My CyberKnife/AN Journey Begins

[ANSydney]

My personal preferences, in order of preference are:
1) Observation
2) Radiosurgery
3) Open surgery

[orange37]

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!

[dalemccl]

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.

[ANSydney]

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.

[orange37]

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

[orange37]

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?

[ANSydney]

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

[orange37]

Thanks ANSydney, great story! It's hopeful to hear stories like yours, wishing you continued `no growth` in your tumor.

[dalemccl]

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.

[orange37]

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!!

[ANSydney]

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

[orange37]

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!!

[ANSydney]

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.

[orange37]

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?

[ANSydney]

Lunsford