It’s come back…feeling like rubbish

[KelOC38]

After being on Olaparib for 2 years it’s back. I have had very low CA125 and a clear scan in June. Last week bloods went crazy and was asked in for a scan. Today they’ve told me there is evidence of disease. They think they might be able to do surgery and then chemo again. They’ve said now that it’ll just keep coming back and basically they’ll keep me going for as long as possible. I am 40 well 41 in two weeks. This has been part of my life since June 2022. All I wanted to do was live to see my daughter get through school. She’s 11. I’m so sad. Nobody expected this as everything had been going so well. I’m so angry. Life just isn’t fair. Tonight I had to sit down and tell my child that cancer had come back. I’m just venting.

[Kjpip]

Hiya, no it's not fair and you need to vent. I'm in the same boat, although a few months further forward, and felt exactly the same way. I only completed 18 months on olaparib but was feeling a bit smug with myself that I was so well, tolerating the full dose of olaparib, living life pretty normally etc and I think we invent a secret place in our minds where we're the one person who won't get a recurrence. I was Stage 4a when first diagnosed in October 21, so it was always going to come back, I just hoped I could be NED for longer than 18 months.

Once you get a plan in place you will feel better - I promise - it's always worse when you don't know what's going to happen. There are ladies on here who have had a much longer interval between recurrences after the first one, which made me feel much better. Hearing I was recurring just made me think it was the beginning of the end - and like you I have kids I need to see to adulthood, I'm a single mum and their dad is useless! - but it's really not and we just need to keep on keeping on. This disease will always keep coming back, but new treatments are being trialled all the time and hopefully the good doctors, and maybe will power, will help us kick its arse!

Anyway, I'm now due my penultimate treatment next week, I've been having gem-carbo, which has been much kinder to me than the taxo-carbol I had first time round, and my CA125 has come right back down to 9 which I'm taking as a good sign. I had a scan last week so hoping that will show good things too.

I really hope you get a good plan in place, try and stay positive (difficult I know, especially at the moment) and let us know how you get on xx

[SuffolkJen]

Hi KelOC38

Vent all you need to! You’ve every right to feel angry and it’s so unfair and I’m soo sorry that it’s back 🥲

Please take heart that lots & lots of lovely ladies on this site have had a recurrence and have knocked it back time after time for many years. Everyone is different and the fact you feel soo well is surely a positive thing, plus they seem to have a treatment plan in mind for you so there is still hope to get you back in remission…..

Sending you a virtual hug xx Jen

[Lara1]

Hi KelOC38,

My heart goes out to you. My daughter is 9 and every time I think about a recurrence I picture myself telling her that it’s back and I need more treatment, like you just had to do. Accept the reality of it then go back fighting it all the way through. You got this.. for her and for you. ❤️

[Bananasmoothie]

thinking of you ❤️

[wendydee]

There’s nothing I can say really, except to agree….its so unfair. It's such a difficult situation all round. Always so hard for us to talk to children about the bad news that a recurrence brings, too. The only crumb of comfort that I can offer, after nearly 4pm years of teaching 9-11 year olds, is that children are often surprisingly pragmatic and accepting. You probably know that Macmillan have a booklet (or maybe a fact sheet) on talking to children about a cancer diagnosis. I don’t know if it will help….? There’s a fact sheet on a website that I help with. copescharity.co.uk. Look under ‘support’ and scroll down to the bottom, just above where it says ‘donate’. Click on the box ‘Talking to Children about a cancer diagnosis’. A lot of it is for the initial diagnosis and is irrelevant but you may find something helpful in there.

All I can do is send you a big hug and lots of ((((posivibes)))). There may be a trial somewhere, or some new treatment that will open up the options and make things a bit easier for you. Give the Ovacome team a ring next week and see if they can suggest anything to help you. 0800 008 7054.

Wishing you strength and some comfort

Wendy xx

[Bettyxxx]

hi there

Please vent it is very good for you, and when you are ready box it up again and go onto part 2 xxx. I was diagnosed in 2013, recurred in 2017 and had another operation and more chemo. I finished treatment in 2018 and still off treatment and doing well. So this is longer than the first time, I couldn’t tolerate niraparib and really worried that the end would be coming soon as they told me the same as you. Sometimes we go longer so dont give up hope your body is individual and not a statistic and as others have said new things are coming along all the time. Its a shame to let worrying about tomorrow ruin today with your lovely family. I celebrated my 50th birthday during chemo the first time and just had my 60th this year xxx

Good luck in your journey stay strong xx

Diane

[bettycor in reply to Bettyxxx]

I was diagnosed with 3c/4a in January this year. Have had 10 chemo, slower response than expected. Surgery scheduled for 10/8. Hearing from someone like you who is a long-term survivor is so helpful to me. Thanks for posting.

[Bettyxxx in reply to bettycor]

Good luck with your surgery xx i was 3c but downgraded to 3 b after the operation xx

All the best

Diane

[Tulips66]

Hi, sorry it has come back & I & all the other ladies on here know how angry & sad you are feeling. I hope my story can give you plenty of hope, that you will be around longer than you are thinking at the moment. I was 52 diagnosed in 2019 . My daughter's were 16 yrs & 19 yrs at the time & I was devastated thinking I would never see one finish school & the other finish & Graduate from college. It hasn't been easy as , I recurred in 2020 & again last Jan but I have seen both my daughter's get through school, college & they are now both happily working in their chosen careers . I have had very little time off treatment, but to me it doesn't matter as I am still here to see them happy, so please don't feel that you won't be around to see your daughter hit all these milestones, just stay positive, enjoy your time with her making lots of lovely memories. There are always new treatments available as time goes on too so there is always hope .!!!!!💞

[SopSinger]

It is indeed unfair and I'm so sorry you're going through this. You may be on and off treatment for years - many ladies live with OvCa as a chronic disease and can enjoy many years of relatively healthy life. Sending hugs to you and your family, hoping you see your daughter finish school and make her way in the world.

[0151tmac69]

I was olparib for 3B HGS same as you 2 years then had progression of ovarian cancer to area near my pancreas. Luckily not attached. Ive just had surgery as it was isolated just one lymph node i was lucky no other disease in my body. I 🙏 i go longer this is my 2nd reoccurance. Its just a waiting game its so hard!! Take care xx

[JingJingLove]

Sorry to hear that! What is your genetic status? Do you have Brac mutation?