ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: dalemccl on April 12, 2017, 08:39:05 pm
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Hello, I have previously posted a few questions here, leading up to my decision to have CyberKnife treatments for a right-side AN. The first of my 5 treatments is tomorrow, April 13, 2017. They start on a Thursday, skip the weekend, and end next Wednesday (Th-F-M-Tue-W). I found it helpful to read the posts here where people posted updates as they went through their AN journey, so I thought I would post an on-going thread as I progress through the treatments and the months afterwards. Hopefully it will be helpful to someone at some point in the future, just as the posts of others have been helpful to me.
First the background.
I experienced sudden, unexplained hearing loss in my right ear about 3 years ago (can't remember exactly when). I called my ENT group for an appointment but the ENT doctor I have seen in the past for allergies and sinus infections, and whom I like and trust, was booked up, so I was given an appointment with the first available doctor. That ENT told me the loss was caused by a virus and would be permanent - nothing can be done about it. He gave me a prescription for prednisone but said it probably wouldn't help. (He was right about that. It didn't help. So I accepted the hearing loss and life went on.)
About a year or year-and-a-half later, in September 2015, I saw my regular ENT doctor for something unrelated, and during the visit he studied my chart and history, and kept saying "very interesting". I asked him what was interesting and he said "I don't think your hearing loss was caused by a virus. I think it may be neurological. We need to get an MRI." I got the MRI in October, 2015, and shortly afterwards he called me to tell me I have an acoustic neuroma on the right side. He explained a little about it, but said he is not a expert in these tumors and was referring me to a local neurotologist who is.
I met with the neurotologist later in the month. He told me the tumor was 16 mm x 9 mm, which would be near the low end of medium-sized. My only symptoms were hearing loss in the right ear of about 75% (based on their tests), and very mild tinnitus in that ear. (The left ear hearing is not 100% but is very serviceable.) We decided on watch and wait, and a followup MRI in 3 months.
The 3-month MRI was done in January 2016 and showed the tumor was now 15 mm x 6.7 mm, compared to 16 mm x 9 mm three months earlier. The neurotologist said that was probably just a measurement difference between the two radiologists who evaluated the two MRI's. He didn't think it actually shrunk. But it was encouraging that it didn't grow. We decided on further watch and wait. He scheduled another MRI for one year later (January 2017.)
I had that MRI in January 2017 and met with the neurotologist in February. He told me the new MRI showed the tumor was now 19 mm x 10 mm. A new hearing test showed a further loss of hearing in the right ear - now at about 90%. After some discussion, we decided on CyberKnife at Parkview Hospital in Fort Wayne, IN, which is where I live. I prefer to avoid surgery if possible, and my age (71 but quite healthy) may not be ideal for surgery. I met with a Radiation Oncologist at the Parkview CyberKnife center in early March and they scheduled the 5-fraction procedure for April.
I had the mask fitting, CT Scan, and MRI two days ago. This latest MRI shows the tumor is now 20 mm x 13 mm, which is quite an increase in just 3 months. I have 5 Decadron tablets. I am to take one tablet 1-hour before each of the 5 treatments. Nothing was mentioned about anti-nausea pills that many here mention that they got after each treatment. My pre-treatment symptoms are 90% hearing loss and very mild tinnitus on the right side. No noticeable balance or facial problems.
To summarize the tumor growth pattern:
October 2015: 16mm x 9 mm
January 2016: 15mm x 6.7 mm
January 2017: 19 mm x 10 mm
April 2017: 20 mm x 13 mm
I will post updates during the treatments, and thereafter will post when something significant occurs, but will also check-in with occasional updates even if nothing significant happens.
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Thanks for posting! Please keep us updated!
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I completed the first of 5 CK treatments about 6 hours ago. I took a 4 mg Decadron pill one hour before the procedure starting time. No nausea pill was provided after the treatment as it was for some others who post here. I felt perfectly normal after the treatment, and still do. I suspect if there are going to be any short-term side-effects from the radiation, such as fatigue or nausea, they won't will show up until after receiving the cumulative dose of radiation from all 5 treatments, or shortly thereafter.
