ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: IZD30 on July 03, 2016, 09:28:35 am
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Hello Everyone,
I have recently been diagnosed with AN; my tumor size appears to be around 2cm. I am considering radiosurgery since I have tongue and facial numbness, and my local doctors told me that any surgery may cause permanent facial nerve damage. This forum has been really informative, but I also noticed that in some members' signature blocks, the tumor size after GK or CK treatment appears to be bigger than the size before the treatment. I am curious why is this the case? Shouldn't the tumor shrink in size?
I am 30-year old female, so my priority is to preserve facial nerve. I am looking at all options to lower my chances of permanent facial nerve damage after the surgery. Any advice is very much appreciated since I am just learning about different treatment options and the long-term effect. Thanks.
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They swell after radiating as part of the degenerative process--a good thing. This can happen through two years. Most doctors will talk about stablizing them, where they never need to be treated. Better outcomes are when they undergo apparent necrosis (my doctors have said that is not necessarily the correct term) where the central part darkens, which many suggest is the tumor dying. I had very similar symptoms, which led my doctors to believe it involved the facial nerve. In that case, radiation is arguably the best treatment choice since you reduce the chances of damage to the facial nerve by surgery. Some surgeons can handle dealing with the facial nerve, but damaging that nerve is disastrous. Every consult I had said use radiation--Stanford, Pittsburgh, UVA, and a neurosurgeon who had done around 800 ANs.
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My Doctor explained to me that as the tumour cells die they start to lose control of their intracellular processes. The tumour cells are no longer able to control the amount of water within the cell, and as a result each individual cell gets bigger. The term necrosis is used a lot the correct term is actually apoptosis (programmed cell death). The reason the AN looks darker in the middle is because of increased water and reduced blood flow within the tumour.. If it doesn't look darker in the middle.
Dont worry. One study showed that seeing a dark centre to the tumour has absolutely no bearing on the success rate..
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My Doctor explained to me that as the tumour cells die they start to lose control of their intracellular processes. The tumour cells are no longer able to control the amount of water within the cell, and as a result each individual cell gets bigger. The term necrosis is used a lot the correct term is actually apoptosis (programmed cell death). The reason the AN looks darker in the middle is because of increased water and reduced blood flow within the tumour.. If it doesn't look darker in the middle.
Dont worry. One study showed that seeing a dark centre to the tumour has absolutely no bearing on the success rate..
Agreed.
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You can see the regression of a dying tumor after radiation. Note that swelling occurs within the first year and shrinkage occurs after 2 and 3 years. YMMV.
http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg
This next site shows the regression of a variety of tumor sizes and explains a lot about radiosurgery.
http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO
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It's amazing how big some of these can get. Did you see anything conclusive at your 6 month? Looks like a slight difference.
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Thanks for the links Arizona.
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I'll chime in here and say that not all tumors swell after GK or CK. Only a certain percentage do, some more than others. My AN never did swell up. The AN was reduced in dimension at every follow up MRI. This of course does not mean you won't have any post treatment symptoms and individual results can vary.
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Very true Rupert. Depending on which study "Transient Expansion" happens in around 30-60% of cases.
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Thanks arizonajack, for the links. Very helpful!
MG
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You can see the regression of a dying tumor after radiation. Note that swelling occurs within the first year and shrinkage occurs after 2 and 3 years. YMMV.
http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg
This next site shows the regression of a variety of tumor sizes and explains a lot about radiosurgery.
http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO
way to go, Jack! What excellent sources of information! They've been added to my dossier.
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Hi IZDA30,
I had several symptoms develop pre and post treatment, most of which have resolved. Since you mentioned having tongue and facial numbness, I thought I'd chime in with my experience.
My AN was 2.4cm when I had Gamma Knife. At the time that I had GK I was experiencing numbness at the corner of my mouth and on the tip of my tongue. Within roughly 3 months post treatment I noticed the numbness was gone - it has not returned and I'm coming up to 3 years this Sept.
