AN Growth after CK - Suggestions??

[leapyrtwins]

Deb -

had surgery, so I'm not sure of the "rules" of CK, but from what I was told if there is regrowth, most docs choose to go with surgery.  However, I have also heard that there are docs that will do radiation a second time.  Your best bet is probably to ask your doctor.

If you have to have surgery, don't stress about it.  It's not as scary as it sounds.  Like all of us, who have had it, you will get through it.  I'm approximately 8 months post op and my recovery seems like a distance memory.  It wasn't a piece of cake, but it wasn't as bad as I feared it would be.

Hang in there, and good luck,

Jan

[jb]

CK and GK have both been repeated on AN, at least according to this thread: http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=6126
Sounds like CK/GK could also be considered following failed FSR depending on how much radiation the brainstem has received from previous treatments.  Personally I'd be very cautious about distinguishing between true tumor growth and residual swelling, especially in the first year or two after treatment.

[sgerrard]

CK and GK have both been repeated on AN, at least according to this thread: http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=6126

Thanks for that link, jb. I noticed that Phyl and Raydean were in that thread, badgering Spunberg and Medbery for details. 

I like Medbery's final answer: "I would expect it to be pretty safe." That sounds to me like "not as safe as the first time, but still pretty reasonable if the situation warrants it."

Steve

[Kate B]

CK and GK have both been repeated on AN, at least according to this thread: http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=6126

Thanks for that link, jb. I noticed that Phyl and Raydean were in that thread, badgering Spunberg and Medbery for details. 

I like Medbery's final answer: "I would expect it to be pretty safe." That sounds to me like "not as safe as the first time, but still pretty reasonable if the situation warrants it."

Steve

I read through the thread as well.  It is very elusive. Reading inbetween the lines,  there were two lines of thought discussed.
1.  Radiation treatment for an AN doesn't prevent further treatment of other areas.
2. The answers relative to multiple radiation treatments for the same AN site were skirted with answers like "There is no absolute lifetime total although a given area is limited by the exposure to that site. It does not depend upon which machine is used, except that stereotactic units such as CK and GK tend to deliver a high dose to the target volume and relatively smaller amounts to normal surrounding tissue. The amount a specific region can tolerate depends upon the characteristics of that organ; for example, the kidney can tolerate much less radiation than the brain." and "There is a maximum dose to the area of the AN but not to the body as a whole."

When I did my research and asked both Dr. Kondziolka (GK-UPMC) and Dr. Williams (FSR at John Hopkins) they told me an AN could receive radiation treatment once.  Recently Doctor L spoke to a group in Paris and indicated that Radiation therapy fails in 3% of the cases and that there is no predictability to that. If it fails once, and it is not receptive to radiation, it would seem that more of the same would be ineffective.

I would be skeptical about undergoing radiation treatment twice without reading further peer reviewed research relative to a duplication of treatment relative to radiation. How often has a double treatment been administered and what were the  short and long term outcomes? 

Kindest Regards,
Kate

[ppearl214]

Hi all,

Please be reminded that in your research, AN's CAN be retreated with Cyberknife radiosurgery.  Although any retreatment of AN's is chancy  (regardless if microsurgical or radiation/radiosurgery), the option is there for retreat via CK....  if this shoud (gawd forbid) be the case that your AN needs to be retreated, many have opted to have it removed microsurgical BUT CK can be redone.

Thanks.
Phyl

[ppearl214]

Hi Kate,

FYI... Cyberknife CAN be redone...... and the reason that many of us choose it.....

Thanks.
Phyl

Hi,

When there is a regrowth, no seconds on radiation therapy is allowed.
Basically, what you need to find out is whether it is a regrowth. Did your doctors who administered the treatment indicate it was a regrowth or was it your local hospital (sometimes the two are different)?

I would send my MRI's and my report to House Ear Institute in LA. They specialize in AN's and will give you their consult for free.  Honestly, they are the gold standard in the Acoustic Neuroma field.

All the best,
Kate

[jb]

Just for clarification on repeat radiosurgery, I found the following passage in the "Radiosurgery Practice Guideline for Vestibular Schwannoma," issued by the International Radiosurgery Association in 2006.  Among others, Drs. Lundsford, Kondziolka, and Noren were on the committee that issued the report.  The full text is at http://www.irsa.org/AN%20Guideline.pdf.

