ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: cathyroe on February 16, 2015, 12:18:28 pm
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A bit (well, more than a bit) disappointed that my 6 month post GK MRI showed growth from 14 mm x 8mm in July to 16 mm x 8 mm.
Oh shucks. I was SO hoping for shrinkage and necrosis. Is it just too soon?
How many of you are in the same boat with growth after the 6 month MRI? And if so, did it shrink by the one year MRI?
I just sent the disk to Dr. Lunsford and am hoping he has words of encouragement.
Until then, I will look to you, my forum friends, for uplifting advice and any words of hope and wisdom.
Cathy
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Cathy, this is very common at the 6 month MRI. From what I have read, one should probably expect the swelling. It is all part of the GK process which can take 2-3 yrs. Dr. Lunsford is the best in his field! I am sure he will explain this, far better than I, when he replies to you. :)
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Susan is correct. Swelling is totally normal 6 months after radiosurgery (CK or GK) because that is the normal reaction of a tumor to radiation. Dr Chang at Stanford says it may take up to 3 years to see any shrinkage of an AN. You just need to keep in mind that postop swelling is to be expected (especially at 6 months) and does NOT mean the tumor is growing pathologically. There is a big difference between increase tumor size due to swelling as a result of radiation (normal) and increase in size due to growth (not good).
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Cathy - My recent 6 month MRI showed my AN at 15 x 12 x 14 mm as compared to 13 x 11 x 13 mm in July. (Although an earlier MRI was read at 13 x 12 x 13 mm, so I'm wondering about the precision of MRI results in general.) Dr. Lunsford called this "stable" and noted a "loss of central contrast within the tumor that helps to predict future shrinkage." If you are in the mood to review some of Dr. L's research on post-GK results, I found a paper on the topic at http://www.ajnr.org/content/12/6/1165.full.pdf that talks about some of these issues, although the results are not as promising as others I had heard.
When I was at UPMC, Dr. L did mention the possibility of swelling before necrosis - let's hope that is what is happening in both our cases!
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Please keep in mind that whether necrosis is visible or not, it has no bearing on the long term outcome.
Smaller slow growing tumours often show less or no necrosis, While the bigger faster growing ones do...
Necrosis makes us feel good..... but that's all it does..
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Cathy - My recent 6 month MRI showed my AN at 15 x 12 x 14 mm as compared to 13 x 11 x 13 mm in July. (Although an earlier MRI was read at 13 x 12 x 13 mm, so I'm wondering about the precision of MRI results in general.) Dr. Lunsford called this "stable" and noted a "loss of central contrast within the tumor that helps to predict future shrinkage." If you are in the mood to review some of Dr. L's research on post-GK results, I found a paper on the topic at http://www.ajnr.org/content/12/6/1165.full.pdf that talks about some of these issues, although the results are not as promising as others I had heard.
When I was at UPMC, Dr. L did mention the possibility of swelling before necrosis - let's hope that is what is happening in both our cases!
Hi Sue,
That Paper is really old 1991..... things have moved a long way since then.... They are treating with 12-13Gy instead of 20Gy, Still using CT Scans for dose planning....
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Yes, I agree; but that paper did have some references to the "loss of central contrast" that I was not familiar with.
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Cathy.. My tumour swelled at 6 months and has never shown necrosis in the middle... It's very common especially with smaller tumours
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I think people just expect too much too soon out of GK. There is nothing substantial that can be seen at the 6 month MRI, or even at the 1 year MRI. I see you were treated at UPMC. I know they sent me a packet and CD to watch before the treatment explaining the length of time for the GK to work. Typically, 6-9 years to see the full effects of the radiation. Of course the natural reaction of swelling is disappointment but, think of it as that the tumor is now bruised. It can no longer regulate its water inside the cells and it can swell, Just like any other bruise can swell up. As it starts to die (over years) it can even change shapes as it collapses in on itself. I know it's a hard thing to deal with but, time is what kills the tumor with the GK treatment and I'm starting to see a trend that people are expecting unrealistic results at 6 months and that is just not the reality of the treatment. Statistics are on your side that this will be an effective treatment.
