as radiation patients, so you will need to face it either way.

20 years is a long time to have a regrowth; I can certainly understand why you might have thought you were done with the thing. These ANs sure have a lot of sneaky tricks they can pull. I hope you are able to sort it all out and arrive at some kind of decision on what to do, or at least to be ready for your meeting with the doctor.

Best wishes,

Steve

[MaryBKAriz]

Good Morning, Steve

That was informative for sure! I made it through my MRI and it makes NO sense that I feel claustrophobic. I kept my eyes closed and designed art in my head.....but in a break between the sessions I asked the guy to let me out for a second....he either didn't hear me or ignored me...I had to raise my voice and he finally let me out reluctantly. After that I had a much worse time with the claustrophobia. Next time I will take something before hand and try not to get the idiot I got.

I did look at the photo of you CK before your mask was on. Do you have a photo with the mask on? If so, would you mind sharing posting it? The mask is affixed to the table??? If I am correct, how is it affixed? How long did your procedure take.? Did you have hair loss? How many sessions did you have? THANK you so much for all you inputs. It is so VALUABLE for the Newbies and while I know this is YOUR experience, every case is different, etc, etc, it is a calming feeling getting the feedback from one who has been there. I am seriously considering CK.

I too feel my small tumor, "Goldie" can stay as long as she is quiet and behaves herself. Right now she is being annoying with balance issues she gives me. I am getting used to the hearing issues. I am also thinking of GK. I have decided the wait and watch is not for me and I doubt the microsurgery is.

Thank you again for you kindness!

Mary

[cmp]

thank you all so much for your kind replies--it's so helpful to hear others' experience as I weigh this (more like, ride the seesaw on this...)

Sheryl--you are facing so many challenges at once! It's so hard to have "back burner" health questions on your mind while you deal with currently urgent situations...I really wish you and your family all the best... And thank you for the link to the CK support group--I have read through a number of the threads, and will probably post a question of my own there before long.

Steve--thanks for pointing me to your photo. When I read that radiosurgery involves a mask and/or head frame, I thought to myself "they'll have to put me under before I go through something like that". It's very good to know there's no anxiety-inducing "tube" involved in CK, at least... And thanks for distinguishing the type of radiation involved in lead-vest-requiring Xrays from that in CK--that's really important for me to keep in mind.

Mary--though I didn't go through "duck and cover" (missed it by a few years, thank goodness!), I share your distrust of radiation. I see (from another thread here) that you've decided to go ahead with radiosurgery. thanks so much for sharing your struggle figuring out how to balance everything (and I see that you, too, have more than your fair share!), and I'm so glad you've reached a decision you're comfortable with. Hope I get there soon, too!

The one thing I'm wondering, as I google medical papers ad infinitum (having this stuff literally at my fingertips is just amazing, really--when I wanted to learn more about the 7-12 anastamosis before I had it, I had to spend hours in the Ohio State University medical library reading the literature!): Are there studies that track people long term (say, for 15-20 years) after radiosurgery for ANs and similar benign cranial tumors (ie meningiomas)?

It seems radiosurgery as an alternative to microsurgery for ANs (vs just for elderly/poor risk for surgery patients) has been gaining currency only in the last decade or so. Does anyone know of any study that tracks results on the order of decades, or is that data just not available yet? (I got good 20 years out of the last time around, and since I'm not yet 50 would like to shoot for that again...)

[Jim Scott]

Greetings, Carrie:

I'm sorry to learn of all your physical and family stresses but glad you found this forum as I believe it'll prove to be a good resource for you on many different levels as you weigh your options regarding the procedure you'll choose to attack your AN re-growth.

