Not sure whether this is the right place to post this. I had treatment for multifocal grade 2 stage 1, micromet in sentinel node. I was treated with bilateral mx, FEC and rads, now been on Tamoxifen for about 8 months.
About a month or so ago, I was having problems with my left eye in the fact that it ached, felt like it was being pushed foward, trouble with vision, floaters etc. I was told to pop down to the local eye casualty and after a very nervous quiet pause when the doctor was looking into my eye, he said that it was inflamed. He was not sure of the cause and gave me anti-biotic drops and to come back in 3 weeks (which is around now).
Over the last week or so it appears to be getting worse, now with headaches on the left side above the eye, particularly when I wake up. I also have been getting various other symptoms, but after waking up this morning feeling awful phoned to just speak to my BC nurse and was advised to go to my local A&E.
Whilst there, saw a lovely doctor who noticed that my left side had a noteable poor co-ordination in the tests. He has requested an urgent MRI for me, but he told me that he thought it may be Paraneoplastic something or other. He explained that it was to do with the original cancer cells, hormones etc and he thinks it may be affecting the Cerebellum.
The letter he has given me for my gp states suspected ‘Paraneoplastic Cerebellar syndrome’. Does anyone have any experience of this at all? Hubby is on a hols with mates in Las Vegas at the moment and don’t really want to tell him anything about it until he comes back as I don’t want him to worry!
Paula, don’t know anything about this but to let you know I’m thinking of you. When will you have your MRI? Why do these things always happen on a weekend.
I won’t tell you not to worry as that is impossible, but try not to google.
Big hug
Catrina xxx
Hiya lovely, I know a bloody bank holiday weekend…typical hey?! I’ve been told to go to Marsden on Tuesday to have it done, but I don’t think it will be that easy somehow?!
I don’t know anything about your syndrome but the helpline is open tomorrow morning 9 - 2 so give them a ring. If anyone’s going to know something, they will.
Hi Paula - you must be quite worried about this - I’m so sorry. I know nothing but hope that you get some answers soon. The waiting and uncertainty are horrible.
Thinking of you
Love maggyx
Thankyou. Saw gp this morning (the same that referred me with a lump before being diagnosed). She has contacted my oncologist for an urgent MRI and testing. So just have to wait for that appt hopefully it will be in the next few days.
Hi Paula,
I’ve just read that you’ve been called in already.
I’m sure you’re glad you don’t have to wait too long but as you say staying in overnight is horrid as it’s sure to bring up memories of last year…
What a bummer!
Really hope you have a good outcome!The scan will give clearer information at least!
Not easy days for you.
Thinking of you and hoping…
Thinking of you and praying that you dont have Paraneoplastic syndrome. I dont personally have experience of this but met a lady on my chemo ward who had it with ovarian cancer.
hi
my wife has suffered with this for 4 1/2 years now, following breast cancer. hope you don’t have it good luck . if there is anything you want to discuss let me know . it is so rare in the U.K no consultants on it really . there is a prof at birmingham uni / QE hospital looking at the condition though.