Brain mets from gynaecological cancer

Hi

I'm sorry to read that you've recently been diagnosed with a brain met. Although I don't have any personal experience with this to share with you I noticed that your post hadn't had any response.

I did type 'gynaecological' into the search bar in this group but no previous posts mentioning it came up. I looked at your profile to see what type of gynaecological cancer you had, to try that in the search bar, but you haven't completed it yet. You could type in the type of cancer yourself , to see if it brings us any older posts, and also join and post in the relevant gynaecological group to see if any of the members there have been diagnosed with brain mets.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Yes I was diagnosed with ovarian 2018 .

had brain mets treated 2019. With SRS cyber knife ....monitored now have micro growths found on a TRAM scan. Having more SRS 20 th August , had a fit on Saturday from oedema on old treated site , it goes on an on I fear xx

I was just diagnosed yesterday after having a seizure.

i had ovarian cancer diagnosed in sept 2018 followed by chemo surgery chemo and years maintenance treatment. Ca125 marks have been going up but the thought it was my lymph nodes.

it’s very scary just waiting to hear from the oncologist.

wishing you all the best

lorraine

Hi

Yes, I too was told my headaches could not possibly be cancer as it's very rare for endometrial cancer to go to the brain but in my case it did. I had 5 brain lesions/tumours at one stage. Lost my driving licence and had steroids to reduce the swelling - that worked well although I did get a moon face.  

I was offered radiotherapy but this was retracted at the scan set up as it showed they were reducing with the immunotherapy alone. I was treated with pembrolizumab which has worked really well - it's taken 18 months, but at last scan in July I was declared no evidence of disease on the brain (and everywhere else) - no scars either. 

It's a drug gynae cancers are looking at in various trials as it has had some success. We're all different though... 

Hope you're okay coming to terms with this - it was a huge shock for me to be told I had a brain tumour - the loss of independence was horrible. 

lorraine, its a tricky time, i'm wondering about more chemo but my abdomen and ca125 markers remain low....not looking forward to my moon face making a reappearance!!

x

Sorry for the delay in my response and thank you all for your replies.

I am just out of hospital after having my tumour removed and waiting to find out what the next steps are.

Take care everyone 

Georgie