Shall apologise before i carry on - my emotions are all over the place and i feel pretty desperate. Well an update on my gangliolioma and ca125. I managed to get through to Neurosurgeons secretary today who said that the tumour was in the pelvis and not the spinal area so now referred me back to my orginal doctor. Rang his secretary who said he wouldnt beable to do anything till next week as he was busy, so took myself off to A & E and ranted and said i wasnt leaving till they did something so now have appointment with Consultant Friday morning. The shock of it all is that it must now be recurrent OCA and not a benign tumour - this has been going on since July with drs, oncologists etc having meetings and looking at the scan results - how can everyone be so wrong? I just dont feel like i can cope anymore
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Angry and Desperate
- By Sally-i
- Posted October 14, 2009 at 9:58 am · 4 replies
- In Recurrence
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- By GEPI
- Posted October 14, 2009 at 10:39 am
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Hi,
Of course you can cope. You have been doing so for 17 years. At least now you have a diagnosis and after such a long remission a lot of options. There are many ladies on this site with similar remissions and battling recurrennce. Hopefully they will send you some info.
By the way, they do not necessarily start treatment immediately after (at the Royal Marsden they told me that starting early does not lead to better results, but cannot leave it too long either). So you have time to discuss with your doctor options and sure you can succeed again
GEPI
- By MinnieM
- Posted October 14, 2009 at 10:42 am
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Sally-i,
You are understandably concerned, but don't get ahead of yourself. There is no way anyone can know if it is recurrent cancer until a biopsy is done. If it is OCA, it is certainly slow growing since you were in remission for 17 years; so, once again, you've caught it early.
I don't blame you for being frustrated since they've fiddled around since July. Feel free to get angry and rant as much as you like. Take pride in the fact that you're staying on top of things; so, you should get a good result regardless of what the outcome of the biopsy is.
I'm still optimistic since your CA-125 did a drop on its own. That doesn't sound like recurrent ovarian cancer to me.
Keep us updated on your progress.
Minnie
- By Sally-i
- Posted October 14, 2009 at 12:41 pm
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You are lovely ladies on here. Thank you for your support. I spoke to Ovacome today minnie and they said to speak to my GP and tell him how i feel. They also said that, as my CA125 went down it doesnt necessarily mean its returned and if it had then it wasnt 'doing anything' at the moment.
So popping along to Drs tonight with hubby then calling at a friends.
- By FavoriteAunt
- Posted October 15, 2009 at 10:58 am
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Hi Sally-i,
Slow down, don't make yourself crazy, and take it a step at a time. I don't blame you at all, but if you try to stay calm you'll be able to handle it all much better. We all keep thinking..when am I going to get a break?...but in the meantime we have to be strong, and definitely take it a step at a time. It's for YOUR benefit and not anyone else's.
You sound better already and you WILL be able to cope because you are a survivor! Hope you get good news.
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