ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Vivian B. on May 05, 2010, 06:18:45 pm
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Hello to my AN friends,
I got my results today. My tumour grew altogether from 1.9 cm to 2.1 cm. Although not a great growth, it is growing. The Neurosurgeon expects another 1mm growth in 6 months. I have decided to have the gammanknife treatment and the date is on June 9/2010. I was provided with a video to view of the procedure and a complete explanation of how the day should turn out. There is no mesh mask which I am glad as I am claustrophobic but of course there is the head frame. Anyway I am not sure how I feel, little glad, little anxious. I don't know if I can concentrate at work until that date. How do I put this out of my mind and go on until that day when it is such a big deal! Anyway I welcome any thoughts you have on how to deal day to day during the waiting time.
Thanks.
Vivian
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Vivian -
sorry to hear your AN is growing, but glad you've made a treatment decision; never an easy task.
I think the mesh mask is used for CyberKnife, which is why you don't get one for Gamma Knife.
I added your procedure to the AN Calendar so we can all remember to wish you well before your big day.
Best,
Jan
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Wow, Vivian, that is big news. I guess this is what you are waiting for when you watch and wait.
I think it will go great. By some accounts, it amounts to a long morning, and a few days sitting around taking aspirin. Not that big a deal, in fact.
I think you will find a sense of relief starts to grow in the coming weeks, as you realize that you have resolved the situation and found a good plan for action. Your work is done; you can just go on autopilot until it is over with.
So congratulations! Have a good month of May, and best wishes for June 9th.
Steve
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Vivian ---
I am happy for you that you were able to make a decision --- how hard was that!!!! I am going thru the same thing right now. I was diagnosed 2 months ago with a 2.7cm AN. I have been to many Dr for information and my head is swimming. The hardest part is to try to make that right decision. I have hearing loss in my Left ear since I was a child. My AN is in my Right ear --- makes things difficult.
I DON'T WANT TO LOSE MY HEARING!!! I was told my tumor is too big for CK, but I could do GK. My other option is Fractionated Stereotactic Radiation -- 5 days a week for about 5 weeks. They say that would be easier on the healthy tissue around the tumor.
Please keep sharing you info and the best luck to you. No one knows what we are going thru until you go thru this yourself.
Take care --- Patt from Minnesota
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Vivian ~
I guess the wait is over. Of course I'm sorry to learn about your tumor's growth but I'm pleased to see that you made a treatment decision. I believe the GK treatment is relatively easy. Putting it out of your mind is a self-discipline exercise and I don't have any sagacious advice except to keep busy and don't allow fears about the 'unknown' to rattle you too much. I'm sure you'll do well and many people will be thinking of and praying for you between now and the completion of your GK treatment on June 9th. Try to remain, like me, realistically optimistic.
Jim
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Thank you all for your good wishes. Always good to hear from everybody. It makes things much easier.
Vivian
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Don't sweat the headframe...no big deal. They made me groggy (drugs...yeah!), and then I was awake and presto...it was there. I walked around with it on and my wife took pics. There were other paitents with head frames on too, I felt like I was part of a wierd fraternity LOL... but..seriously, don't sweat it.
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Vivian,
This is a big moment for you, moving from W&W to scheduling surgery. Although it is hard to get the news that your tumor is growing, you have made your decision and have your date. As Jan said that can be a really tough decision. Perhaps you need to let yourself soak it in for a bit, then hopefully you will be able to concentrate at work? Take some time for yourself, go to lunch with a good friend, do what you love most, and spend time to absorb. You should feel good, this is your gut telling you to do what you think is the best for you in your current circumstance.
Go with the flow enjoy the next month and try not to dwell, you are in good hands : )
Liz
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Hi Vivian - I have an appointment for Gamma Knife on 5-18. You asked how people cope during the waiting period...
Once I made the decision and appointment, I really backed off daily reading about the AN and went back to my normal routine. For the last several weeks, I've been very busy painting sets for a community theater play which opens tomorrow night - being with people I like, staying busy and productive and doing what I love helped me to take my mind off of this problem and feel optimistic about life in general. Though I was quite dizzy while doing the work (lots of climbing ladders, bending, stooping, etc.), I did notice that by staying busy, my mood improved and I stopped worrying.
I am leaving for NYC on 5-11 to visit my daughter for a few days before we both head to Pittsburgh to address this AN issue.
I hope you can find some peace during this difficult time.
Nancy
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Hello Vivian,
I am happy for you also that you have come to the decision to have treatment, which is what everyone says is the hardest part of the journey. Now it is time to allow yourself freedom. Freedom from worry and freedom from all of the stresses of life, and to bask in the comfort of knowing your journey is now heading in a different direction. You have done your research, you've asked all the right questions, now get busy with life and enjoy it knowing that your move forward is the right one for you. May the time go swiftly by, and this An journey become a distant memory.
Blessings from
Jackie in oregon
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Hi Vivian,
sorry about the growth news, but at least now the uncertainty is over. The bugger probably doesn't intend to stop growing, so it is better to deal with it now rather than later.
Like others have said, it is not as terrible as it seems. Be prepared for a long day for sure, but the procedure itself is not so bad. One more tip. As you know I had GK at the same centre. Have you asked who will be the doctor treating you? Don't assume that is will be the same doctors that did the consultations, because they have scheduled rotations, and it depends who is on duty that day. If you really want your doctor to handle your case ask specifically what dates he is in charge. All the doctors are good and competent, but I want to warn you so that you won't get a nasty surprise of meeting a doctor that you have never seen before on your treatment day.
