Husband went for scan yesterday after a 6 week break from radiation and all doctor could see was lots of swelling . She said it was radiation necrosis , what are your experiences with this please anyone ? Please be honest , when ive googled it there is so much conflicting information , some will say it improves with high dose steroids and other sites say its progressive, how can it be both ? Also if chemotherapy is not given due to a very low platelet count of 53 what will happen next ? Will we get told sorry theres nothing more we can do and sent home etc ? I just want to be as prepared as i can be Thankyou everyone
Hi
I'm sorry that I can't help with your questions but I noticed that your post had gone unanswered.
I typed 'radiation necrosis' into the search bar in the group to see if anyone else had mentioned this in the past but only found one other post that was over 2 years old.
You could post your questions in ask a nurse and ask about radiotherapy and the specialist nurses will respond within 2 working days. Alternatively could your husband speak to his CNS as they are usually really good sources of information?
When you have a minute it would be really useful if could pop something about your husband's 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 'Edit 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.
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