Unfortunately, surgeons leaving a few AN tumor cells behind is not uncommon with microsurgery so re-growth is always a risk. Frankly, radiation doesn't always kill every cell either but it has a very good rate of success, as you'll quickly learn if you continue your research, as I assume you will.  If you look at my 'signature' (at the bottom of the post) you'll note that I had a rather large AN and opted for 'debulking' surgery, followed (3 months later) by FSR - multi-session radiation treatment - carefully plotted by my neurosurgeon and a radiation oncologist, designed to precisely target the remaining tumor (about 2.5 cm in my case) and destroy it's DNA, effectively stopping any future growth.  My 'retrosigmoid approach' surgery went splendidly with very few complications.  I was driving within 2 weeks and back to my usual routine within a month, happily minus the imbalance, lack of appetite and listlessness I had prior to the surgery.  The later radiation treatments were tedious (a daily 60-mile round trip to the radiation center that went on for 5 weeks, with weekends off) but painless and, most important, successful.  Subsequent MRI scans showed initial swelling (and some mild discomfort on my part) then, within a year, tumor shrinkage and necrosis (cell death), which has continued.  My next MRI is scheduled for late June, and I look forward to seeing further necrosis and shrinking.   Fortunately for me, I'm not claustrophobic so frequent MRI scans are not a problem.  If they were, I would definitely seek an 'open' MRI apparatus or insist on being administered a mild sedative prior to undergoing the scan, which is a common request and easily met. 

One caveat regarding FSR: I did have to wear a 'mask'.  It was soft plastic, firmly attached to the table and specifically molded to my face, as they all are.  It's discarded when your treatment is completed.  The mask is extremely confining and not especially comfortable but with FSR, you only wear it for about 20-25 minutes at a time and they remove it as quickly as possible.  The rationale for the firmly secured mask is to allow the radiation technician to precisely aim the radiation beams where they are supposed to be and to prevent you from moving your head and possibly causing a beam to hit a nerve. My FSR was very low 'dose'.  I've forgotten the exact number of 'rads' (Gy) but the radiation oncologist said it was as low as he could make it and still expect it to be effective.  It apparently was. 

The complicated surgery vs radiation issue is a vexing one for many AN patients and your history and family situation obviously makes it even more so for you.  Although this is clearly your decision to make, I believe that I would probably opt for radiation in your situation because it's safe and non-invasive but, to be fair, not entirely risk-free (or every AN patient would demand it).  Radiation treatment will require follow-up MRI scans.  How often will depend on your doctor's decision.  I've had many.  Now I have an MRI bi-annually and soon, just annually.  I'm not a doctor and won't presume to argue with one but I don't believe the radiation you received in childhood can be convincingly attributed to the forming of a vestibular schwannoma (acoustic neuroma) 20 years later, although it certainly is possible.  Frankly, it's all speculation.  Acoustic neuromas were found over 100 years ago (during autopsies).  X-rays were relatively new back then and rarely used.  We also didn't have cell phones, power lines, jet planes, loud music played through amplifiers and all the other sources some folks attribute to the formation of vestibular schwannomas (AN's).  We just don't know the exact cause.  Although the hearing mechanism is involved (nerve sheath), I seriously doubt AN formation is connected with the act of hearing so loud noises would not appear to be a cause.  But I digress. 

Carrie, the folks who post here are well aware that the choice of surgery or radiation, as well as choosing a physician, hospital, etc is daunting...but ultimately necessary.  You are a candidate for radiation but with your medical history may be better suited to microsurgery.  Both have risks and drawbacks, although the recovery time from radiation is shorter.  Posing your questions and concerns to a caring doctor should help you make the decisions you need to make but of course, no matter what any doctor says, it's your decision and yours, alone.  Do not allow a doctor, friends or family to make this decision for you.  Remember, you and only you will have to live with the consequences and, unfortunately (but realistically) no medical procedure can be guaranteed to be wholly successful.  Still, you have a lot to consider - but your long-term health should come first.  You'll be of little help to your mother, father-in-law or anyone else around you if you're not close to 100%.  Also keep in mind that AN microsurgery usually requires a 4-to-6-week recuperation period (some of us recover in two weeks but that is not the norm.)  Radiation offers a much faster recovery period.  I had basically no recovery period following my FSR, which seemed normal to my doctors, who said I was in the top 5% of recovery stats for AN surgical and radiation patients.  I realize that medical opnion and $1.50 will get me a cup of coffee but I offer it as an encouragement to you and an example of what a successful recovery looks like, and I have over 20 years on you! 

Carrie, we all wish you the best and will try to aid your decision-making as much as we can.  I hope this lengthy post is a part of that help. 