After the treatment ended, I asked the monitoring CyberKnife technician how long the treatment lasted. She said 30 minutes, which was shorter than I was expecting. At my first consultation I had asked the radiation oncologist how long he thought each treatment would take. He said he won't know for sure until they do the final scans and the treatment plan, but probably about 45 minutes. I assume he based that estimate on the then current tumor size, which was 19mm x 10mm. Since that time, the tumor grew a little to 20mm x 13mm, as shown on the MRI done 3 days ago for treatment planning purposes. So I was surprised it took 33% less time than what he originally estimated. Pleasantly surprised for sure, but it makes me wonder if they made a mistake during the planning and it won't be enough radiation to kill the tumor. (That's probably just my typical worst-case scenario thinking when it comes to medical problems.)
Some posters here list their tumor size with 3 dimensions. None of the radiologist's reports for my 4 MRI's list a 3rd dimension, just two. Two dimensions aren't enough to calculate volume, which I understand to be the key to the dosage level required. Maybe the third dimension is small and that results in a lower tumor volume than might be expected for a 20mm x 13mm tumor, and thus less time and less total radiation is needed (my uneducated theory).
Can anyone comment on whether you think the treatment time was surprisingly short, given a two-dimensional tumor size of 20mm x 13 mm?
The second treatment will be in the morning (Friday) with three more next week, Monday through Wednesday.
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Second treatment completed today (Fri. April 14, 2017). 30 minutes again. Still no side effects from the radiation or the 4 mg. of Decadron before each treatment. The 3rd of 5 treatments will be on Monday the 17th.
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Third treatment completed today (Monday, April 17, 2017). Continue to feel fine. Two more go go: tomorrow and Wednesday.
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Good luck with treatment and thanks for the updates.
I wish you success with this treatment,,
Jane
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Thanks, Jane. And also thanks to Patti, who replied last week.
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4th treatment completed today (April 18, 2017). 5th and final is tomorrow morning.
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5th and final treatment completed today. No symptoms from the treatments. The first followup MRI will be in 6 months. I'll post again if anything significant comes up in the meantime.
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I'm glad your treatment is over and I hope you have no ill effects. I'm interested to see what your 6 month scan shows.
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Thanks, mandihester. I will plan on posting the MRI results.
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Happy to hear all went well. Thank you for the updates :)
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This is just a routine update one month after the five Cyberknife treatments.
I have felt no side effects from the radiation treatment.
I had an appointment last week with the Neurotologist that included another hearing test. I am not sure why another test was needed just 3 weeks after the radiation. The tests showed no change in hearing from the test that was done a couple months before Cyberknife (which showed a 90% loss in the AN ear).
The next scheduled event is the first followup MRI at 6 months post-Cyberknife. That will be in October.
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I haven't updated this thread for a while so I'm posting a 5-month post-Cyberknife update in case it is useful to anyone who is new to AN and is doing research. When I was researching earlier this year, I found the updates that others posted regarding their on-going experience to be helpful to my understanding of what I might expect after CK.
For the first four months after CyberKnife I had no symptoms that weren't already present before treatment, which were 90% hearing loss in the AN ear and mild tinnitus in that ear. (Actually I think my hearing loss MAY be worse, but I have no objective measure of that. It isn't useful hearing anyway, whether it's a 90% loss or more than 90%.)
Starting at four months and two days after the last CK treatment, I started getting some episodes of hemi-facial spasm on the AN side. Over a period of a week I had about 7 or 8 episodes. Most were mild and I could just feel a mild tugging on the facial muscle, downwards from my eye and upwards from the corner of my mouth. A couple episodes were stronger and I was able to get to a mirror where I could see that the corner of my mouth was pulled upwards on the AN side, so my face looked asymmetrical. The episodes lasted less than a minute and didn't hurt; they just felt weird. In the 3 weeks since that week, I haven't had any further episodes. So they seem to have subsided, although I know from reading the experience of others, they can come back.
A 6-month MRI is scheduled for mid-Oct, followed by a visit to the radiation oncologist to get the results. I'll report back then, unless something significant happens before then.
