Radiation Therapy - Long Term Total Necrosis?

[doogey]

I've been reading several posts from people who have had some form of radiation therapy (CK / GK, etc).  Some people have experienced positive results showing certain stages of necrosis after many months after the initial treatment.  For those people who have had radiation therapy, has anyone actually shown "total necrosis" (the tumor is totally dead)?  And, if so, how long did this take after the initial therapy?  Did total necrosis require only the single treatment, or multiple treatments?

I'm still trying to decide if radiation therapy is the choice I will make.

Thanks,

Jeff

[ppearl214]

Hi Jeff and great question.  I know Mark is over 6 yrs out post-CK. Hoping he sees this post and chimes in... I do believe he would be a good one to answer this.

Phyl

[Evan]

Jeff:

There are several studies that you may want to look at.  One of the only long term studies for radiation was through the U. of Pitts, under Dr. Lunsford.  He did a 10 year study between 1987 and 97  comparing treatments, results, recurrences, etc.  I believe if you check on the U. of Pitt Gamma Knife center, you will find some reference to that.  Other than individual experiences, which are going to be important, this study is still, according to my reading, the only long term study on radiation and the effects.

Good luck.

Evan

[tony]

Our sheffield Gamma Knife centre has pub a ten year, and shorty a fifteen yr
study for NF2s - due to the slow growth/swelling issue
most are reluctant to call tumour dead until 19 -24mths post treatment
NFs are renown for being harder to stop
- Noren recorded a regrowth at 9 yrs !!!
Mind you at 9 yrs, is it a regrowth, or a new one close to the first ?
Hard to call.. methinks
Best regards
Tony

[Mark]

Because Phyl wished it , I am here! Sounds like the Genie in the lamp doesn't it 

Actually, I will be 6 years out as of my next MRI and Audiogram in November, so I guess I'm about 5.5 years now. When I last talked with Dr. Chang at my 4 yr check up I believe he had indicated that they usually look at the 3 year mark as definitive in tumor control and had not had one fail after that point in time.

My sense is that while necrosis is a positive process when seen on a MRI it is not a 100% indicator of long term success. The typical progression in terms of  MRI's is that the AN enhances as all white pre-treatment, then usually at 6 months to a year it displays various degrees of dark spotting which indicates cell necrosis, finally it shows up as all white which represents the scarring over of the remaining tumor ( I call this the carcass stage  ) It is always important to realize that MRI's are only snapshots in time and depending on each individual they may or may not see the spotting stage, which doesn't mean it didn't happen.

I think Bruce raises a good point about whether the 2-3% of quoted regrowth for radiosurgery is new growth or a failed treatment. While the accuracy of different radiosurgical systems is bandied about on this forum frequently, I think the aspect of each machines ability to treat irregular shaped tumors ( or non-isocentric) is a key issue that is overlooked too often.  a system that doesn't have flexibility of targeting the beams could have good accuracy but result in hitting some parts of the AN very hard and others not hard enough, which is known as hot and cold spots. So it is possible to have early MRI's show noticeable necrosis where a hot spot was hit and then potentially experience a regrowth if one section of the AN was not hit with a lethal dose. That was ultimately one of the reasons I chose CK because of the ability of the robotic arm to position itself at any angle to insure a uniform dose to the AN.

Bruce is also correct that the AN will never disappear after radiosurgery and while it may or may not shrink, it should not grow any more which is the goal. I can't remember exactly what my last measurement was but it was around 1.5 cm or about 25% smaller than the size at time of treatment. Most likely, it will stay at this size going forward and not show any further reduction.

Hope that helps, back to the lamp 

Mark

[pearchica]

Hi Doogey! Sorry to welcome you to the club as it were.... I got CK treatment in Feb 07. I was told that it would take anywhere from 3-5 years for the tumor to die off by my radiologist Dr. Soltys... And yeah, the the tumor would shrink somewhat but always be there.  What the CK treatment does is prevent any further growth.  Mark, Brucifer and Phyl are the "radio experts" here at club AN- and me, I'm just a bartender!  take care, Annie

[marystro]

I am just visualizing down the road, say 5 to 7 years, with all of the radiation clubers hanging out in a Napa Valley winery to toast for good fortune and good health....  what a scene.... 

Should make it a point and note it on our calendar... Phyl?!