Jim







 

[sgerrard]

Hey Jim, that was a long one. Where is it you can still get a cup of coffee for a $1.50? 

Okay, some answers to some questions.

Long term results for radiation:

As Dr. Medbery says in the reply, this will be a FAQ on the cyberknife forum, if they ever get a FAQ. Here is a post from the ANA archives from Mark, quoting Dr. Medbery on the subject, who in turn quotes some research papers:

http://anausa.org/forum/index.php?topic=694.0

Looking up other posts from Mark (he did CK in 2001), or doing a forum search on "radiation 20 years", will get you other posts as well. The bottom line is yes. GK started in Europe over 30 years ago; the protocols have been constantly improved, so the long term results are from the earlier less effective treatments; still, 97% control after 15 years sounds good to me.

Details of CK Treatment, Mask, and Hair Loss:

3 days of treatment, about 45 minutes each.

My head was clamped to the table with the plastic mask; I don't have a photo of that, but I still have the mask as a souvenir, so here is a pic of me wearing it.

The plastic mesh is form fitted to your face, with a little pixie nose pulled out so you can breathe easily. They also mold a piece for under your neck. Resting your head on that, the mask fits snug on your face, and the holes at the bottom fit over posts on the sides of the head support.

The sensation is odd; when you don't move, you can barely tell the mask is there; as soon as you try to move your head, it grabs tight and holds it in place. If you need to, you can raise your hand, and they will instantly stop the machine (they watch every second), come into the room, and let you scratch your nose or whatever. They stopped it once for me, claiming I had moved around a little.

I'm sure I had more hair loss trying to decide what to do about it, than I ever did as a result of the treatment. As far as I can tell, I have as much as I ever did. 

Steve

[Kate B]

Mark,
Thank you for your stats.  I too, am about peer reviewed articles. 

I have great respect for UPMC (Kondziolka and Lunsford).  I trust in time, Dr. Chang will publish his data when there is enough long term data from the patients and CK.  Yes, as Dr. Medberry writes in the thread, logic suggests that the outcomes should be similiar.

Steve, you are looking rather blue in that picture:-) I should add, a masked AN Hero...Now we just need a name...Spider Man is already taken. <grins> 
Seriously, thanks for posting it.

[MaryBKAriz]

Hi Steve, blue Spiderman!

Thank you for all your information!!!

I wouldn't say that is stylin' but may be a conversation piece for Halloween.

Seriously, I GREATLY appreciate you sending the photo and the info. I do beilieve you are correct, you lose more hair worrying about the decision than in the treatment. I anticipate feeling a lot less kooky after I make the decision. I am not rushing - it will be 2 weeks Monday since I found out so I need not hurry...but it feels like a long time already! You have been so very informative. I really like to know the variables.

You take care and THANK YOU, again!

Mary

[cmp]

Jim--Thank you SO much for your very thoughtful and informative response... Between your description of the mask and Steve's picture/description, I have a much better sense of what radiosurgery might be like (the fact that it is a mesh and not something that blocks vision entirely makes a HUGE difference--I had been imagining a modern/medical version of "The Man in the Iron Mask"!) 

I'm so glad to hear that your treatment has been successful--sounds as though it has been a very long haul for you! I especially appreciate your perspective on the decision-making process itself--what you've said is SO important (and so easy to lose sight of)--I believe I will be rereading your post often, whenever I start to come a bit unglued.   

Steve--Thanks very much for the picture and additional info about the procedure. Frankly, if not for that pixie nose, wearing a confining mask would still be a no-go for me--I really had been imagining something where breathing would be very difficult (and as I'm asthmatic, difficulty breathing is not something I smile upon!)

And thanks for the link to Dr Medbery's remarks, and the tip on how to search the forums for more info on long term radiation effects. There's so much information here--navigational tips are priceless!

[Omaschwannoma]

This post is a good reminder to me to be vigilant with my MRI's as one, potentially, is not "out of the woods running free" after 10 years post surgery as I've heard.  Thank you Carrie for your posting.  I am sorry you are dealing with this problem, but very happy you have found good information to help you in your decision.  With this support group I am never really alone dealing with my AN.  Deciding is never easy and hoping you have found some comfort with your treatment plan.