Cathie.
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Thanks everyone! This is very helpful, and I have a better idea of what to ask the doctors now. My concern is that if I am one of those whose tumor will swell, seems like my facial numbness can get worse. I'm hoping that won't happen.
Echo, Good to hear your experience. At one point I have given up on fixing my tongue and facial numbness. I have heard that whatever symptoms I have going into the radiosurgery, I will probably come out the same. Your experience is encouraging.
I am talking to different neurosurgeons now, and it seems like I am just getting contradicting messages regarding my numbness and the risks of facial palsy for radiosurgery vs. surgery. This is going to be difficult.
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I disagree that what you have prior to radiosurgery you have afterwards.
My balance and hearing have improved.
Facial numbness comes from the trigeminal nerve not the facial nerve
Facial nerve preservation statistics are far better with radiosurgery.
The vague head. Plugged ear feeling, all gone.
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IZD30:
Your facial symptoms might increase after radiation, but this would almost certainly be temporary. One reason for an increase in symptoms would be tumor swelling, which could put more pressure on the trigeminal nerve. It is extremely rare for tumors to fail to shrink back to their pre-treatment size after initially swelling. And sometimes they shrink even more. If I remember correctly, roughly 25% of Dr. Chang's CK patients see "gratifying shrinkage" eventually; i.e., the tumor becomes significantly smaller -- about 25% smaller on average for the group -- than it was at the time of treatment. I was fortunate that my tumor shrank around 70% in volume in the couple of years following CK -- but not before it initially swelled from the radiation treatment. The temporary swelling increased my symptoms as the tumor put more pressure on my balance and hearing nerves. Thereafter, as the tumor shrank, my balance improved dramatically as the pressure on my vestibular nerve lessened. Bottom line: Your symptoms may increase temporarily following radiation treatment(s), but the odds are overwhelming that they will eventually revert to how they were before you were treated or possibly even improve further (possibly dramatically). I regained about 90% of my balance within a couple years or so of getting CK. YMMV.
Best wishes,
TW
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If you have access to pub med, search "lunsford ld and facial nerve ". He has published a number of large clinical studies (one had 800 patients) on outcomes of facial nerve after radiation. Short story, it is very safe.
J Neurosurg. 2013 Dec;119 Suppl:195-9.
Radiosurgery of vestibular schwannomas: summary of experience in 829 cases.
Lunsford LD, Niranjan A, Flickinger JC, Maitz A, Kondziolka D.
"Between 1987 and 2002, some 829 patients with VSs underwent gamma knife surgery (GKS). Dose selection, imaging, and dose planning techniques evolved between 1987 and 1992 but thereafter remained stable for 10 years. The average tumor volume was 2.5 cm3. The median margin dose to the tumor was 13 Gy (range 10-20 Gy). No patient sustained significant perioperative morbidity. The average duration of hospital stay was less than 1 day. Unchanged hearing preservation was possible in 50 to 77% of patients (up to 90% in those with intracanalicular tumors). Facial neuropathy risks were reduced to less than 1%. Trigeminal symptoms were detected in less than 3% of patients whose tumors reached the level of the trigeminal nerve. Tumor control rates at 10 years were 97% (no additional treatment needed)."
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Hey, that's my team. :) :) :) :)
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I'm presuming another dose would be safe, however, I wonder if for CK, they factor in other radiation exposures in the aiming process. GK uses a fixed source with many beams, CK has a mobile source.
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That's awesome Tumbleweed! Good to hear some positive news with your CK treatment. :)
MG
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I know the thyroid gland sequesters iodine very quickly and if they treat with isotope then the radiation stays very local and won't hit surrrounding tissues. For CK and GK, it is a different type of radiation, so it hits everything, that's why they come at the tumor from differnet angles. Found a scientific article on W&W. Did you get treated yet, or still waiting?
