5 years NED

[Twink333]

Hi I'm sorry for posting this when so many are struggling, but when I was diagnosed I was searching for good news to try and balance out the negative thoughts.I was diagnosed OC stage 1a in July 2018. Had the full TAH and BSO and removal of an extra spleen. The tumour was 20cm and my ca125 was just over 1000 at diagnosis. I had an amazing surgeon and I remember him coming to see me in the ward and he said he was looking at 5 years NED for me.

Since surgery I've had regular ca125 tests and it's always hovered between 10 and 16. Today it was 12, so 5 years NED. They've agreed to keep testing for another 5 years.

Wishing you all only the best on this journey x

[Lyndy]

So glad you shared this Twink333, really good news!

Just goes to show there’s always hope xx

[Shan67]

That is such amazing news - I am so pleased for you and it is really great to hear good news stories too - I hope you are going out to celebrate! 🎉🎉could I ask whether your OC was high grade serous and was it also in the fallopian tube? Also whether you have taken any particular medication or vitamins since your diagnosis? With love Shan xx

[Twink333 in reply to Shan67]

Hi shanI remember them saying it was middle grade I think. There was definitely a 2 after the 1a.

It was contained in one ovary and hadn't spread further. But because of the size of the tumour, the surgeon did say that 10 years ago he wouldn't have been able to remove it in tact. But that appt was a bit of a blur, I assumed since ,that he meant new techniques were available now.

I've not religiously taken anything, but when I remember , I take high strength turmeric and a multi vit. The only real change I've made is giving up meat, but that was due to losing taste/smell with covid and just finding it not nice anymore.

They did find a gallstone and gall bladder polyp on the only scan I've had since 2018. Due to 'history' they're ultra sounding me every 6 mths to check if either grow.

[RClover]

Hi Twin333, your post is so encouraging, I am very happy for you

I have just been diagnosed with advanced OC, start chemo next week surgery later date followed with more chemo.

After reading your post, it makes me feel more positive for the future thank you

[Beaver54]

Don’t be sorry, that is fantastic news. I love reading positive outcomes. There is hope for all of us!

Here’s to the next 5 years 🥂 xx

[Newbery3]

Congratulations 👏 and long may you continue to be NED xxx

[SopSinger]

Great news! Congratulations! I'm 17 years NED, so hope you get to 17 years too!

[Mysticmeg123 in reply to SopSinger]

Now this is what I call great news!!! Well done you!!!

[Goodgirl98 in reply to SopSinger]

That's so awesome and cheers to decades more of the same 🙌

[bananayo]

Congratulations 🎉 it’s always lovely to hear good news 💕x

[PaumicB123]

Thanks gives me hope

[0462County]

Brilliant news xx.

[Mysticmeg123]

Thank you for sharing your news Twink. It is always encouraging to hear such positive stories which in turn give us all hope. Wishing you continued good health x

[Jholly4]

Don't apologise for being proud to get good news 5 years NED, you should absolutely shout it out and celebrate. We go through so much turmoil and uncertainty, I am only a few months into this crazy journey so it is encouraging to hear stories like yours.

Jholly

[ZenaJ]

Absolutely fantastic news. Long may it keep that way. xx

[Bluesparrow]

I hope you remain NED for ever. All the best.

[Southernsas]

Hi Twink333! I was diagnosed with OC in May 2019. Mine was stage 1c. It was only found because I had opted to have my ovaries removed being that I have the BRCA1 gene mutation. It was only then that they found the cancer in pathology. My CA 125 was only 8. It has been four years for me and everything has always come back clear. My CA 125 numbers usually hover in the single digits, but the last one back in May was up to 10. In January I had a really bad kidney infection that went into sepsis, and my oncologist told me that alone is enough to bump my number up a little. I always get nervous every time I have to go get bloodwork again. I actually am going this coming Monday. I am hoping that the number is back down in the single digits because it will make me feel much better. So glad to hear that you are still NED 5 years later! I am hoping for that same thing!

[delia2]

Congratulations! Wonderful news.

[Pianoplayer731021]

Thanks for sharing your wonderful news. It gives hope when we are having difficult days with our treatments. May you have many more good years being NED. Blessings, Donna 🙏🥰

[Goodgirl98]

This is so amazing!! Thanks for sharing and wishing you a life time of NED.

[BadgerBright]

Hi It is always great to hear good news. As hope is much needed. Wishing you every happiness. BB.

[Carpediem68]

Don't be sorry about posting good news! So pleased for you! Positive stories give everyone hope xx

[Leniko]

Please keep testing even after they say. You may have to pay out of pocket, but it is so important as an early detector. They told me I could stop testing after five years and thank God I didn’t. My first recurrence showed up after six years. I might not have caught it if I had stopped.

[Twink333 in reply to Leniko]

Thankyou for your reply and yes I'm determined to keep testing. Wishing you well in the future x

[PPSCENE]

brilliant and brilliant and long may it continue x

[Jannibags]

Brilliant news Twink!❤️ It's so encouraging to know that outcomes are improving gor all of us, albeit perhaps not as quickly as we'd like! I was 1c1 low grade serous in December 2019 and 🤞🤞🤞 still NED when i go for my 6 monthly next Monday🤔! Wishing you continued good health and happiness!xx