Mary

[macintosh]

I'm intrigued by the term "totally dead." It reminds me of the Monty Python movie where the medieval family wants the death wagon to take away an old one who they say is "mostly dead."

I think the criteria for dead in radiated ANs is that they stop growing, and stop causing any new symptoms. Maybe that could be called "effectively dead." As long as it stays that way until I'm, um, totally dead, that's good enough for me.

mac

[Betsy]

Hi all,

I had a consultation with Dr Eisenberg at the University of Maryland Medical Center last week.  I chose him because he does both GK and regular surgery.  He didn't try to push one treatment over the other, which I really appreciated.  He even showed me photographs of tumors, which was sickly fascinating.  Overall, it was a very helpful meeting.  But there is one thing that's been bothering me.  In speaking of radiosurgery, he said that the tumor cells are "stunned" by the radiation, not killed.  I've been thinking about that for the last week.  I want my AN to be annihilated, not stunned.  Maybe I'm reading too much into it, but to me "stunned" is temporary. After all, why would so many MRI's show necrosis if the tumor cells were merely in a daze?

Thoughts?  Comments?

Betsy

[Mark]

Betsy,

I don't understand Dr. Eisenberg's use of the word "stun", but I would suggest that it is a very poor analogy for what happens in radiosurgery. Simply put, the impact of a high dose of radiation on the tumor destroys the majority of abnormal cells outright and damages the DNA of the the others so that they can't replicate.

Mark

[macintosh]

Seriously this time--
Here’s my understanding of the terms “stunned� and “totally dead� etc. As Mark says, radiation kills most of the AN cells and damages the rest to the point that they do not replicate. So why does it matter if they are “totally dead� or “stunned�?

In the mid-nineties, radiation doses for ANs were lowered. The one, five, and ten year tumor control rates have remained steady, and serious side effects have gone from rare to extremely rare. But it could be theoretically possible that it will be discovered, twenty or thirty years from now, that some of the “stunned� cells are able to restart themselves after a very long dormant period.

I do not think that this is a serious argument against the effectiveness of radiosurgery for ANs. This risk compares an entirely hypothetical possibility in the case of radiosurgery against the statistics that show a much higher rate of serious side effects from open resection surgery. Surgeons who advocate surgery sometimes warn patients who are opting for radiosurgery that they will have to have MRIs for the rest of their lives. But the control rates for surgery are certainly no better than the rates for radiosurgery, so really, everyone who has had treatment for an AN is at a similar risk for recurrence, and has the same rationale for regular monitoring.

I’m 54 years old, and I had radiosurgery in January. I’ll have my first followup MRI next January. If the extremely remote possibility comes true that that when I’m 75 or 80 years old I need to have another shot of radiosurgery, I can live with that. It’s an outpatient procedure. Two radiosurgeries are still a lot safer than one brain surgery.

Mac

[marystro]

But I also heard that after you have CK once, they can't give you CK again because the area cannot take too much radiation in total dosage.  Is that what other learned also?  If that's the case, does it mean at 75 - 80 years old or years down the road, we have to have open head surgery to remove that?  It would be tough at such an age...

Mary

[Sue]

My doctor told me that GK can be repeated in a year if it doesn't "take".  Mine "took" and it jolly well better stay dead!!

Sue in Vancouver USA

[Patch]

HI JEFF,

    I JUST FINISHED WITH MY RADIATION THERAPY. I HAD 6 TREATMENTS WHICH WERE 3 A WEEK.  ALL WERE LOSE DOSE AND DR. SAID THAT STUDIES SHOW ITS AN EFFECTIVE TREATMENT.

   I HAVE A FOLLOW UP APPT. IN OCT AND A SCHEDULED MRI IN JAN. THAT IS WHEN WE WILL SEE AND HOPE THE TUMOR IS DEAD .

    I HOPE ALL GOES WELL WITH YOU AND WISH YOU THE BEST OF LUCK. THIS HAS BEEN SCARY FOR ME. ( HAVING A AN )

MARK

[Raydean]

Mark

Wah Hooo,  Another postie!!!!

Congrats on researching, choosing a treatment option and seeing it thru.  As scary as it was, look how far you've come.  You ought to be proud of yourself!!!

Hopefully in the not so distant future we'll be hearing even more good news from you.  We wish all things good and positive. 

Again Congratulations and best wishes

Hugs
Raydean