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I think when it gets near the cochlea you have to be careful. The closer it gets, the harder it is to treat without doing a lot of damage. Here are two papers. I know of Lunsford, but I didn't realize he published this much. Definitely the world authority on gamma knife. Radiation almost always damages hearing. That is a given. However, there is a good chance, depending on size, location, and current damage that you retain some hearing. What I thought was important is that you lose it gradually, so your brain can adjust. I think the literature says that if you have hearing loss, it is rare that you will improve it after treatment. In contrast to radiation, depending on the surgery type, it can result in 100% loss.
Neurosurg Focus. 2012 Sep;33(3):E8. doi: 10.3171/2012.6.FOCUS12192.
The newly diagnosed vestibular schwannoma: radiosurgery, resection, or observation?
Kondziolka D1, Mousavi SH, Kano H, Flickinger JC, Lunsford LD.
Author information
Abstract
Management recommendations for patients with smaller-volume or newly diagnosed vestibular schwannomas (< 4 cm(3)) need to be based on an understanding of the anticipated natural history of the tumor and the side effects it produces. The natural history can then be compared with the risks and benefits of therapeutic intervention using a minimally invasive strategy such as stereotactic radiosurgery (SRS).
METHODS:
The authors reviewed the emerging literature stemming from recent recommendations to "wait and scan" (observation) and compared this strategy with published outcomes after early intervention using SRS or results from matched cohort studies of resection and SRS.
RESULTS:
Various retrospective studies indicate that vestibular schwannomas grow at a rate of 0-3.9 mm per year and double in volume between 1.65 and 4.4 years. Stereotactic radiosurgery arrests growth in up to 98% of patients when studied at intervals of 10-15 years. Most patients who select "wait and scan" note gradually decreasing hearing function leading to the loss of useful hearing by 5 years. In contrast, current studies indicate that 3-5 years after Gamma Knife surgery, 61%-80% of patients maintain useful hearing (speech discrimination score > 50%, pure tone average < 50).
CONCLUSIONS:
Based on published data on both volume and hearing preservation for both strategies, the authors devised a management recommendation for patients with small vestibular schwannomas. When resection is not chosen by the patient, the authors believe that early SRS intervention, in contrast to observation, results in long-term tumor control and improved rates of hearing preservation.
Second paper.
Int J Radiat Oncol Biol Phys. 2016 Jun 1;95(2):729-34. doi: 10.1016/j.ijrobp.2016.01.019. Epub 2016 Jan 19.
Early Radiosurgery Improves Hearing Preservation in Vestibular Schwannoma Patients With Normal Hearing at the Time of Diagnosis.
Akpinar B1, Mousavi SH2, McDowell MM3, Niranjan A3, Faraji AH3, Flickinger JC4, Lunsford LD3.
Abstract
Vestibular schwannomas (VS) are increasingly diagnosed in patients with normal hearing because of advances in magnetic resonance imaging. We sought to evaluate whether stereotactic radiosurgery (SRS) performed earlier after diagnosis improved long-term hearing preservation in this population.
METHODS AND MATERIALS:
We queried our quality assessment registry and found the records of 1134 acoustic neuroma patients who underwent SRS during a 15-year period (1997-2011). We identified 88 patients who had VS but normal hearing with no subjective hearing loss at the time of diagnosis. All patients were Gardner-Robertson (GR) class I at the time of SRS. Fifty-seven patients underwent early (≤2 years from diagnosis) SRS and 31 patients underwent late (>2 years after diagnosis) SRS. At a median follow-up time of 75 months, we evaluated patient outcomes.
RESULTS:
Tumor control rates (decreased or stable in size) were similar in the early (95%) and late (90%) treatment groups (P=.73). Patients in the early treatment group retained serviceable (GR class I/II) hearing and normal (GR class I) hearing longer than did patients in the late treatment group (serviceable hearing, P=.006; normal hearing, P<.0001, respectively). At 5 years after SRS, an estimated 88% of the early treatment group retained serviceable hearing and 77% retained normal hearing, compared with 55% with serviceable hearing and 33% with normal hearing in the late treatment group.
