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TOPIC: Help. Panicking about possibility of a new tumor
#3243
mg12 (User)
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Help. Panicking about possibility of a new tumor 6 Years, 6 Months ago  
Hi, I really hope someone can help us. My partner was diagnosed with a Grade 11+ Ogliodendroglioma last August (2011). He underwent almost complete resection over two surgeries and follow up radiotherapy which he finished last July 2012. About 2 weeks after the RT finished he underwent an MRI which showed a new small white lesion. Neurosurgeon said that it could be an effect of the RT or a new tumor but we would have to wait a couple of months to do another MRI to see if there is any change. He didn't really offer any comfort that it might just be a RT injury and noted that it lacks the swelling one would associate with an RT related lesion but really we wont know for sure until the next MRI. We have to wait months now for the next MRI and the longer we wait the more panicked we're both becoming that it'll turn out to be a new tumor only months after the first one was removed. Has anyone else had this experience because the waiting is torture and we would like some inside info one way or the other.
 
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#3244
Natalya (Admin)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 6 Months ago  
Hi,

Welcome to BT Buddies but so sorry you have the need to join us.

You are not alone in feeling scared of what the next scan and future may hold, I just wish I knew of a magic button you could press to take all that anxiety away.

How long do you have to wait for the next MRI? Does your partner have any symptoms that are concerning you at present or is it mainly just what might have shown up on the MRI?

Your BT Buddy

Natalya
 
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#3247
mg12 (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 6 Months ago  
Thanks Natalya,

Just discovered this site and its fantastic. It really does help to know that others are going through the same experiences. Have to keep reminding ourselves that the grim reaper isn't banging on the door just yet. We heard today we have the next scan in two weeks which isn't too bad but its still two weeks of anxiety. He's in perfect health, no signs of anything wrong externally at least. He had a scan before the 7 week RT treatment which was fine, then another one a week after the RT which showed a new 'Lesion'.

Like I said the Neurosurgeon said it could just be an RT injury but followed up with that it could also be a brand new tumor. Thats it, no suggestions either way. Its been a year of hell and we really thought we were at the end of all this and could finally get on with our lives, so even a suggestion of a new tumor has us in a spin. Plus since the pre RT scan was clear we're shocked to hear it was even possible for a new tumor to sprout up whilst undergoing RT, let alone in just 8 weeks.

Anyway we're keeping the fingers and toes crossed that it is just a side effect of the RT.

M
 
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#3251
Curly Sue (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 6 Months ago  
Hi there, sorry we cannot help a lot really but just wanted to send you our best wishes for the next scan. We fully understand how you must be feeling. Andy & Susan xx
 
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#3259
marney (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 5 Months ago  
Just thought I'd say hello. I don't have much to add I'm afraid.It seems we all suffer from 'the wait'.... WAIT for next MRI and 'WAIT' for the results.
When you watch hospital programmes on tv the results come through straight away don't they...not in 2 weeks!
After my sons surgery and rt there was some suspicion the tumour had regrown, but it turned out to be scar tissue.
Kathy xxx
 
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#3265
mg12 (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 5 Months ago  
Thanks all, its comforting to know others know what your going through. He actually had his scan today so nows its the dreaded 'Wait'. Hope to get results in the next day or so.
 
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#3272
marney (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 5 Months ago  
Any news yet?
xxx
 
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#3273
mg12 (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 5 Months ago  
Hi Marney, he did the MRI but we have to wait until next Tuesday before we meet the consultant for the results. We're a bit nervous because he initially told us in passing he'd might call with the results but instead his secretary called to make an appointment. So of course now we're thinking the worst if he wants to see us in person. So just trying not to think about it. Hows your son by the way
 
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#3274
marney (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 5 Months ago  
Its human nature to think the worst, but he may want to discuss meds or how your partner is feeling. It could be lots of things couldn't it? I have learnt to worry when there's something to worry about otherwise you'd go mad!
My son is fine at the moment, has the dreaded ESA medical tomorrow. I keep thinking that surely they won't withdraw benefit, I mean until we know what Jeremy is doing how can he go back to work? Who's going to employ him? He has his next scan middle of October, so until then we keep smiling.
Kathy xxx
 
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#3275
mg12 (User)
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Re:Help. Panicking about possibility of a new tumor 6 Years, 5 Months ago  
Absolutely !. There are many un-sinister reasons he may have preferred to meet in person. Unless you've got millions stashed away, I think most people have the same issue. Bills still need to be paid and food put on the table, which, in this day and age, is not easy when someones out of work, even temporarily. I hope everything goes well with your sons ESA. The last thing he needs is to worry about finances on top of everything else.
Marcus X
 
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#3284
mg12 (User)
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Scan results tomorrow 6 Years, 5 Months ago  
So we get the results of Cormacs MRI scan tomorrow. We're both pretty anxious today, I have a permanent knot in my stomach. We're both trying to put a brave face on it but we're just dreading going in. Its that darn mystery 'Spot' from the last scan in July. Fingers crossed its just as a result of the RT, don't feel like I'm properly prepared to hear any other scenario.
 
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#3285
marney (User)
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Re:Scan results tomorrow 6 Years, 5 Months ago  
Hope you get good news, be thinking of you both.
xxx
 
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#3286
mg12 (User)
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Re:Scan results tomorrow 6 Years, 5 Months ago  
Thanks Marney.
We're in at 8.30am so at least we won't have to wait all day, I anticipate a sleepless night ahead though.

M
 
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#3287
Natalya (Admin)
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Re:Scan results tomorrow 6 Years, 5 Months ago  
Will be thinking of you both and hoping for the best possible news.

If I can help in anyway after your appointment I'm always around via email natalya@btbuddies.org.uk or you can call me on 01688 302168.

Your BT Buddy

Natalya x
 
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#3289
mg12 (User)
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Scan Results 6 Years, 5 Months ago  
Hi, so we went in for the results of the scan.

Neurologist said it was inconclusive and that it was still to early since finishing RT to be sure if its new tumor progression or an effect of the RT. He did say though that the instinctive feeling of the team and the radio-oncologist was that it was most likely an RT injury.

He also said that even in a worst case scenario it was a recurrent tumor then its been caught early and they'll be on it with surgery straight away. So we felt much more relaxed and reassured when we left. He has to do another scan in Nov and again in Jan which should clarify the situation. Putting it behind us now for the time being and make an effort to enjoy life.

Thanks for all the support, it really does help take the edge off all the anxiety.

M XXXX
 
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#3290
marney (User)
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Re:Scan Results 6 Years, 5 Months ago  
Phew sounds good to me. Now you have to get on and enjoy life again.
Keep in touch though won't you?
xxxx
 
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#3291
mg12 (User)
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Re:Scan Results 6 Years, 5 Months ago  
Thanks Marney, most definitely will keep in touch. Hope everything works out with your sons ESA and everything else.

M XX
 
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