MRI results Post GK 3 years

[Richey]

I got my MRI report this morning and the result is that the tumor is stable. It is the same size that it was on the first MRI after GK and that was on 8-23-05. GK was on 2-11-05. Size on 8-23-05 9 X 7mm, size now 9 X 6.5 mm
I am grateful that the tumor is stable and not growing for this long and chose to believe that it will not grow again.
Would have loved to have seen a dark spot in the middle but didn't.
I have learned to live with the things that this little guy has brought to my life and I still feel that radio surgery is a good option for many people.

[jb]

Richey,
No growth in 3 years sounds like a great result to me, and it may even be shrinking slightly.  I got the dark spot on mine, but it was accompanied by lots of swelling.  Not sure which is better.  Congrats on a good report though!



 

[goinbatty]

Rich, I'm so relieved to hear your MRI showed no growth.  That's definitely reason to celebrate! 
JB, I hope the side effects of treatment have calmed down.  Keep me updated.
Take care,
Sandra

[sgerrard]

Stable is good. Slightly smaller is good. Your AN has retired from active duty. 

It seems to come up often, and I am now convinced that necrosis typically shows up during the first year, but not often afterwards. It seems that by the end of the first year, the necrosis area scars over, and shows up as a white blob again. We will see if jb's does that next time. So no dark spot is not surprising.

I can't wait until I'm in the same boat...

Steve

[GM]

Great news!  As long as the tumor has stopped growing...that's a success!

Gary

[elise]

i am very sorry to say this but my AN started growing again and giving me trouble 6 years after GK treatment...now i'm stuck with a very scary surgical option only

[ppearl214]

i am very sorry to say this but my AN started growing again and giving me trouble 6 years after GK treatment...now i'm stuck with a very scary surgical option only

elise,

Im sorry to hear this.... after 6 yrs, I would hope, like you, that things would calm down for you.  As any and all of us know, regardless of what kind of treatment we have (microsurgical or radio-treatments), there are risks involved and yes, on occassion, some failures.  I send huggles to you, in hopes that you will be well soon. Please keep in mind that many have had surgery for their AN, even post radio, and are doing ok. All treatments can and may be scary, but know that we are all here to help you through it......

Please hang tough.
Phyl

[jb]

Elise,
Sorry to hear that your tumor is growing again.  You might want to get a second opinion on your treatment options, though, as some facilities may offer a repeat radiosurgery.  Not sure if it's available in all cases or anything you would consider, but it might be worth looking into if you're opposed to the surgical option.  Dr. Clinton Medbery has experience with both CK and GK and answers questions on the cyberknifesupport.org forum on a regular basis, so it might be worth posting a question over there.  Good luck, I hope things work out for you!

[elise]

I want to thank everyone who respnded for their messages of support. My GK treatment was very effective actually, enabling me the luxury of forgetting all about the AN for 6 years. I got on with my life, the loss of hearing was something I got used to fairly easily. I did experience a bout of imbalance a couple of tims but they didn't last long and I ignored it basically. I literally put the whole thing behind me, skipping a couple of MRI's I was scheduled for, confident  that the slow nature of the growth had been slowed down even further by the radiation. I thought it might catch up with me in the late 60's sometime, if it ever did at all.

Time is a funny thing. Everything about my life with AN relates to my perception of time in one way or another. First, the decision for GK treatment took time into consideration. It seemed fast, easy, an opportunity I wouldn't have if I waited and the AN grew. My perception of the Future was vague, something too far off to worry about. I was 52 at the time. Now, faced with a regrowth at 58, I'm thinking ...what are the risks of waiting for treatment. The doctors I have seen are adamant about 2 things: 1. I can't have a repeat radiation treatment. 2. The surgery will be very tricky. So I'm thinking...what are the risks? Maybe now is the time to "wait and see" since all roads lead to uncertainty, some more painful than others. My present symptoms are certainly bearable, I'm enjoying lots of things about my life.

While I can't really say that I have Regrets, I would advise others to :
1. Take your time. Don't rush into treatment unless your growth is life threatening. I think that watching and waiting, in my case, may have been the wiser choice. I don't know what the window of opportunity re size is for radiation treatment but you may have longer than you think to go there.
2. The decision for radiation treatment limits, in one way or another, your options in the future.

Happy trails.

[sgerrard]

Hi Elise,

First I would like to respond with support for your situation. I'm sure it can't be easy, and all of us hope to avoid that particular scenario. There is a note of wistfulness in your post, which seems very understandable. Hindsight can be so clear, the what-if question is too tempting not to consider it, at least for a little while.

