Regrowth after Gamma Knife

[sarahinPA]

Hi everyone!

I dont come on this site too much anymore, with a hectic life I find myself with little time to read and post. But, I know that you all are here when support is needed and there is always someone needing the support when I do get a chance to log in.

I Am here today because I just returned from an appointment with my doctor. Today, he informed me that my AN is growing back after 2 2/12 years post Gamma Knife (Jan 2009). Here's the thing, he orignially told me and continues to tell me that regrowth affects only 2% of people who have GK. I am one of the unlucky  2%. The other things he continues to tell me is that regrowth is more likely to happen in older people, I am 26 and in good health otherwise. My doctor was slightly baffeled today, and said that he was going to present my case at a conference this afternoon and get back to me this week with some other opinions and thoughts based oin his discussions. Now, its important for everyone to know that my doctor currently sits on the ANA board, so I take his recomendations and findings very seriously.

He gave me two options to ponder. First, re-do GK, in the 8-9 people he has done this with, they have all been successful in stopping the regrowth, or, I could have surgery to remove about 2/3 of the AN and GK the remaining parts to help prevent damage to the nerves during surgery.

Ive been thinking all day, and the support from others in the AN community would be nice. I think I am leaning towards the GK again as of right now, because to be honest, the surgery scares the heck out of me, and i know what to expect from GK. What are your thoughts and suggestions? has this happened to anyone else and if so, id be curious to know how your outcomes have been. Thanks so much, and I look forward to hearing from you all.


Sarah

[ilsemor]

I'm sorry, you're living the worst AN nightmare. 

How much bigger is it this time?
I would suggest second and third opinions here.  Is there any way for you to find out how many surgeries he has done, does he do them often?

[Tumbleweed]

Hi, Sarah:

Sorry to hear you're going through this. We all worry about this happening to us, whether we've had radiation or microsurgery.

First, is your doctor absolutely positive that yours is not a case of swelling (which can happen even three years post-treatment) or "MRI tolerance"? Regarding the latter, an increase of less than 2 mm, especially if it's just along one axis of measurement, might just be due to a different view of the tumor and not an increase in size. If, on the other hand, your tumor has increased 2 mm in size along two or three axes of measurement, or your doctor has seen serial smaller increases over the course of two or three MRIs (establishing a trend), then your tumor probably is increasing in size.

In any case, I would get a second opinion because reading MRIs (even in expert, professional circles) is a tricky, somewhat subjective affair in that the angle at which the measurements are taken are oblique and arbitrary (versus at exact right angles).

If you do need treatment again, (you know what I'm going to say, having been down this road before...), trust your gut as to which treatment you should choose. But do ask some questions before you choose. First and foremost, if it were me, I'd ask (two or more doctors) what they think the percentage chances of facial paralysis, hearing loss and headaches (the most common side effects) are with each treatment option. If it were me (and it's not; it's you and your life), I would choose whatever form of treatment stands the best chance -- in percentage terms -- of giving me the best quality of life post-treatment.

Once again, sorry to hear you're going through this.

Best wishes,
TW

[windy]

Sarah,

I want to share a very similar story to your experience.  I was told in August 2010 by the neurosurgeon that reads my MRI that my tumor had grown post GK by approximately 2 mm's.  My MRI was exactly two years post GK.  I sent my scan to the team that handled my GK.  I was told they saw this in 4% of cases with 2% of resolve!  Needless to say, I had no peace from that news.  However, I lost some of my hearing suddenly in Dec. 09 the year before.  I could not help but think the tumor had swelling at that point.  I am not sure it ever went down in size (just a theory).  I had another MRI in Dec. 2010, four months past the August 2010 scan, based on the doctor's request.  I was told the tumor had not grown at all and may have had some reduction in size in one angle.  The neurosurgeon was satisfied and said I was back to an annual date again.  I had another MRI in April of this year for some problems and still no growth.  I agonized over the growth from Aug. until Dec. and am not sure I should have ever worried.  The neurosurgeon said you can not tell for sure where you are until four years out in his opinion.  I also read there can be swelling for over two years GK. 

I just want you to know I understand how you feel.  Still, there may not ever be any more growth.  I would give it some time, if I were you!  I wish you the very best!     

[sarahinPA]

Thank you everyone!

I had an MRI in December 2010 for increased symtpoms, facial paralysis was occuring, this was not a symptom I had when I was first scanned for the AN. This had begun and was getting more frequent in the months prior to Decemeber. In that scan, my AN had increased by 2mm since the last MRI in June 2010 (about 6 months). I was asked to return in 6 months, which was yesterday and it has grown another 1mm, causing my doctor to think it is growing and not swelling.

Like I mentioned before, my doctor is on the ANA board and has patients from all over the world coming to him for GK. He was one to pioneer the procedure here in Pittsburgh, so, I do trust his opinion and medical advice. He was as baffled as I was, because he has not seen this regrowth in anyone my age, which is why he was going to consult and discuss at a conference yesterday afternoon. He is supposed to get back to me tomorrow and let me know what was thought and said at the conference.

