Well had my over the phone oncology appointment yesterday as I've had this covid again 🙃 1st scan since surgery and finishing chemotherapy and after my oncologist talked about starting parps and reading the consent then sorting my avastin around having a port fitted I asked her if she'd had my scan results? She said she'd have a look and guess what???? I'm only clear!!!! All organs/peritoneal/ and no change in aortic lymph!! 😅😅😅can't believe it!! So relieved, I don't understand why it wasn't the 1st thing she'd want to tell me but they can be a strange bunch these oncologists! Anyway it's so lucky I went private for 2nd opinion and paid for my operation when I did or I'd never got to this stage! Hope you all have a lovely Christmas with your families and friends ❤️ and if you are struggling right now I hope you see that there is hope xxx
Good news post!!! 🥳❤️🩹: Well had my over the... - My Ovacome
Good news post!!! 🥳❤️🩹
great news 🙏🏽💕💕💕
Aww that's Amazing news. Now go and celebrate 🎉
That’s fab! Only sorry you couldn’t get there on NHS! x
Brilliant news x.
Fabulous - that’s just perfect news! Have a wonderful Christmas 🎄
Bless you such brilliant news, what a great xmas present. And l agree 2nd opinion if necessary, and your sorted so pleased for you.Sending love & hugs SheilaFxxx
Well done, such wonderful news just before Xmas. I hope you have a really fab Xmas with your family.x
Brilliant news 😁👍xx
wow just wow!! 🥰🥰
Fantastic news so pleased for you xx
what wonderful news
Absolutely brilliant news! Congrats!
how awesome!! Wishing you a great holiday season ahead!
That’s fantastic news. Well done you 👍🏻 x
Excellent News x
Wow, great news. You must be over the moon to hear that xx
Wishing you well with your next treatment. 👏🏻👏🏻🙏🥂💕
love this! Have the best Christmas and treasure the moment! ❤️
Brilliant, have a lovely Christmas! 💖
🥳🥳🥳 so pleased for you xxx
Flipping fabulous news!! Well done you for taking charge and not accepting your first opinion. It takes guts to do that and I’m just so pleased it all paid off for you. Sending you the best festive wishes. 😘🎄
So happy for you 💓
Thats brilliant news 😄x
Well done. Have a special xmas with your family. xxx
Congratulations on your good news!!! I’m so happy for you. Xx
absolutely!
So happy for you! Have a wonderful Christmas! Donna xx
What a wonderful Christmas present !! Now you can really celebrate. Gillian, Mookie Fox.
What fabulous news, now celebrate and enjoy xmas xxx
Hello there this is wonderful news, you must be so relieved and happy! Now time for a fabulous Christmas with your family, sending hugs! Xx 💖
What fantastic news! 🎉🎉🎉🎉
Thank you for sharing your positive story. Hope for us all. 💕
What fantastic news! I am so glad for you !xx
fabulous xxxx 😊
hi Newbury3
That’s such brilliant news and especially at this time of year .
Could I ask please , were you refused the operation on the NHS and is that why you decided to go private ? And if so , why were you refused it ?
I have stage 4 OC and have just had a laporoscopy to see whether it was possible to do the debulking op , but it was felt to be too dangerous to proceed ; I was devastated when I came round .