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I so agree about the swelling after 6 mo. post GK. I too had some swelling after 6 months. My one year post GK show some shrinkage. My 2 yr. Mri showed no growth and I just had my three year MRI post GK and it showed no growth again. I am very happy with that. I know for me, I made the right decision to have GK.
Good luck :)
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Well my AN friends, now I am EIGHT MONTHS post GK.
Just reporting.....
It really isn't much different than before GK, except for the lack of stress that comes with trying to make a decision. I made it. GK. One shot deal. Of course, it does give me comfort and confidence that my GK was performed by the famous Dr. Lunsford at UPMC. I believe in that place, I believe in him.
Want to hear a funny story?
As you all know, they give you a big old dose of "happy juice" because of the head frame. It makes a person downright dingy.
After the "proceedure" is finished they want you to eat something. Now, you must remember that I am a professional dancer, fitness enthusiast and NEVER eat junk food. My nurse says I have to eat something before leaving and offers me either jello or chocolate ice cream. CHOCOLATE ICE CREAM????? I haven't had it in years and here is by big chance! I order the ice cream, and what do I get? This crappy little plastic cup of I-don't-know-what.... chocolate frozen coffeemate? Chocolate frozen chemicals? I'm so sorely disappointed and I say to my poor nurse (in a drug induced state) "you call this CHOCOLATE ICE CREAM???? BLACHHHH!".
So we wrap it up and it's time to leave, the wheel chair comes and I say I can walk just fine. Never mind the wheel chair! (Mind you, I'm still high as a kite). I leave the little cubby and see Dr. L down the hall, and I say to my nurse.... "could you please tell Dr. L that I LOVE HIM and thank him for saving my life?" The nurse smiles and says "sure, "I'll tell him".
Now I am 8 months post GK and still have the same old same old. Tinnitus. Hearing loss. But you know what I don't have? Fear. I totally trust the Dr. L and the GK team saved my life and killed the little bugger. It's not dead yet, of course, (swelling) but I do believe I will be fine. I will learn to live with the tinnitus. I will probably end up with SSD but who knows, there are new break throughs every day.
To those of you considering GK, I will tell you that I think it was totally right for me. 61 years old. Work out everyday. Love music and hope like mad I can hear until the end.
Peace of mind is the greatest of gifts. Maybe even better than hearing out of both ears. Maybe.....
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Hello Cathy
I am a newbie here ;D and a newly (decision taken this morning) future GK patient.
As I can see, you had your first post-GK mri. When is the next one?
Hope that it will bring you some good news :)
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Hi Glupson, my next MRI would have been in July, but Dr. L looked at my last one and told me to wait until November or December. He seems quite optimistic about my case disputed the swelling. I must tell you, I feel GREAT compared to before GK. It was a really good choice for me. I don't even think about my AN anymore. I have reduced tinnitus and loss of hearing, but the other symptoms are gone. No more facial twitch , numb feeling ( which I may have been imagining) and the "pressure " feeling is way better. Almost gone. Good luck!
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Hi Glupson - How large is your AN? What are your symptoms?
I had GK at UPMC the same day that Cathy did, and I have the opposite opinion. I regret having done GK. My tumor is/was medium-sized, but I had no symptoms beyond slight hearing concerns and the stress of having an AN. Within 6 months of GK I have almost total hearing loss in the right ear. In retrospect, I wish I had waited a bit.
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Hi SueLL,
I have a trigeminal schwanomma, not an AN; 19 mm
My symptoms are the light tingles on one side of the face, the mouth and the tongue.
I had my GK two weeks ago, and I feel quite good; the symptoms are still there, but not worse than before (it is even better, I would say); some headaches too. But I do fine with a simple ibuprofen pill.
I am sorry to hear that you have a hearing loss. Maybe it is temporary?
