Hi there all, this is the first time I have ever joined a group, unfortunately circumstances have played a part in me joining...briefly my husband 48 was diagnosed with a grade 2 astryctoma 3 years ago. He had debulking surgery done & our wonderful surgeon removed 70% of the tumor. We were told he had the Idh1 deletion (apparently good & that it was methylayted?)He recovered rather well, continues to work, is fit, healthy and active. Other than seizures which are controlled by medication, he still gets the odd few here and there...he is doing ok. However his last 2 scans showed some 'slight' regrowth...This has really rattled me & put me into a somewhat downward spiral....His doctor has advised to just watch & wait as he had radiation & chemo already after surgery. The doctor stated it is still low garde (2) and growing very slowly, I guess I hung my hat on the fact that nothing would probably occur for years down the track...but three years later it is growing again, although expected...not this soon. I feel so frightened..... can I still expect a reasonably good outcome and that I can still have the hope of my children and I having him around for years to come. Has anyone else had anything similar happen and are still going strong. I would really appreciate any advice. Love & thanks to you all. Libby PLEASE would really love some feedback as I haven't had any replies
Hi Libby and a warm welcome to the online community although I'm sorry you've had to find us.
Although I haven't had the type of cancer your husband has I do understand how frightening it can be when you discover that it might be growing again.
I can't help with your questions but I noticed that you hadn't had any replies. This might be because the people with a similar experience haven't yet read your post.
I typed 'astryctoma' into the search box in the online community but didn't find anyone else posting. However, when I typed 'astrocytoma' in I found several posts in this group and also in the glioblastoma multiforme brain tumour group. I'm not sure if this is one and the same thing though.
You could also post your question in ask a nurse and one of he specialist cancer nurses will aim to reply within 2 working days.
When you feel up to it, it would be really useful if could pop something about your husband's journey 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.
Sending a supportive ((hug))