Re-treatment - any advice??

[JJ2011]

Hi all,    Thanks in advance for any responses to follow - I'm finding this forum, and the Cyberknife patient forum really helpful as I decide what to do.  Any input, past experience or advice on any aspect of below is certainly appreciated.  Also, don't shy away from being technical in your responses as I'm well versed in the medical/radiation fields.

I'm dealing with a failed radiotherapy - which was treated in 2006 using Novalis Brainlab.  My tumor has begun to grow again and is now up to around 2.1 cm and my symptoms are getting worse. 

Right now my hearing on the AN side is not great but I really like having at least a little bit.  I can distinguish where sounds are spatially and can hear, although at decreased volume, most peoples voices except some high frequencies.  A couple times my hearing went out completely for a few hours and it was very unpleasant.  I was out with some people and I couldn't hear myself think , let alone what others were saying.  I cherish my social life - going out with friends and to parties, and social situations etc and single-sided-deafness seems like a life-changer that I don't want.  I'm 28 and single so enjoying quiet time with the wife from now on is not an option.  The other issue is that I am blind in the opposite eye.  Therefore if I lose my hearing in the left ear - I'll have to tilt my right ear and eye toward who’s talking to me, which means I wont be able to look at people while I talk to them...ya I know! 

SO - theres surgery.  Given the size of my tumor I doubt I'll find a surgeon that would give me as much as a 50-50 in terms of hearing preservation.  Surgery would pose a risk for facial nerve issues (28 and single remember!) and I assume(pls correct me if I'm wrong) problems with my left eye - my only working eye. 

Then there's partial surgery.  Anyone think that doing a partial resection/debulking of the tumor would make sense to do, If they could give a good chance at hearing preservation?  I assume they could cut allot of the tumor out to relieve the pressure on other brain structures, while avoiding the nerve.  Then I could do CK or GK later to get the remainder.

Then there's cyberknife.  I could certainly still lose my hearing for sure.  I would assueme that the ability to preserve it is dependent on the amount of hearing that I have now - see above.  Has anyone out there has a second radiation therapy/radiosurgery treatment?  I've seen some literature that it is indeed done, and has been successful.  I've heard the surgery justification that if the first radiation treatment failed why expect it to work the second time.. -- however while they are both radiation treatments they are actually quite different.  The first treatment was highly fractionated - to 30 treatments I believe, and treated as IMRS (basically a more sophisticated way of shaping dose, as opposed to using stereotactic cones or open beams)  The reason this was chosen was the optimal sparing of normal brain structures and hearing.  CK on the other hand will be collimated with cones, which I bet is more reliable, dosimetrically, then using IMRS - which relies on accurate small field dosimetry.  Also a regimen of 3-5 fractions, as I'm reading is generating a higher rate of tumor control than the highly (30) fractionated treatments.  It appears that a small number of fractions is radiobiologically better for treating this tumor.

Any thoughs or suggestions, or incorrect logic in my reasoning on any of these issues?  I’d like to decide what to do within the month to get this monkey off my back.

Thanks,
Justin

[msuscottie]

Hi Justin,

I can somewhat relate to what you're going through. I was diagnosed at 28 and my biggest fears were hearing, facial paralysis and so on. I did lose all hearing in my left ear after surgery #1, which was just to debulk the tumor. This was before they even cut the nerve (that happened in surgery #2). I don't think there is any sure-proof way to know that you'll preserve hearing or facial nerves, but that's where you have to lean on your Doctors.

Just be honest with them and tell them what's important to you. I told my Docs before surgery #1 that if my facial nerve was going to be comprimised at any time, close me up and we'll come for another surgery later. I just prioritized with them... "here's whats most important to me... 1) facial nerve, 2) hearing, 3) so on and so on"

The unfortunate truth is that you just don't know. The most important thing is to live a long life and that should be of utmost importance. Find good Doctors and make them earn their money. Talk to them and make them talk to you. They are, after all, there to help you.

See what your options are and then go from there. Go luck to you. Feel free to contact me if you have any questions.

[leapyrtwins]

Hi Justin.  Sorry to hear about your re-treatment.

Most of the time failed radiation means surgery, at least that's what I've always heard.

I don't think any doctor is going to debulk an AN that is only 2.1 cms - most of the time debulking is done for large ANs (4 cms or more).

As for your hearing, I'd look into a BAHA (bone-anchored hearing aid).  Check out www.cochlearamericas.com or this link http://www.umm.edu/otolaryngology/baha.htm to get an idea of what I'm talking about.

My AN surgery left me SSD (single-sided deaf) and the BAHA has been incredible.  If you end up with one, you'll be able to enjoy quiet time (and even not so quiet time) with your wife again.

Good luck,

Jan

[Jim Scott]

Hi and welcome, Justin ~

I'm sorry to learn of your failed radiation treatment but it does occur, albeit fairly rarely, as you know.  Small comfort when you become part of the statistic, I'm sure.

You seem to be quite knowledgeable regarding radiation treatments, which is a plus.  You also have some issues (blind in one eye) that will complicate your decision.  I won't venture any substantive suggestions because (a) I'm not a doctor and (b) in the final analysis, only you can decide on the best treatment for your AN, under the existing circumstances. 

For whatever it may be worth, here is my AN story.  I presented with a full-blown 4.5 cm AN in May, 2006.  My neurosurgeon, a brilliant, compassionate physician, after considering my priority was to avoid facial paralysis, decided on a course of debulking followed by irradiation (FSR).  He considered this approach would be the least destructive and had the best chance of succeeding while respecting my concerns regarding facial nerve damage.  At the time, due to my procrastination in addressing my symptoms, I had effectively lost all hearing in my left ear, so hearing preservation was not a priority, although it was not ignored.  Due to tumor location and placement (pressing hard against my brainstem) my neurosurgeon opted to use the Retrosigmoid approach for the debulking surgery.  He also cut off the tumor's blood supply.  The result was a successful operation with no complications that reduced the tumor from 4.5 cm to approximately 2.8 cm.  My hearing did not improve, which was not a surprise, just a fond hope, at best.  My surgical recovery was swift and complete.  After a 90-day 'rest period', my neurosurgeon teamed with a radiation oncologist to 'map' my FSR, again stressing facial nerve protection.   Under this treatment plan my remaining tumor received approximately 27gy of radiation over 26 separate sessions (about 40 minutes each).  I experienced absolutely no ill effects from the radiation.  Subsequent MRI scans showed tumor necrosis and some shrinkage within a year.  My symptoms disappeared immediately following the surgery and today, 4 years later, I'm doing great.  My only regret is being four years older.  However my neurosurgeon stated that he couldn't fix that  and that he had the same problem (he's about my age). 

Frankly, you'll probably want to consult with a few neurosurgeons and radiation oncologists to reach a treatment decision but one constant will be that with ANs, there are no guarantees.  Yes, surgery could cause real problems and so could radiation.  That is an unavoidable risk.  To avoid running into physician bias, try to consult doctors that perform both procedures.  Most of all, only consider doctors with extensive AN experience.  I believe that is crucial.  I also believe my neurosurgeon's years of experience performing AN surgery was a major factor in my successful outcome.  I hope you'll have a similar story a few weeks (or months) from now.

Jim