If you had waited, there would be a risk of AN growing, which would have induced the hearing loss anyway?
Hope that you will have some encouraging comments from other AN people here :)
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Best of luck with your recovery! I was away from the forum for a few weeks and missed your other posts - sorry! I found the recovery from GK to be minimal, but I am still stunned by having gone from 92% word recognition to 0% word recognition in just six months. Of course I knew hearing loss was probable, but I traveled to UPMC as I felt my chances of hearing preservation were better. No such luck! I guess I would have chosen to enjoy more time with hearing before jumping in GK as long as the tumor was not endangering my brain. It does no good to look back, but it is human nature.
Take care!!
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Hi Suell, If you had waited for the GK procedure, your AN might have grown and you would have possibly lost the hearing in that ear anyway. My AN was 1.7 cm and I had lost most of my hearing prior to have the GK treatment. Compared to the side effects of surgery, GK is nothing. I am so used to not hearing in my left ear and have learned to live quite well with it.
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Agreed - I guess I am just having a bit of a pity party over my new normal. Thank goodness for all the fellow ANers who are around for support!
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Don't write off your hearing yet.
My hearing has gone from good to useless twice, after Cyberknife and it came back.
If you have some hearing it may return.. Hearing went within 24 hours, some came back after 10 days, and then improved slowly for 6 months. until the next bout of hearing loss.
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PaulW - Thank you for giving me hope! Luckily I have a caring audiologist who is working hard to try and help me. I have a hearing aid now, and while I have no word recognition in the AN ear, just hearing the sounds keeps my brain happy and I don't have that sense of fullness. My first audiologist inferred that I need to just "deal with the permanent hearing loss" and move on. The shock of losing useful hearing so rapidly about 5 months after GK and the demeanor of the first audiologist really hit me hard. Thank you for the words of encouragement - they help!
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Hi Suell, It is quite all right to have a pity party now and then. I try to focus on all the positive things but, once in a while, a negative thought appears.
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I know that so many people have been through so much more than I have, but I seem to be seeing more and more "wait and watch". I think it is helpful for all the newly-diagnosed AN members to think this whole thing through. It seems that all of the treatments have success stories and challenges. In this society of quick fixes, I guess I just question whether I opted for treatment too soon. I have guided friends and family through medical decisions all my life, but I don't think I sought enough help in my own situation. I tell people not to look back, but I am guilty of doing so.
Thanks to all the AN cheerleaders! I felt I could lean on you in my sad moments! :)
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I know that so many people have been through so much more than I have, but I seem to be seeing more and more "wait and watch". I think it is helpful for all the newly-diagnosed AN members to think this whole thing through. It seems that all of the treatments have success stories and challenges. In this society of quick fixes, I guess I just question whether I opted for treatment too soon. I have guided friends and family through medical decisions all my life, but I don't think I sought enough help in my own situation. I tell people not to look back, but I am guilty of doing so.
Thanks to all the AN cheerleaders! I felt I could lean on you in my sad moments! :)
Yes, you might have been better off waiting. I am waiting, and I may find out some day I would have been better off acting sooner. I am as sure about waiting now and you were about getting treatment. Were you wrong, am I wrong? There is no way to know. All you can do is make the best educated guess you can at the time you make it.
One of the problems with our society these days is all of the second guessing. It's why I am not a cop anymore. In the old days, people understood that decisions are made with the knowledge available at that time. These days, everybody comes along later and cheap-shots every decision. It's why we can't get anything done anymore. Do you think we could have put a man on the Moon 46 years ago with the current mind-set? Everyone would be too worried about the second-guessing that would result if something didn't come out perfect.
You did the best you could with what you had, and, it might just have been the correct decisions anyway.
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Unfortunately hearing loss from an Acoustic Neuroma can happen at any time and the longer you have it the more likely that will be.
Recent studies are indicating that proactive Gamma Knife may have an advantage in hearing preservation over Watch and Wait
http://www.ncbi.nlm.nih.gov/pubmed/25077326