I need your prayers and good thoughts
Aug 1, 2019 20:59:46 GMT
via mobile
mollycoddle, luvnlifelady, and 5 more like this
Post by craftykitten on Aug 1, 2019 20:59:46 GMT
I've had some terrible, awful health related news.
We're still in the waiting phase. Please keep me in your thoughts?
UPDATE 16 August
So - after my 3 cancers I went through some genetic testing, and in June they discovered that I have something called Li Fraumeni Syndrome, a genetic mutation that makes me more susceptible to all types of cancer. Nothing can be done but they recommended annual whole body and head MRIs, which I then had.
Waited ages for the results. Feeling fine. No symptoms of anything so I convinced myself I was ok.
Then the results came in - something was showing near my stomach, and something in my brain.
More tests, CT scans, another MRI...the thing near my stomach is scar tissue from my previous surgery. BUT I have a 4mm brain met.
My only experience of people with brain metastases is that they die quickly and horribly. So I am very scared at the moment.
On Tuesday I will be having stereotactic radiotherapy on the brain tumour. This is one, 40 minute session of intense radiotherapy using multiple beams. (I believe it is also called cyberknife? Clever stuff). The dr seemed confident they can get the whole thing, and even went as far as talking about long-term side effects, which has confused me because I thought I would be dead by Christmas. I am meeting with the oncologist a couple of weeks after that to talk about further treatment, but I dont know yet what that will be. I'm assuming chemo or possibly immunotherapy but will have to wait and see.
I am emotionally all over the place, trying desperately to stay positive and not think too far ahead. My heart is broken but I have to carry on.
We're still in the waiting phase. Please keep me in your thoughts?
UPDATE 16 August
So - after my 3 cancers I went through some genetic testing, and in June they discovered that I have something called Li Fraumeni Syndrome, a genetic mutation that makes me more susceptible to all types of cancer. Nothing can be done but they recommended annual whole body and head MRIs, which I then had.
Waited ages for the results. Feeling fine. No symptoms of anything so I convinced myself I was ok.
Then the results came in - something was showing near my stomach, and something in my brain.
More tests, CT scans, another MRI...the thing near my stomach is scar tissue from my previous surgery. BUT I have a 4mm brain met.
My only experience of people with brain metastases is that they die quickly and horribly. So I am very scared at the moment.
On Tuesday I will be having stereotactic radiotherapy on the brain tumour. This is one, 40 minute session of intense radiotherapy using multiple beams. (I believe it is also called cyberknife? Clever stuff). The dr seemed confident they can get the whole thing, and even went as far as talking about long-term side effects, which has confused me because I thought I would be dead by Christmas. I am meeting with the oncologist a couple of weeks after that to talk about further treatment, but I dont know yet what that will be. I'm assuming chemo or possibly immunotherapy but will have to wait and see.
I am emotionally all over the place, trying desperately to stay positive and not think too far ahead. My heart is broken but I have to carry on.
You have fought more health battles than any five people should have to, let alone one. You are in my thoughts and prayers. (((Hugs))) 