I think, that with the options of 1. surgery, following with GK or 2. GK only for the second time, I feel GK is my best option. If it is unsuccessful again (which in the 9 people he has done a second GK on, it has worked) I could get the surgery if I have regrowth a second time.

I feel that taking the risks associated with surgery, such as the chance of nerve damage and headaches to follow is a little much, when I at least have the option of GK again.

Im only 26, and feel that the chances of having serious side effects to the surgery could and would effect me for the rest of my life, and I have so much life to live, that I dont think I want to go down that road yet if I dont have too..

[nftwoed]

Sarah;

  Not sure if you're a UPMC pt; But, from this pt's perspective, my vote is for another round of GK and if that fails, Mid Fossa surgery if you still have hearing by then. You're young.
  I take exception at the Dr's statement that regrowth occurs in older pts.
  But; It needs to be ascertained whether the size increase isn't part of the MRI normal variation of + or - 2mm.
  Best wishes in all, Sarah!

[mk]

Hi Sarah,

Having gone through this situation recently I understand exactly how you feel.
you have already received some great advice in this thread. As Windy has mentioned, false alarms do occur. However persistent growth (i.e. measurements consistently going upwards) is a source of concern. Since you are already 2.5 years post-GK you must have accumulated quite a few measurements from MRIs. Do they consistently go up? Or is there some fluctuation? As TW mentioned, there are a few things to consider about measurements. I am sure that your doctors will consider these at their conference and get back to you with their opinion.

You didn't mention what it the current size. If I recall your AN was larger than 2 cm? In that case you must also consider/ask about proximity to brainstem, ventricles, already existing symptoms and what would be the consequence of further swelling, if it happens post second GK treatment. Honestly I am quite baffled by both the statement that regrowth is mostly likely to happen to older people (had never heard about this before, actually quite the opposite) and about the possibility to redo GK. I was told in no uncertain terms that in my case second GK was out of the question (even for a remnant after surgery), by all teams that I consulted. I know that Pittsburgh is a pioneer in radiosurgery and obviously they have been implementing this, but it is not common practice elsewhere, so I don't know how much data exists (9 patients doesn't sound like much).
The other issue that would have me worried is that you are already showing facial nerve involvement. You should ask your doctors what are the chances of further facial nerve injury by another GK treatment.
Lastly, consult, consult, consult. I would suggest speaking to a reputable neurosurgeon too for a second opinion. Don't trust any neurosurgeon who says that horrible side effects are guaranteed when doing surgery on a previously radiated tumor. I know from my experience that this is not necessarily the case.

Good luck
Marianna

[windy]

After reading your most recent post, I think there is definite cause for some action.  I did not know facial paralysis was occurring.  I, too, was treated at Pittsburgh, so maybe growth is more commonly seen than realized.

Marianna has given some excellent advice.  She is an excellent source for a similar scenario.  We had GK the same year, just months from each other.  Her tumor was showing growth at the same time of mine. However, as her tumor was larger, she had to proceed with surgery as it was definitely the best scenario for her health.  Also, like Marianna, I was given the recommendation by my neurosurgeon that they do not recommend a second round of GK, based on the risk of cancer.  To me, the risk of cancer is definitely not to be ignored.

I think I would get more than one opinion from neurosurgeons that come highly recommended in the treatment of AN's.  You can never be too cautious!  Good luck to you Sarah!   

[sarahinPA]

Thank you again everyone!

Let me clarify please, Post GK there was no increase in size until Dec 2010 when I was having an increase in symptoms that I had not had in the past. At this time I went to get an MRI and was told it was 2mm bigger than my previouse scan in June 2010. My Dr. asked that i come back in 6 months and re-scan. At this time (on Monday) my scan came back 1 mm bigger than the scan in December, meaning the tumor has grown 3mm in about 12 months.

The doctor did consult with his peers at a conference and spoke with the new surgeon Dr. Gardner from UPMC in Pittsburgh. They feel that with my age, I will do well in surgery and that I should recover very well because I am otherwise healthy. Surgery would remove about 80% (give or take) of the tumor leaving the remaining to avoid up close nerve damage. After surgery they would examine the matter taken out and determine if another round of GK was necessary or not at that time. My doctor told me that after 23 years of doing GK on 11,000 patients, not one has developed cancer or a risk of cancer at the radiation site. To me, those are pretty good odds.

If I do the GK again, the risk of the tumor growing more or swelling could cause more symptoms and even permanant damage to the nerves that are now only receving pressure, another reason they want to get it out instead of trying GK again.

Now, my consult is set up on the 28th of course if I dont feel comfortable with him I will go elsewhere, but for now, its one step at a time.


Sarah