Going by your posts from last spring, I take it that you are still in the small category, 1 to 1.5 cm in size, is that right? I don't think that would be considered urgent, and you may well be able to wait six months to see what happens before doing surgery. Are they talking about a trans-lab? In that size range, with the hearing already lost, it would seem like the natural and safest choice, from what I understand. I know that some surgeons view radiated tumors as stickier, but I am curious why your doctors describe the surgery as "very tricky": my impression is that House and other places still get good results with surgery on radiated tumors, especially with trans-lab.

In my own case, my decision to to radiation now, rather than wait, was based on the hope that I could preserve some hearing in the AN side. So far it is holding steady, though it is not great, and it may yet deteriorate to unusable. I think I would have waited longer if it had not been for that. While you are right that deciding on radiation now sets a course for future options that can't be changed, I think that is true of any decision, including the decision to watch and wait. Others like me chose to wait, only to lose their hearing in the mean time. You can't guarantee a win, you can only take your best shot, and hope for the best.

I wish you all the best, and I hope you find a good resolution to your situation.

Steve

[elise]

Thanks for your input Steve
The tumour is 2 centimeters now, I still think of it as smallish. It's leaning on the brain stem, not causing much trouble besides staggering, loss of balance, exhaustion, weird voice and continued and worsening loss of hearing in my right ear. I can certainly live with all of this. I haven't been using my right ear for the phone for years and I've developed a rubber neck in order to hear what people say on that side of my face. Exhaustion has recently affected my work life, but I've come to appreciate that. The surgeon I spoke to did scare me with numbers. He patiently explained, in the 5 minutes he had to talk to me, how all the risks of an op are increased because of the GK treatment. Since I've never been great at math, maybe this is a good part of what it was that scared me. He also used the Death word twice. I think he's exaggerating, and I fully intend to wait and consider before taking any steps. Thanks for the info about "trans lab" I will have to find out what that is exactly and if it's available where I live.
All the best,
Elise

[pearchica]

Hey Richie: Stanford told me not get too hyper and necrosis at the 6 month MRI level.  That there was too much hype associated with the black spot! (But then those of us who used stanford ALWAYS cite the AN website... hey they need to hear what the patients think)!  And I was told it would take 3-5 years to die off... so I think you are in great shape that it has stablized!  That is really good news.  Take care, Annie

[Richey]

Thanks for the positive words Annie

Elsie, I guess all of us fear regrowth no matter what path we took.

I did inquire about surgery a while back because I wasn't satisfied with no growth, I wanted it to decrease in size after radiation but I settled down and decided that I needed to just wait. During that thought process I did get an online consult from the House Clinic. They will do this free and It was good information that came from a place that has much experience with AN surgery. You might want to seek more opinions on how risky the surgery would be. I've never asked my doctor about a second radiation shot so I don't know how they look at that.

Anyway, I hope you will be able to come to a decision that you feel good about.

I lost all my hearing on the treated side and I have a little balance issues at times but I played golf today in this beautiful day with the temp of 81 . I can tell what the thing did to my balance nerve when I'm bouncing around in a golf cart but I can still do it and I am thankful for each day that I can live a pretty normal life.

Rich

[elise]

Steve,
I now know what translab is and how to spell it, thanks to you. After a cursory look, it seems like the right choice for me. My AN is 2 cm, leaning on the brain stem, but I after jumping to my previous decision re GK treatment I think I'll wait around and do more homework before surgery. You're right about the wistfulness...and the hindsight ...neither of which is very constructive, but may be useful to others when faced with a decision like this. I actually didn't have a lot of choice at the time, I was told there were no surgeons with experience in this field where I live when I was diagnosed. I'm also generally optimistic and chose to believe that the treatment would limit/stop growth for about 10 years. Well... I wasn't far off...6 years of not thinking about it at all ( maybe for a couple of hours during that whole time ). I also tend to believe in the magical powers of Denial. I think it is that which I will take with me for the next stage. My visual image of the growth is a sea cucumber, supremely passive and boring. I think about all the people who lived with this before the advent of the mighty MRI.
Elise

[ppearl214]

Hi elise,

FYi only..... I have been given permission by the ANA to share this with you as it will be in the next (upcoming) ANA newsletter, getting ready to go to final print.  I have not seen the entire article going into the newsletter, but the ANA is aware of your situation (and a few others with GK issues), so they provided permission for me to share this with you.   So, direct from the upcoming ANA newletter:

"After an AN patient has Gamma Knife and it appears to have "failed"repeat imaging shows that it continues to slowly enlarge over time and the tumor is not dead, what are the patient's options?  In a small number of cases at a leading Gamma Knife facility, when patients initially presented with a small tumor and minimal growth has occurred, a second Gamma Knife treatment has been performed.  To date this has met with success.  Of course, microsurgery is another option to consider."

I don't know if this helps, but GK is being done a 2nd time, if necessary.

Phyl