Other than that, I would say try to keep your mind occupied with other things, so that you won't constantly think about it. Remember that with GK you don't see any results right away, so by the time you are done with GK, you really won't feel much difference anyway.
Marianna
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Thank you everybody for all your support. I just got a call from Toronto Western saying that my treatment has been moved up to June 30/2010 as they had to take an emergency situation. I figure everything happens for a reason. I will post my new date.
Vivian
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Vivian,
Hang in there. I have had dates moved for non AN procedures and it can be frustrating, but as Marianna said all the doctors are very good and competent. You will have been a comfort for all of on this forum Vivian and we are all here for you.
This Sunday is Mother's Day, now is my big order to you and all the Mother's out there me included. ENJOY YOUR DAY!!!
Anne Marie
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Congrats Vivian. I've been corresponding with our friend from BC and he had his MRI today, but doesn't know the results. I'm glad you decided your treatment, and just slightly jealous that I can't have radiation. How silly is that? I'm waiting patiently for head cracking day.
In the meantime Anne Marie is right, Mother's Day is coming up, and the weather is supposed to be really nice next week. I'm going to plant some annuals this year, though I've traditionally stuck to perennials, and the grass is incredibly long with the rain.
The ANAC Toronto chapter is having their 6th anniversary May 25th, right after the long holiday weekend. Then the summer will be on us in no time. There will tons of stuff to occupy your (and my) mind.
It will be done before you know it and you'll wonder where the time went. I'm very pleased for you. I liked Dr. Rutka and the folks there an awful lot when I met them. I really felt comfortable there. You'll be in great hands. Perhaps you and I and Marianna and Anne Marie can do lattes' some afternoon too...
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Sounds like a plan Nikki......
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Hi Guys,
Thank you both for your support. It would be great to meet you. Just let me know when and where. I signed up for the support meeting on May 25/2010.
Vivian
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I'm supposed to be on vacation that day so I can mark it in my agenda now. My boss wants me to go do an interview in Strathroy and in Mississauga during that week.
Anne Marie, did you say you can't come to the support meeting or you can? We could hook up prior to or right after the meeting and have a nice tea or latte...it's Toronto, there must be some place (starbucks, second cup) close by.
Marianna? perhaps Keeping up (Ann) can come too? I know Ann has the 4 babies so she might relish a break away for a couple of hours.
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I would really like to meet all you guys. But being outside the GTA, I would have to travel to Toronto for the meeting, and especially on the 25th I have an important meeting at work. For sure I will try to get in contact with at least some of you if I happen to come to Toronto in the following months. Especially after a phone conversation with the doctor on Friday, who upon reviewing once again the latest MRI very carefully told me that "there may have been some very slight growth", I really feel that I need some support :(
Marianna
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I'd love to come, but I have my follow up appointment with Dr Rutka the next day. I don't know maybe I can look into staying over night in Toronto. Let me put my thinking cap on and see what I can do. I would love so much to get together with all of you and of course attend the meeting.
Anne Marie
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Hi Marianna,
I can't believe it. Hopefully it's margin or error or something. I will be praying for you. When is your next MRI?
Just as an FYI , I read that Dr. Guha at Toronto Western is conducting a clinical trial of 30 patients. They are being treated with a medicinel used to treat Leukemia. He is expecting 15% shrinkage after one year.
I don't know much else about it.
Vivian
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Yes, both GK doctor and radiologist were quick to point out that it is totally within the margin of error and could depend on the number of slices. I have noticed that during the last 2 MRIs, the MRI technician has been taking images of many more slices, I guess by now they know me too well, lol. So it could have something to do with the more detailed images. Vivian, I hope I haven't scared you, for sure GK has arrested the growth (it was a wacky 4 mm over 6 months before GK and almost negligible in two years post GK) and the tumor has shown necrosis. It is very common for ANs to grow slightly before stabilizing after radiation. If I end up in trouble, it will be because my AN was very large to begin with, so there is really no room for additional growth.
On another note, the news on the trial that Dr. Guha is conducting is very interesting. Please keep us posted if you learn anything else.
Marianna
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Congratulations Vivian
Apologies I am a bit late to the party, and sorry you have a delay. Two weeks means so little when you don't have something planned, but can seem like a lifetime when you do.
The ANAC meeting - always have intended to go since diagnosis. Maybe this one would be a good one to start with. Can't say I think much about this tumor anymore - just sitting, and waiting, and well, losing my hearing!!! I have kind of run out of questions. I will ponder, and assess the soccer schedule and who might be able to bring my daughter home from soccer practice. (I won't get out much during soccer season.) It would be interesting to meet some of you (who is going??? Nikki? Vivian? anyone else?)
Ann
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I will be there. I have it in my calendar. I 've told Mr. R. I'm going..but
if it's better to do it another day, perhaps we could meet along the go line or the subway line, say Bloor West Village..(I love it there) or Oakville...
you kids tell me.
for those going to the meeting I'd be happy to meet up prior to...say 5:30 or so. There is a Starbucks about 1.5k south west of there on Dupont.
Nikki
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Vivian: wonderful decision!! Be peaceful your heart. I believe you are doing the right thing ! Let go of your anxiety. The date is set & you can relax...
Always good thoughts, Nancy
ps: in hindsight: wish I had made your decision !
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Hi Everybody,
Good to hear from all of you and thanks for your good wishes.
Marianna, I am so glad for you. Not only was I worried about your next step but I was starting to think about my own. Thanks for sharing your thoughts and results.
Vivian