CONCLUSIONS:
SRS within 2 years after diagnosis of VS in normal hearing patients resulted in improved retention of all hearing measures compared with later SRS.
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I must keep an open mind, especially with so many controversies regarding neurosurgery and surgery in general. There are so many scandals in the newspapers.
Oh Cityview, you've been watching too much CSI again.
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I disagree that what you have prior to radiosurgery you have afterwards.
My balance and hearing have improved.
Facial numbness comes from the trigeminal nerve not the facial nerve
Facial nerve preservation statistics are far better with radiosurgery.
The vague head. Plugged ear feeling, all gone.
That's reassuring. I was under the belief once hearing is gone...it is gone forever.
My facial tingling is the only symptom that completely went away after GK, only to be replaced with fatigue, new balance issues, dull headaches and decreased hearing.
My tinnitus, which existed prior to GK, still persists in all its constant glory.
My tinnitus reminds me of an episode on that television show "Chicago Med" where the patient was constantly hearing his heartbeat in his ear. He will do anything to relieve the anxiety.
In the end he has to change his way of thinking.
Anyways, I'm slightly 4 months post Gamma Knife.
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Hi IZD30
I'm sorry you are dealing with those trying issues, which surely cause concern. I’m sorry you are dealing with this enigmatic situation of how there are so many varying ideas about how to treat it.
My spouse was treated in 2013 with 28 sessions of fractionated Proton Therapy at the The Massachusetts General Hospital Francis H. Burr Proton Beam Therapy Center in Boston- for a 1.5 cm vestibular schwannoma , also known as a acoustic neuroma. Outcome - very good. No swelling of the tumor after proton treatment. Read more about this by looking at my posts under the alias of Keep Smiling. -Usually you send your MRI to a Proton Center and ask for consideration (for us it was free of charge) At a proton therapy center, a team of doctors evaluates and decides (usualy within 2 weeks) whether the patient is ideal for proton treatment and then a consultation is scheduled. The team of docs obviously considers many variables. Not all Acoustic neuroma patients are considered to be ideal candidates for proton therapy. In 2013 when we studied this subject I believe it was stated that if the tumor is larger than 2 cm that this is considered too large for proton treatment. I would have to research it to discover current philosophies. (for example, does complete deafness in one year=good proton candidate?) For one reason or another it seems that the docs at the proton centers do not always accept patients with acoustic neuromas.
My advice: Be your own best advocate. Do your research. Look up current studies. Weigh the pros and cons. You can type in certain words that are important to you personally and you can look up current medical studies. EXAMPLE: http://www.ncbi.nlm.nih.gov/pubmed/24725695 is one study. Just look up studies. Go here: http://www.ncbi.nlm.nih.gov/pubmed/?term=vestibular+schwannoma++proton.
Don’t look up only what I suggested- You can use the pubmed search tool (: http://www.ncbi.nlm.nih.gov/pubmed/) and you can look up studies yourself. Learn how to read the studies. Learn the medical lingo. Get help from google about things you don't understand. Try hard and find patients who had bad outcomes from various treatments.
- Is Proton BEAM treatment (which is new and was developed recently) be used in the near future for vestibular schwannomas? Find out which Proton Centers offer this and for which conditions it is meaningful and efficacious.
- Would more AN patients consider Proton therapy if it could actually shrink the tumor rather than stopping tumor growth? From our understanding, the tumor remains stable and doesn’t growth after Proton Therapy.
-Would more AN patients be admitted for proton therapy if there were more Proton Centers? Would more AN patients consider Proton Therapy IF it would be more convenient and less expensive?
