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Pleomorphic xanthoastrocytoma tumor (Pxa): help
Brain Tumor | Last Active: Dec 9, 2023 | Replies (132)Comment receiving replies
We had our appointment with the oncologist and I know I haven't posted in awhile but I'm having a really hard time with this. I find myself breaking down at the least little things. A commercial on tv or a simple sentence makes me cry. If I'm feeling this way how is my daughter feeling??! Anyways....
The oncologist showed us her MRIs and they did not get all the tumor of course and it has increased some in 3 months time. His plan is to send out more pathology and do some extensive test on the genetics of the tumor. This test takes 3 weeks to complete and then she has another MRI and we proceed with chemo and radiation. Of course depending on the pathology report that will decide type of chemo etc...
He never mentioned another surgery. His remarks were "You are so young to be dealing with this!" Not once but several times. YES we know this!
So now we wait until her next appointment and we are trying to be positive but we are so scared!
Just the words Chemo and radiation are so scary.
She tells me I have to stay busy and I can't think too much about this and I know! I feel the same way! For now she is preparing for her 4 year old to go to school in a couple of weeks and spending as much time as she can with her babies.
Her 26th birthday is in a couple weeks. I wish I could take this from her and make it go away!! I hate cancer so much! Prayers appreciated.
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Hello @imp1 Sorry to hear of your newest challenges for your daughter and you. I am Scott and with my wife's care I remember well that the times of waiting were some of the most difficult. In our medical care we have become so accustomed to having immediate responses, decisions, etc. that these times are some of the worst when it does not go that way.
My wife's MRI also showed they did not get all of her tumor, but she also fought the darn thing for over 14 years. Small comfort I am sure. Her oncologist also did not talk about all our options until her full pathology reports were received and he had all the information he could get. Again, the waiting was a very tough time! I'm sad to hear of your daughter's young age. My wife was 49 and it was so hard at that advanced age too.
Also, as a parent or loved one, I agree with you we would do anything to make it go away or wish we could take it away. Especially when the patient is young.
My wife and I had many well meaning folks tell us to manage our emotions in a variety of ways, often 'stay busy and don't think about it'. As I said well meaning but totally impossible! You are dealing with some very tough emotions and you should expect it to be a roller coaster at times. You wouldn't be human if you didn't!
I wish I had a magic wand I'd be sharing it with you for sure!
Peace & Strength