Three years ago today I had my operation - TAH, BSO and omentectomy. Luckily for me, my mucinous adenocarcinoma was caught at stage 1a, so I did not have to have chemo. I'm still NED, though I still get very nervous at check up time!
Just thought that those newly diagnosed might find this encouraging!
Cheers (and back to unpacking - we've just moved!)
Barbara
Good to read yet another positive post. Hoping you keep well in the future. I have just been discharged after 5yrs free Whoopee! X
Wow, can I whoopee with you, that's great!
Thank you! X
That's great news! All the best for a long and healthy future!
Barbara
Thanks Barbara. X
Once again another posiitive post, one of a few lately. Wish you all the best. x x x
This is lovely uplifting news Barbara though I'm not surprised you feel nervous towards check-up time.
A new house too! Wishing you a very happy and healthy future in your new home. xx best wishes Annie
Hi Barbara
Great news and encouraging for lots of us. I am quite new to this site and haven't picked up all acronyms yet. What is NED?
I understand only too well that levels of anxiety go up at check up time. Wishing you at least another 3 years of good health. Maureen
Great news for you and reassuring for "newbies", Barbara!! Good Luck in your new home. Hope you'll be very happy there.
Love, Solange
Great news glad all is good with you,
How often do you go in for check ups and what type of tests do they run?
I was supposed to be checked every 3 months for the first year, every 4 months for the next year, every 6 months for the next 2 years then annually for another couple of years, as far as I recall - I do have a letter giving the schedule, but it's still in a box that's awaiting unpacking. I have to say that the hospital has not managed to stick to anything like that schedule - it's been more like every 4 months for the first year, every 5 or 6 months for the second year, and every 8 months thereafter so far. They make me appointments for the correct interval, then postpone when I'm already getting nervous about the forthcoming check up. My next check up was supposed to be on December 3rd, but they have already postponed it to February 13th, and on past experience they'll postpone it again before we get there. I know that it's because they are pretty certain that I'm okay, and someone else needs the appointment more urgently, but I still find it very upsetting!
At my check up, they just ask about symptoms and feel my tummy - if there are any worrying symptoms they run a CA125 test. My GP and I have decided that when they are playing postpone the appointment, she will request a CA125 test when the appointment should have been to help me worry less. I do find that very helpful!
Barbara
Interesting. Seems that with Mucinois Borderline, check ups vary. I've had 1 exam since my surgery in January. No one gets too excited when it's 1a. That's a good thing, right?!
I'm going for every 6 months. Going to ask for a CT scan next time.
Ah, yours was borderline - that's probably why they are not seeing you as often. Mine was invasive, not borderline. As you say, though, they don't seem to get too excited when it's stage 1a, and that is undoubtedly a good thing!
Hope your check goes well, but don't be disappointed if they don't want to scan you - that's a good sign too!
Barbara
Delighted to see you are doing so well Barbara xxx Trish
Just read this i have the same type but it is stage 1c just having my mop up chemo,extremely worried as have read that this type of cancer is very aggressive with not a good outlook
Hi, Izzy. It seems to be the case that if mucinous ovarian cancer is discovered at an advanced stage it is very difficult to treat, as it doesn't respond well to chemotherapy. The good news is that if it is caught at an early stage it has a very good prognosis as it is usually successfully treated by surgery. You are clearly in the early stage category so your prognosis is likely to be excellent. Don't be afraid to ask your doctor for reassurance on this point!
Best wishes for a long and disease free life,
Barbara
PS I'm still NED after 5 and three quarters years.
Ned 💕🤞😉
NED and special friends