Repeat Radiosurgery
Since the tumor control rate after radiosurgery is 95–98%,
other management options after radiosurgery are rarely
needed. Repeat radiosurgery or microsurgery can be
considered for patients with documented tumor growth
after radiosurgery. Repeat Gamma Knife® radiosurgery
can be delivered safely without an increased risk of
complications as compared to the initial treatment.

This particular passage is attributed to Dr. Noren and specifically references GK (his specialty), but I can't see why it wouldn't extend to CK as well.

I'm not trying to advocate one form of (re)treatment over another, but I think it's important that if someone is facing this difficult situation that they be aware that they still have options and retreatment with radiosurgery can't be ruled out a priori.

Hope this helps,
JB

[sgerrard]

Hey jb, another good link, I haven't seen that one before, it is good to see a 2006 review from those well known radiation doctors. I thought it was a good and up to date summary of both radiation and surgery, in fact.

It seems clear to me that a second radiation treatment has to be evaluated by an experienced oncologist on a case by case basis, and the best generalization you can probably make is "sometimes." But it is good to know that it is at least a possibility, and worth investigating if the need ever arises.

Steve

[Me and my Schwanno]

Please talk to your radiation oncologist ASAP.  It turns out my "growth" was swelling.  My six month MRI showed a hollow tumor.  The MRI report, and the letter I received from another physician, did not note this important fact.

No surgery!  Whooopie!

[sgerrard]

Please talk to your radiation oncologist ASAP.  It turns out my "growth" was swelling.  My six month MRI showed a hollow tumor.  The MRI report, and the letter I received from another physician, did not note this important fact.

No surgery!  Whooopie!

Great news! I am quoting your early post just to emphasize it a little:

    "grown from .8 x .8 x 1.2cm  to  1.2 x 1 x 1.6cm"

That turns out to be swelling after all. Thats an increase of 4 mm in two directions, which is a pretty good sized change. The bit about the "hollow tumor" also sounds good, and of course, no surgery required has to be the best news.

Hoping for more of the same next time...

Steve

[elise]

JB thanks for the link...I think I', going to print all this yummy info and bring it to my doc when I go see him. I 'm going to face him this time better informed, with better questions and less vulnerable to his doomsday remarks. Thanks to everyone here.
E

[ppearl214]

Hi JB and thanks.  Many are very familiar with Dr. Noren in Providence and he does fab GK work.  He is also well known for pushing GK outside of its typical boundries by doing fractionated GK, re-GK..... I think of him as cutting-edge GK research.  I know one on this site (ellenvig) that had marvelous results with Dr. Noren and GK and she's doing fab (saw her at our last local brunch and she looked great).  I have to commend him for the work he is doing.

FYI... JoeF and I have also been privey'd that the upcoming ANA newsletter will note an article about re-GK, noted from another highly regarded GK facility, noting success rates.  What impresses me about it.... we know failure rates in GK/CK patients is very low... so its not typical to have to re-radio (regardless of GK or CK) but if the need (gawd forbid) is there, it is certainly a viable option, pending the individual situation, should the patient decide to go that route.  Please look for article in upcoming ANA newsletter that is at final print now (should be mailed shortly to all ANA members).

Phyl

[Crystal]

Deb,

I had regrowth after Cyberknife at stanford  a couple of years later and had conventional surgery with great success. I am very active and functional now. I jog. I started mountain biking and cross country sking this year. I have not got back on a horse yet but I think I will be up to that this summer! I will never have the super stamina back I had before, I think, but I am more active than alot of people my age.

Here is my story.  Hope it helps. Feel free to e-mail me personally if I can help. After my surgery experiance at House, there is nothing I would do differently. When the CK failed, I knew in my heart that it was time to get it over and done with. I am glad I tried CK first. You don't want to second guess your choices.

http://anausa.org/forum/index.php?topic=2737.msg28690#msg28690


God Bless.

[sgerrard]

Crystal,

So you were #5. Thanks for posting that link here, and the whole story last year. It is a good read, and I could not help thinking (or hoping) that I would have made the same decisions along the way that you did. Quite an experience!

When I was at Stanford, Dr. Chang mentioned the failures, and I got the feeling that he knew them each by name, and how they each ended up. I think he would dearly like to know what makes the difference between the hundreds that don't regrow and the 5 or 6 that do (I'm not sure of the exact number now). 99% is just not quite good enough for him.

Your description of the experience at House is very good, it captures the drama of that first week, but also the process that led you there, and your good recovery and outcome. It is great to hear that the story ends so well. And I hope you get back on that horse!

Steve