FSR Failure-Now What?

[elmirlo]

I had FSR from Dr. Lederman in April, 2003.  I've experienced difficult side effects from the radiation including loss of hearing, facial spasms, constant dizziness,  and generally feeling mentally slow but, at least for the first 18 months, the tumor was stable.  Now, however, he thinks my two year MRI shows the tumor to be growing.  Can anyone help me with future treatment options?  Is surgery much more difficult after FSR and at what tumor size is it time for the second treatment?
Thanks,
Brent

[jamie]

Sorry to hear about the possible treatment failure. You said your doctor "thinks" it might be growing? How much larger did he say it was? What kind of FSR did you have, and is the doctor reading the MRI the same doctor that treated you? As for future treatment options you can probably either have surgery, or a second radiosurgery, depending on the size. There is not a whole lot of real data on whether surgery is more difficult after radiosurgery because it's so rarely needed, and many neurosurgeons have differing opinions. Some say it's more difficult, some say it's no different, and some even say it's easier. I suspect is has everything to do with factors specific to each individual patient. Radiosurgery can be repeated, I'm not sure I would go with standard FSR again, maybe CyberKnife or Gamma Knife. But because of your body's reaction to radiation (it's strange that you would feel mentally slow from radiosurgery), and the fact that you seem to have had almost every negative side effect you can, you may want to go the surgical route. Good luck.   

Just curious, what facility did you have your FSR at? I had 3 stage CyberKnife treatment at Barrow Neurological Institute.

[David Wrubel]

The House Clinic in Los Angelels is the premier surgical facility in the US, IMO, and it has handled a substantial number of regrowths after radiation treament via surgery. They have, or are about to, publish a paper on a series of such surgeries. Get in touch with Dr. Rick Friedman there:   rfriedman@hei.org


Good luck and keep us posted.

[antoinette]

Hi, I never post here, I am not sure I know how.
In regard of surgeries post FSR or GK, many surgeons have not found more difficulties because of it, It does happen though but it is not, from what I have heard, truly a big deal.
However, the regrowth often follow the long period of swelling, and the patients feel somewhat cheated by the failure of the treatment which was chosen to avoid surgery.
In the past 12 years of belonging to AN lsupport lists, all the following surgeries were successfull in relieving alll the symptoms due to the radiation failures, and would have likely been succesfull if surgery had been the initial choice.
I wonder if some of those who went through both can report their findings. I know a few, although they usualy do not linger among patients needing the support of a list. They prefer to forget.
In my modest opinion, it ends up the same but with some wasted time.

[Ned]

I haven't posted in a long time but I had FSR 2 years ago and subsequent MRI have showed my AN larger.  Original diagnosis MRI shpwed  a 1cm , 18 months post FSR thje size was 1.5 cm.  I was told that it is not unusual for the tumor to swell up to 2years post treatment.  I don't know if that is true or not.  I wouldn't jump to retreatment  unless you have a large tumor and/or your symptoms are worsening.  The problems are the same as they ever were, you go to the surgeons it going to be have surgey to correct the problem, the radiologist are going to say reradiate.

[antoinette]

It could still be a swelling-after-radiation problem. And if it is not growing much it is perhaps stable anyway. Perhaps it will stay at that size. And it is not a failure.
I suggest you should wait for another MRI after a substancial time in between, as it is always possible to remove a growing AN after radiation, and the stickiness of the removal is not for most ANs, just a few.
But I am sure you know that already.
antoinette

[Ned]

Antoimette, so nice to hear from you.  I just completed a weekend of fanatastic duck hunting, had a little trouble walking in the mud but compensated, had a wonderfull time.  I am scheduled for another MRI next week, will see what is going on.  Peace and love during the holidays.