Hi Tinazzie, great to have you join us. We're all having a wee struggle with the way the comments feed in but we're managing. Any thoughts on the topics we've been discussing or anything you'd like to raise yourself?
Just an FYI - the Look Good Feel Better Program is running, but online only - It's in 2 parts - makeup and wigs/head coverings. I did both online. Would have preferred in person, but it helped!
Hi - glad to be on too. I haven't been able to read all of today's topics yet, but did notice the one on post-treatment vacuum. I'm not in post-treatment yet, but my 6th and final chemo round will be next month, and I wonder what happens then. I don't seem to get much info from my oncologist on the topic. He does not appear to advocate frequent scans. I see many of our sisters post that they are NED - and I wonder how that determination is typically made. Any help or answers on that? Thanks!
@Tinazzie. Normally you do follow up at spaced intervals. Close together to begin with. Not sure if COVID means they might be by phone. As I moved out east I see a gynaecologist and get scans once a year about
Beamblossom started a discussion yesterday on that topic Tinazzie but not sure anyone has commented as yet. NED determination is usually measured by your CA125, at least here in Kingston. Watching it decline indicates the drugs are working and hopefully by the end you have been steadily in the 0 - 35 range which is what they consider NED. As for a post treatment plan (they call it surveillance), at least here in Ontario there really isn't any standard. It's one area you have to advocate to get the followup you feel you need.
and they may use the CT or MRI to confirm no visible disease present. You should also ask for or receive a transitional appointment (moving from treatment to followups) which outlines your future care. And yes, every province and situation for the person is different.
Angel27 it does sound like there isn't any consistency across the country, and probably within provinces on how followup is managed. Sad to say how lacking that is when it's a critical time emotionally for most of us. I was told just to call if I felt I needed to be seen. That''s when personally advocating kicks in. I nicely but firmly told my oncologist that wasn't an acceptable approach and for the first year we negotiated a check up, with blood work and CA125 every 3 months...
Thanks for all of the info re: post treatment follow up - I am scheduled for round 4 out of 6 treatments next week, but I am planning ahead re: follow up. I understand that I will receive a CT of chest, abdomen and pelvis and CA-125 test immediately post treatment, and then follow up every 3 months but I don't know yet what those follow ups entail.
Unfortunately PEI doesn’t have the same resources as Ontario and there was not a qualified oncologist. So I saw gynaecologist ever 3 months to start. About ever 6 months now
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Unfortunately, no freebies were offered with the online classess....
As for a post treatment plan (they call it surveillance), at least here in Ontario there really isn't any standard. It's one area you have to advocate to get the followup you feel you need.
You should also ask for or receive a transitional appointment (moving from treatment to followups) which outlines your future care. And yes, every province and situation for the person is different.