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Hi dalmeccl,
Thank you for sharing your Cyberknife journey! I'm glad to hear the semi-facial spasms have stopped, keep us posted. My boyfriend is deciding between radiosurgery and microsurgery, and reading this forum has helped us a lot :)
I was curious, did you get your MRI results back yet?
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My personal preferences, in order of preference are:
1) Observation
2) Radiosurgery
3) Open surgery
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Hi ANSydney,
We totally agree with you. Our concern is his size (25mm x 18mm x 18mm) and his young age (early 30s). A few of the doctors have ruled out radiosurgery. We are talking to more this week to get all the information before making a decision!
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Hi dalmeccl,
Thank you for sharing your Cyberknife journey! I'm glad to hear the semi-facial spasms have stopped, keep us posted. My boyfriend is deciding between radiosurgery and microsurgery, and reading this forum has helped us a lot :)
I was curious, did you get your MRI results back yet?
I had the MRI yesterday and get the results tomorrow, Oct. 19, when I meet with the radiation oncologist. I will post the results sometime tomorrow.
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Hi ANSydney,
We totally agree with you. Our concern is his size (25mm x 18mm x 18mm) and his young age (early 30s). A few of the doctors have ruled out radiosurgery. We are talking to more this week to get all the information before making a decision!
My tumor is bigger. What is more important is symptoms not being too bad and growth over time. I decided a few months after getting diagnosed that if there was not symptom or significant growth over 2 years (5 MRIs) then all is good.
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I had the MRI yesterday and get the results tomorrow, Oct. 19, when I meet with the radiation oncologist. I will post the results sometime tomorrow.
Wishing you the best :)
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My tumor is bigger. What is more important is symptoms not being too bad and growth over time. I decided a few months after getting diagnosed that if there was not symptom or significant growth over 2 years (5 MRIs) then all is good.
Interesting, what was the original size at the time of diagnosis? And what symptoms are you seeing now?
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By the time I was diagnosed, about 3 years after some hearing loss was detected, my tumor had stopped growing. I was diagnosed in August 2016 and have now had 3 MRIs. There may have been slight (less than 1 mm) growth on the first follow up MRI, but zero on the second followup (3rd) MRI.
Hearing has deteriorated since the test 3 years ago, but less than would have likely occurred with active treatment. Other than that I have very little symptoms and they are not getting worse. There is altered taste on the AN side of my tongue and sometimes when a stand up things are somewhat amiss for the first few seconds. I'm really stretching to find symptoms with the last one.
You can read my story and thoughts as time goes on at https://www.anausa.org/smf/index.php?topic=23197.msg979772502#msg979772502
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Thanks ANSydney, great story! It's hopeful to hear stories like yours, wishing you continued `no growth` in your tumor.
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Hi dalmeccl,
Thank you for sharing your Cyberknife journey! I'm glad to hear the semi-facial spasms have stopped, keep us posted. My boyfriend is deciding between radiosurgery and microsurgery, and reading this forum has helped us a lot :)
I was curious, did you get your MRI results back yet?
I met with the radiation oncologist today to go over the results from the 6-month post-CK MRI done two days ago. The tumor size on the MRI that was done in mid-April 2017 for CK planning purposes was 19.8 mm x 12.8 mm. The new MRI shows 20.6 mm x 12.9 mm. That is a .8 mm by .1 mm increase. He said that is not a statistically significant change in size given the difference in technique. (By "difference in technique", he explained that the MRI done for CK planning is more detailed than the followup MRI's, so there could be slight measurement differences that aren't a result of an actual change in size.)
He considers the tumor stable at this point. He said at 6 months post-CK it is a little premature to be totally certain that the CK treatments stopped the growth because the typical growth is only 2 mm per year, and at 6 months, it is hard to accurately detect a change of only 1 mm. However, he was happy with the results, so I am too. At least there was not major growth. The slightly larger size could also be swelling I suppose.
The next step is another MRI in 6 months.
