Hi everyone. My fiancé was diagnosed with Ewing’s Sarcoma in November 2018 in his pelvis, spine and lungs. He’s had 14 rounds of chemotherapy, and almost finished 42 sessions of radiotherapy. On the last scan, it showed no mets in his lungs, spine was stable and the pelvic tumour had shrunk significantly. The doctors have said he will just be scanned every 3 months now to keep an eye on him.
Has anyone else experienced this? Where the treatment plan has finished but the cancer is still present, and the doctors have no further plan?
It’s been a year of hell for both of us, and we want more than anything to get back to normal but we can’t help but feel like we’re just waiting for it to start growing again at any moment.
I've not had this type of cancer but noticed that your post hadn't had any replies. Unfortunately, or fortunately depending on your point of view, it looks like this group is very quiet so you might not get any responses to your question.
Could I suggest, therefore, that you post your question about only receiving scans and no treatment in the ask a nurse section of the site and one of the cancer nurse specialists will respond within 2 working days.
Alternatively your fiancé could speak to his CNS and ask her to explain why he's not receiving treatment only scans.
Wishing you both all the best
Hi there. I would love to chat to your boyfriend or you if you were willing. I have just had a Ewing’s diagnosis for my 6 year old and it’s terrifying and speaking to someone who has been through it may help. I appreciate it maybe a ask as you want to move on but it’s so scary and so rare I’m not finding many people I can ask for experiences etc to help me help my son. Thank you x
I had ewings 20 years ago. I can answer simple questions.
Hi Cattyniccy and welcome to the online community
I'm very sorry to hear that your son has been diagnosed with Ewing sarcoma and it's understandable that you want to find out everything you can about this type of cancer.
Could I suggest that you join this group because you can then start your own thread, introduce yourself and ask questions. It also means that you will get notifications when people post to the group or reply to you. To do this go to the top of the page and click on 'join this group'.
I have found this information for you on Ewing sarcoma in children which you might find helpful if you haven't seen it already.
When you have a minute it would be really useful if could pop something about your son's journey so far into your profile as it 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.
Wow 20 years ago. This is the kind of thing I want to read! Was it in multiple places? X
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