-There are many proton therapy centers being built around the world. (see http://www.proton-cancer-treatment.com/proton-therapy/proton-therapy-around-the-world/clinical-proton-centres-being-built-and-planned-centres/) The construction of these centers requires significant $ investment. If you research, you will find some negative comments about how Proton Therapy has doubtful outcomes for patients with certain problems, such as prostrate issues. Consider how proton therapy could be efficacious for one medical condition and not for another, and also possible biases of the commenters. Research this and try to uncover unbiased statistics and facts. Get on the Internet and research current info with through a critical lens.
-Will the proliferation of new proton centers threaten the revenue stream of medical providers of cyber knife, gamma knife and neurosurgery? Is that happening now? The number of patients who have vestibular schwannomas and who then get Proton Treatment seems to be small. Other treatments seem favored, but it could be wise to ask if this anti-proton therapy bias is because of people suffer with poor outcomes after Proton Therapy or if it is due to other reasons.
- Time slots are highly coveted for proton beam treatment. It seems the teams of doctors who review case studies and decide whether a patient is a good candidate for Proton therapy MAY favor accepting other "needier" patients- for proton therapy, rather than AN patients. For example, Proton Centers are filled with children with cancers. It may well be that the AN patients are shuffled off to other treatments since there are other ways of treating acoustic neuromas are available (Gamma Knife, Cyber knife, etc).
The hardest part of all this is that the doctors don't agree and they contradict each other. We got opinions from 14 doctors and not one of them offered similar opinions. In the end we relied on studies and anecdotes. There are AN patients who had proton therapy and who are now very well. It takes effort to do advanced searches at the discussion forum and find these people and then to schedule telephone calls and actually talk to them-- but that is exactly what we did. We also spoke to other patients who had other types of treatment. One kind AN forum member gave us this advice: Only select a treatment for yourself that you think you would select for your child.
It is a tricky situation. I sincerely hope you find an excellent solution. You will be in my thoughts. Please research and ask lots of questions. Above all- stay positive. Best of luck as you make decisions.
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It's only natural, and human nature, for people to favor the treatment they received or that their family member successfully underwent. For example, people who had success with proton therapy will naturally sing its praises. People who had success with Gamma Knife radiation will do likewise, and people who had a great outcome with middle fossa microsurgery will undoubtedly do the same.
Earlier this year, when I had one of my many phone consultations with Dr .Schwartz from the House Clinic in Los Angeles, he said he has seen "bad outcomes" with proton beam therapy. He has also seen bad outcomes with GK, CK, and microsurgery.
Nothing is guaranteed.
Like KeepSmiling said, it's up to each individual to look past the marketing and personal bias others advocate with good intentions, and select the appropriate treatment plan for your unique individual case and comfort/risk level based on your research and lifestyle factors.
If 14 doctors can't agree, then it's obviously very difficult for a lay person to make the decision especially when there are so many conflicting points of view.
Best wishes.
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I would suggest getting opinions until you are tired of getting opinions. A really good opinion is from someone who uses both--surgery and radiation. That will be as close to unbiased as you can get. Next best would be an AN center that does both, but keep in mind surgery is more expensive and therefore a better return. From each opinion you can get a little bit of new knowledge and a lot of overlap. I wrote a list of questions, and they actually like to hear tough questions.
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I would suggest getting opinions until you are tired of getting opinions. A really good opinion is from someone who uses both--surgery and radiation.
I wholeheartedly agree. I got 6 opinions before settling on CK. And actually, all six doctors -- including one at House Ear Institute, which is famously pro-surgery -- recommended radiation for my treatment after I expressed a strong desire to retain my hearing. (They all agreed that micro-surgery would leave me deaf in one ear, as the translab approach was the only surgical option for me.) It was amazing to me how fast some doctors were to dismiss total hearing loss as a major consideration in treatment choice until I adamantly stated my priorities.
To me, the most important question was: what are the potential outcomes and side effects, *in percentage terms*, for each type of treatment? Doctors who initially recommended microsurgery, when pressed, admitted that in my case I had about a 33% chance of permanent facial paralysis if I went the micro-surgery route vs 1% chance from CK. Just don't get an opinion; make them put a number on it. You'll have a much firmer idea of your potential outcome if you hear "you have x% chance of this side effect" vs "your chances are good that you won't have this side effect."