I’m going to be given Avastin for “ up to a year “ but didn’t know whether to go privately for a 2nd opinion re the op
Thanks for any information you could me
Well I was told initially that I'd have operation then 6 chemo, then I had further investigations ie lymph biopsies, womb biopsies and another ct scan and was told that I needed 3 chemo 1st then op then chemo this all took 11 weeks to sort out before even starting. Anyway I had my first 3 chemo then scan and was told I'd probably have 4th chemo by the time mdt got my scan back then operation , but my oncologist then went on holiday and I was told over the phone that mdt had decided I'd have 6 chemo then operation! I wasn't happy with what I was being told so rang to see my oncologist as soon as she returned to work were I was then told that mdt had said they weren't happy with 1 of my lymph nodes and that also they had a capacity issue so couldn't fit my operation in!! Fuming!! I asked if I could have extra chemo after the operation to mop up and it was a no, anyway I got a second opinion with Prof Fotopoulou and my scan was sent across and guess what??? I was 💯 ready for the operation and according to Prof Fotopoulou needed it urgently! I was in 7dags later, we traveled from South wales to London and Christina worked a miracle! She told me after the operation that it was lucky I'd gone to her as 3 lymph had gone necrotic and fused together to my pelvis and she just managed to get it all out! Only 1 other surgeon in the country could have done that operation so actually it was lucky that I had been let down in Wales as they would have closed me and left the dead lymph and that would have been it for me! I paid private but Christina kept the costs down by releasing me to a hotel that I paid for 5 days and only had to pay 5 days hospital stay, I would 100 % advise you to get a 2nd opinion with her as its £450/500 but she is no messing amazing.. she did try to get me transferred to her on NHS but my oncologist in Wales said it would take time that would cause to much of a gap in treatment. So that's my story and the price of my life best thing I've done. If you want any other advice please or ill give My phone number and we can chat ok xxx
thank you for replying to me , Newbery3
I did ( and do ) trust the surgeon who did my laporoscopy ; he was there when I came to from the anaesthetic and said that he had set the rest of the day aside to do my debulking but because the disease was present near the blood vessels to the small bowel it was too dangerous .
My surgeon’s name is George Theophilou and he’s at St James hospital , Leeds ; he has a very good reputation . Having said that you must wonder why I asked you for more information, but with this terrible illness you clutch at straws don’t you ?
The dilemma I now have is that I am due to start Avastin at my 5th cycle of carboplatin , next week , or the 6th one . It hasn’t been co yet . The problem is that you can’t have surgery until at least a month after Avastin is finished ( I’ve been told I’ll get it for 12 months) so that could be 13/14 months from now . It’s such a mess and Christmas is coming up too .
If I refuse the Avastin when it’s offered I’m not sure they’ll offer it again .
You mentioned only one other surgeon in the country could have done your op , do you know who that is
My surgeon did stick his neck out at the MDT to go ahead with the exploratory laporoscopy, apparently several people had said surgery wasn’t viable based on a recent scan , which followed 3 cycles of chemo ( carboplatin only , I had an allergic reaction to paclitaxel )
I need to have a serious think , I’m not sure how to proceed because I don’t want to be denied the Avastin
Take care xx
I'm not sure who the other surgeon is but they are in the Marsden, I think you knly get offered avastin once and I started mine with 6th chemo and find it very good, I was having a port a cath fitted but had to postpone due to gravy cold but the oncologist said they would hold off tge avastin for that operation maybe that's an option for you too? Are you hrd positive? X
I would have had to have had an appointment with Christine and then her assessment of what could be done and I believe I’m due to start Avastin next week . I really thought I would have had the op 2weeks ago , didn’t expect to be in this position .
The surgeon I had did say , when Ivsaw him last week , that we could consider it again after the Avastin, but it’s a long way
Oh , did you ask if I’m brca positive ?
Apparently , the tumour in the ovary is brca1 positive but they haven’t got the results back yet about the bloodline , so haven’t got the full picture .
I’m stage 4b as the disease is also in the para aortic lymph nodes
Thanks for your advice , I do appreciate it
Yes I'm 4b and it's in my para aortic lymph nodes also, I have read of a lot of women having brilliant results with avastin and gone on to have the operations! I asked if you are HRD positive? I am so am able to start niraparib, maybe that could be another option? X
Oh, my word , that’s so reassuring! I have felt stage 4 to be a death sentence . I have to say I don’t know what HRD is , so will look that up.
Yo’ E given me a bit more hope this evening. Thank you x
I'm glad you got some hope from this, there are a lot of ladies on the site that are stage4 and going strong, who knows what drugs are just around the corner! You can do this! X
I can’t tell you how much more hopeful you have made me feel . I need to link to the main site and see more women’s experiences .
If I may , would it be ok to get your phone number in the future to have a chat ? xx
So glad about you. So your NY present cant be better, enjoy slowly...
I love this news. You go girl.
I’ve just had good news too - will post shortly - as you say it helps to bring hope to those who are struggling right now.
Take good care & have a fabulous Christmas 🎄 xx
Looking forward to hearing your news too! Merry Christmas 🤶 x
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