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I met with the radiation oncologist today to go over the results from the 6-month post-CK MRI done two days ago. The tumor size on the MRI that was done in mid-April 2017 for CK planning purposes was 19.8 mm x 12.8 mm. The new MRI shows 20.6 mm x 12.9 mm. That is a .8 mm by .1 mm increase. He said that is not a statistically significant change in size given the difference in technique. (By "difference in technique", he explained that the MRI done for CK planning is more detailed than the followup MRI's, so there could be slight measurement differences that aren't a result of an actual change in size.)
He considers the tumor stable at this point. He said at 6 months post-CK it is a little premature to be totally certain that the CK treatments stopped the growth because the typical growth is only 2 mm per year, and at 6 months, it is hard to accurately detect a change of only 1 mm. However, he was happy with the results, so I am too. At least there was not major growth. The slightly larger size could also be swelling I suppose.
The next step is another MRI in 6 months.
That's great! Yeah, we did read that you need to monitor for at least 2-3 years before you can call it stable and 6 years post treatment to know if everything is settled (symptoms wise).
Keep us posted, even if it's no side effects!!
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Thanks ANSydney, great story! It's hopeful to hear stories like yours, wishing you continued `no growth` in your tumor.
This is the most likely outcome, but "very rarely" it's not https://www.bhtinformatie.nl/pdf/ingrijpen.pdf
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My personal preferences, in order of preference are:
1) Observation
2) Radiosurgery
3) Open surgery
ANSydney, if you had to get radiosurgery would you choose Gamma Knife or Cyberknife? And are you in favor of single dose or fsrt? And if you had any articles to support your reasoning, that would be very helpful!!
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Gamma Knife over Cyberknife for the following reasons:
1) Gamma Knife has been around for longer and therefore has more time to be improved and has more published studies
2) Gamma Knife because it only treats head tumors, while Cyberknife can treat any part of the body.
3) Gamma Knife is more accurate
Also, single dose. The studies show that they are comparable (as is Gamma Knife and Cyberknife), but single dose sounds better to me.
It's hard to find an unbiased comparison between the two since those that have a gamma knife unit will tell you it's best and those that have a Cyberknife unit will tell you it's best. Read each side of the story and decide which sounds better and rings truer.
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Gamma Knife over Cyberknife for the following reasons:
1) Gamma Knife has been around for longer and therefore has more time to be improved and has more published studies
2) Gamma Knife because it only treats head tumors, while Cyberknife can treat any part of the body.
3) Gamma Knife is more accurate
Also, single dose. The studies show that they are comparable (as is Gamma Knife and Cyberknife), but single dose sounds better to me.
It's hard to find an unbiased comparison between the two since those that have a gamma knife unit will tell you it's best and those that have a Cyberknife unit will tell you it's best. Read each side of the story and decide which sounds better and rings truer.
Interesting, and who's the best Gamma Knife surgeon in the US?
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Lunsford
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Thanks! Just contacted him!
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I'm the OP for this thread and am updating it with the results of my 1-year post-CyberKnife MRI:
I met with the radiation oncologist today, 04/19/2018, to get the results of the 1-year MRI that was done 2 days ago. The tumor is smaller than at the 6-month post-CK MRI. It is now 18mm x 11mm x 11mm compared to 20.6mm x 12.9mm at 6 months. (The full history of the measurements is in my signature). This was the first time the third dimension was specified by the radiologist who interpreted the MRI; always before they only stated 2 directions.) The radiation oncologist felt this represented actual shrinkage of the tumor and not just measurement error.
I have had no post-CK problems other than mild hemi-facial spasms for a couple weeks at about 4 months post-CK. I have no useful hearing left in the AN ear (right ear), but that was the case even before CK. Mild tinnitus in the AN ear, but no worse than before CK. No noticeable balance problems.
The doctor scheduled another MRI for one year from now. I'll update this thread then, unless something happens in the meantime, such as new symptoms.
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Thanks for posting your 1 year post Cknife results. Looks like the measurements are going in the right direction. Hoping they go even lower by next year’s MRI. Good to hear that your facial spasms were of short duration and your balance is good as well. Wishing you continued success from here on out.
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Thanks notaclone13.
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Good to hear!!!! Thanks for the update!