Ali b
09-28-2004, 08:38 PM
I was dx in 2000 with 3cm grade 3,one node,did adria then 4 CMF,rads to breast.Never ending surgery to recons as partial went wrong.
I was 90% er pos,I took tamox for 3 mths but it made me totally bonkers and they took me off,never offered me anything else.
3 months later I had terrible pain both sides of pelvis,docs put me on Livial a form of HRT,the pain improved.
Last Oct after doing my mammoth swim from Holy Isle to arran in Scotland I was dx with one 3cm bone met in pelvis,but my pain was mostly on other side.It seemed to flare badly when I was taken off HRT.
I was told my "aggressive" cancer was not behaving aggressively,I was put on Femara and took Cipralex an antideppressant with this and avoided the gloom experienced on tamox.
But the pain on other side continued tho lessened from acute on Femara.
I fought to get Aredia,but after one dose came off as I got acute anterior uvietis of my eye[rare adverse event]
New onc[who is hateful little man]did CT with gastrografin and contrast,showed 3.5 cm mass on other side,just below left ovary[just where I get pain,bone met on other side ok]he did MRI,nothing.Repeated after 3 months,still on CT but not MRI.
I asked for PET scan[onc annoyed]PET scan in Aug showed nothing in pelvis but lesion on lung,1cm.Onc told me not to have scans if I couldn't hack results.
A few weeks ago I went to see my rad onc[who is nice unlike med onc]I mentioned as afterthought I had constant glimmering light in right eye.
He ordered brain scan.
In meantime I went to optician who referred me to Opthamology,they said maybe vitreous at back of eye puliing on retina.
I went to brain scan alone sure I was wasting time.
My God they told me I had many scattered brain mets.
How can this be?
They are retesting my HER2 as it was done in v small lab[I had to pay for original test to be done]
I am starting WBR 7th Oct,then chemo it seems.
Asked about Gamma Knife but they said too much brain damage would occur in my case.
What are side effects of WBR?
They said the could not get rid of tumours just shrink,why?My bone met never came back.
Did they underestimate my cancer?
My GP is letting me keep my driving licence,will I lose it for def later?
Last weekend I did my swim again,all my family and friends came.
Can anyone give me realistic hope?
love Ali xxxxxxx
I was 90% er pos,I took tamox for 3 mths but it made me totally bonkers and they took me off,never offered me anything else.
3 months later I had terrible pain both sides of pelvis,docs put me on Livial a form of HRT,the pain improved.
Last Oct after doing my mammoth swim from Holy Isle to arran in Scotland I was dx with one 3cm bone met in pelvis,but my pain was mostly on other side.It seemed to flare badly when I was taken off HRT.
I was told my "aggressive" cancer was not behaving aggressively,I was put on Femara and took Cipralex an antideppressant with this and avoided the gloom experienced on tamox.
But the pain on other side continued tho lessened from acute on Femara.
I fought to get Aredia,but after one dose came off as I got acute anterior uvietis of my eye[rare adverse event]
New onc[who is hateful little man]did CT with gastrografin and contrast,showed 3.5 cm mass on other side,just below left ovary[just where I get pain,bone met on other side ok]he did MRI,nothing.Repeated after 3 months,still on CT but not MRI.
I asked for PET scan[onc annoyed]PET scan in Aug showed nothing in pelvis but lesion on lung,1cm.Onc told me not to have scans if I couldn't hack results.
A few weeks ago I went to see my rad onc[who is nice unlike med onc]I mentioned as afterthought I had constant glimmering light in right eye.
He ordered brain scan.
In meantime I went to optician who referred me to Opthamology,they said maybe vitreous at back of eye puliing on retina.
I went to brain scan alone sure I was wasting time.
My God they told me I had many scattered brain mets.
How can this be?
They are retesting my HER2 as it was done in v small lab[I had to pay for original test to be done]
I am starting WBR 7th Oct,then chemo it seems.
Asked about Gamma Knife but they said too much brain damage would occur in my case.
What are side effects of WBR?
They said the could not get rid of tumours just shrink,why?My bone met never came back.
Did they underestimate my cancer?
My GP is letting me keep my driving licence,will I lose it for def later?
Last weekend I did my swim again,all my family and friends came.
Can anyone give me realistic hope?
love Ali xxxxxxx