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indiana
05-04-2007, 01:51 AM
Hi All,
I'm new and I hope to find you all feeling well.
My mum has been diagnosed with a grade 3 oligo last month. In Ireland the MRI showed just one tumour fronto temporal. I found the treatment in Ireland a bit iffy simply because she was having slight weak spell seizures for 2 years and her consultant only sent her for an MRI in Mar 07 and then discovered the tumour.
So since my girlfiends french I brought my mum to France for a second opinion. That was 2 days ago and they did another MRI. They found another tumour on her cerebrellum at top of her nexy back of her head which the Irish MRI didn't find.
Now she is due to start radiotherapy in Ireland on the 16th of May(less than 10 days). She is more comfortable in Ireland cos she lives there and trusts the doctors there. But her doctors there do not know that we got a second opinion in France.
The French neuro oncologist said he would start my mum on Chemo first(but not temodal - the old 3 drug chemo) and that he wouldn't start her on radiotherapy like ireland have suggested.
I need to ring my mums oncologist in ireland tomorrow and explain to her what the french radiologist and neurologist have found(i.e. the second tumour)
My questions;
Should my mum start on radiotherapy or chemotherapy first. Who is right France or Ireland?
The French specialist said that in Ireland/UK they prefer radiotherapy first because it is cheaper and only consider chemo as a last resort.

Will the Irish oncologists get contrary because we got a second opinion?
My mum is afraid to upset them because she wants to be treated there.

Will they be defensive because they never discovered the second tumour?

I haven't told my mum about the second tumour yet because she is only coming to terms with the idea that she has cancer and one grade 3 oligo since last monday!

How do I tell her without breaking her spirit again?

She cannot have surgery because of the position of the second tumour near her spine/cerebrellum.

She told me she wants to live until she is 90. She is 58.
Man I'm finding this really hard to deal with.
She is still looking healthy, no headaches no symptoms and the french doc thinks she might have 1p and 19q chromosomes deleted.

I would really appreciate any feedback as I am finding it difficult to process all this info on my own. I don't live in ireland at the moment so fly over and back which makes everything difficult.
Sorry for the long post.
Colm O'Loughlin

rlee
05-05-2007, 05:56 PM
indiana,
This is a difficult situation. In terms of telling the docs in Ireland, it's all about the approach. Just tell them that your GF knew some docs in France and pushed for the 2nd opinion. Versus if you tell them you didn't trust them, I'm sure they'll be upset. In general most docs understand that people get a 2nd opinion especially if something new was found. I'm not sure which method is best, but just talk with your team of doctors about it. Have you talked with the radiation oncologist as well, the person who may give the radiation? Best wishes and keep us updated.

indiana
05-07-2007, 03:24 PM
Thanks for the reply. I decided to tell the irish oncologist who was giving the radiotherapy. I explained that I pushed my mum to get the second opinion but she didn't want to do it incase she upset the irish docs. she understood and also told me she was happy i was going the extra mile for my mum and that it was good that they found the second tumour. So i am sending the french results to her. Also she suggested because of the 2nd tumour that a combination treatment might now be the best option so this reassures me that the irish docs know what they are doing.
later

Flutter
07-23-2007, 06:18 PM
I had radiation for my first tumor and it worked great and pain wise it was a snap. This time I am doing chemo by temodar and it is working great but pain wise I feel like I have the flu and it is dreary.

indiana
07-24-2007, 01:01 PM
thanks flutter for the response. My mum went through the radio without a hitch also. we are waiting for the MRI to be done next month to see if the radio reduced the tumour.
do you think it is possible to get the all clear with a grade 3 tumour?
she was on 140mg temodal during radio and she felt a bit of nausea but nothing else... now in a few weeks she will do 5 days on 3 weeks off od temodal at 280mg ... hopefully she doesn't feel too sick from that... she has lost her hair from the radio and she finds that difficult to deal with

Flutter
07-24-2007, 02:57 PM
realy, this is all i know i am currently on 160 mg of temodar and really wish to be off of it. sorry i cant offer any advice or thinking.

brainman
07-24-2007, 06:32 PM
Hi Indiana, I am so sorry to hear that your mother is having such a difficult time with her treatment. I had an Oligodendroglioma grade 3... actually, it was a recurrence of a grade 2 in 1992. I took chemotherapy (CCNU) during all of 1993 and into 1994. Different chemo I know and temodar is much better (they say). When it recurred in 2005, I had one cycle of CCNU pre surgery, surgery, and then radiation therapy. Now, over 2 years later, there is no sign of recurrence. I do have the constant danger of seizures although I have not had one since they changed my medication several months ago. I also have some right sided weakness. But otherwise, I am doing fine. I know that the cancer can and probably will return some day. That is just the nature of this beast. However, right now, I am OK. Back in 1994 when I turned 40 years old and my friends jocked about my age, I told them that I did not mind so much being 40, but that I felt like someone owed me a year... I felt very sick for most of 1993. I now see that I had to "pay" one year of my life in order to have 14 more years to live. I hope that in a few months, your mother can look back at this time and also realize that it was worth it.

I will keep you and your mother in my thoughts and my prayers.

indiana
07-27-2007, 12:29 PM
Thanks for the reply. It is always very heartening to hear others stories. You'll have a long life yet I reckon. I'll send as much positive energy your way as you send to my mum. Thanks.