Ask a lot of specific questions. Consult a lot of doctors. You'll have a clearer picture of your options and the pros and cons of each.
Best wishes to all,
TW
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Hi I am 5 years post CK. all along my AN has either gotten smaller or stated same. But in the past 5 months since my last MRI I developed Trigeminal a Neuralgia. A recent MRI showed some edema around the AN AND a bit if tumor growth. Went from a stable 2.2 x2.2x2.1 to 2.7x2.6x2.1. Is this common after 5 years?? I do have an appointment with the Cyber knife facility to follow up. Any help with this would be appreciated. Thanks!! Joan
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Hi, Joan:
So sorry to hear about your tumor growth. It is not common. The best CK practitioners cite only a 2% chance of regrowth at any time in the future following CK (roughly equal to the chance of regrowth after microsurgery).
As you didn't specify, I'm guessing (this is indeed a guess, so please take it with a grain of salt) that the second of the three new measurements you provided (2.6 cm) is the cranio-caudal measurement (that taken along the vertical axis). The 0.4cm increase in dimension along that axis would explain your trigeminal neuralgia, as the vertical expansion would tend to press upward against (lift) the trigeminal nerve in the cerebellopontine angle (the triangular space between your ear canal and brain stem). I hate to say this, but you're probably going to need your AN to be treated again.
It would be really valuable to other forum members if you could please let us know which doctor and medical facility provided your initial CK treatments.
Best wishes,
TW
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Dear TW, thanks so much for your quick response. Yes I'm thinking I will Have to be retreated too. I'm hoping I can have CK again otherwise I'm guessing it would be fractionated radiation over several days or more. Had CK at Winthrop in Mineola, NY. Dr Jonathan Haas. Again, thanks, and please let me know any recommendations that you have regarding a retreatment. Joan
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I would definitely contact Dr. Schwartz at the House Ear Clinic in Los Angeles. He performs both Gamma Knife and traditional microsurgery, and has experience treating "radiation failures." He offers free phone consultations when you mail in your MRI and information.
Best wishes.
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Thanks very much. Has anyone on the forum had to be retreated.? I'm just hoping I can have the CK rather than any type of surgery. So bummed out. Joan
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Hi, Joan:
I PM'd you in regards to your question about pretreatment with CK.
Best wishes,
TW
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Hi TW yes I received. Again, thanks so much. Most appreciated. Joan
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If your heart is really set on "retreating with radiation", then I would certainly contact as many radiation specialist throughout the country as possible to find out if that's possible, and their opinion for this delicate and more complicated matter.
Here are some of the top 8 places for radiosurgery, and the best neurosurgeons in the USA to start you off. I would simply mail a copy of your most recent MRI and medical history for their free consultation over the phone.
Dr. Lunsford - Gamma Knife at UPMC Pittsburgh, PA
Dr. Chang - Cyber Knife at Stanford, CA
Dr. Kondziolka - New Jersey, Manhattan, New York
Dr. Sheehan - Univ. Virginia - Gamma Knife - UVA
Dr. Schwartz - House Ear Clinic - Los Angeles, CA
Dr. Friedman - Keck Univ- California
Stephen Tatter and Michael Chan - Wake Forest University North Carolina - Gamma Knife
Clinton A. Medbery, III, M.D. Southwest Radiation Oncology - Oklahoma
And perhaps your local Gamma Knife and Cyber Knife specialists
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Thanks very much. But regarding surgery. Isn't that a very long heard 7 hour surgery ??
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I believe if you are to get a second round of radiation they will do a PET scan to determine how much of the tumour is dead and how much is alive.
It could be that only a small portion of the tumour is active and that is the part they will treat. Not the whole tumour again.
When people get AN's retreated its normally not the whole tumour.
This reduces radiation doses and complications