Hi ladies,I haven't posted on here for a while, but I've just found out that my cancer has come back. I was initially diagnosed in October 2021 with stage 4 HGSOC and had 6 rounds of carbotaxol with a total abdominal hysterectomy and omentectomy after the 3rd cycle. I then went on to Olaparib, initially with avastin, and have done about 1 year 10 months of that, but my last 2 blood tests showed my CA125 was rising and a scan showed that I have a recurrence in my stomach lining and (I think) something in my liver.
I'm just hoping to hear from some of you lovely ladies who have recurred and beaten it again, especially if you've had it in your stomach/liver, as I'm just feeling constantly nervous at the moment, you know when you can't get rid of those butterflies?! I don't know why I'm so nervous, as I know what I'm facing this time, and I responded well to chemo last time. I was just hoping to have longer before recurring I guess, and there's these horrible little niggly thoughts that keep telling me that this will be it. (It doesn't help that my lovely mum, who had oesophageal cancer 24 years ago, recurred in her stomach, and that's the one she couldn't beat.) I've got 4 daughters, 3 of them are technically grown ups (but at uni) but my youngest is only 13 and I need to get her to adulthood! None of them are close to their dad (we divorced 7 years ago) and I can't help worrying what they will do if anything happens to me.
I didn't seem to have quite so many worries the first time round, perhaps because it was all a bit of a whirlwind and there was no time to worry, but I need some positive thoughts to replace these devils on my shoulders please 🙏
Ps sorry for the huge post, I obviously needed to vent a little!
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I had my first operation/chemo in 2014 and first recurrence in 2017. I had second surgery in January 2018 then chemo and i have been clear until this year, now i too have a recurrence but on my lung. So i went much longer the second time than the first time. Ovarian cancer is very individual and has no pattern or prediction is my experience to date (except maybe its never completely gone!).
I dealt with it the second time by telling myself it was just a tiny bit the chemo missed and this time it will get rid of it! I also have a meltdown/crisis ‘what if’ moment then i get a plan and crack on with it, we dont really have a choice. My children were uni aged and i have now seen them both married and grandchildren, something i never dreamed of.
Allow yourself to be angry worried and disappointed it’s normal but dont write yourself off yet, it will soon be time to pack it away again in a box in your head until it needs dusting off again xx
Thank you so much Diane, I had kind of written off grandchildren so you've given me some hope! Good luck with this recurrence, let's hope we both go longer than the last time this time around 🤞
good morning my lovely , I am stage 4b NO surgery for me but similar protocol.. 6 rounds chemo then avastin & olaparib didn’t quite make the 15 rounds before My ca125 has steadily increased over the last 12 weeks and I’m waiting for CT scan results as you can imagine my mind is a whirl, however I’ve read of ladies who are still battling after the operation you have so much more hope .. 11.5 years one lady 3 ops and still hopeful .. so don’t loose hope xx🩵🩵🩵
I feel for you Tracey, the waiting is the worst. I was kind of relieved when they gave me my results, even though they were bad, as I had been on tenterhooks for five weeks waiting for my consultant to ring me! Good luck to you, and thank you so much for replying 💙
Yes its difficult having reoccurance, i was on olparib for 2 years after this. My ct scan is clear but bloods still been rising its a worry still and i have 3 monthly scans and bloods. i have 3 daughters too youngest still at home. Theres so many treatments now and its hard but ive read people having few reoccurances still here. We have to try be positive its not easy
It's good your scan was clear but I understand your worry, it's almost easier to accept that they can see something and then treat it, rather than having mystery bloods and keeping on worrying. I hope your scans are clear for a long time to come 🤞I'm usually really positive, one of my best friends calls me 'stoic' as I usually deal with things well. I think I was having a bit of a blip last night!
Reading your post makes me emotional. I never had anything like what you had but I did have to go thru a total hysterectomy due to a tumour on my ovaries at 39 and the thought of my little girl on her own was the hardest part so I totally understand your worries. Stay strong Lovely you’ve got this xxxx
Thinking of you; it must be very scary and I totally understand your worries, if I have a recurrence I will be the same, but we’re all allowed these moments. You must think of all the ladies on this forum that have recurred and are still here many many years later. Have your moments but dust yourself down and let battle 2 commence, it’ll be over before you know it and you never know this could be the only recurrence you have 🤞🤞. This insidious disease makes you mentally strong, dealing with stuff you never thought you’d have to, but you got through it before and you’ll get through it now. Sending love, hugs and positive vibes 😊
hello, I have had 2 recurrences, ( inc liver and abdo) 3 surgeries and 3 rounds chemo and am now on trial drug. There are lots of options for you so hang in there. You may feel a teeny bit easier when they give you the plan ? Let us know how you get on xx
Wow, you've been through a lot. You're right, I haven't had the full plan from my consultant yet so I think that's why I'm still on edge, but I'm feeling much more positive today xx
Thinking of you….I was initially diagnosed around the same time stage 3 HG.
I then reoccurred in September and was just being monitored with a bit of Letrazole thrown in.
Became symptomatic so chemo recommenced and I’m currently on cycle 2 of Carbo/Gem.
I found myself more depressed with the reoccurrence than with the initial diagnosis.
However you do come to terms with it and deal with it .
So many women on here seem to keep going.
Just don’t think you can tell what the disease will do. I can say though the symptoms I was getting before starting chemo have pretty much gone so hopefully it’s having an impact.
It’s ok but 2nd one had to be delayed due to low neutrophils. Finding nausea and constipation the worst.
I don’t know what determines their choice on what to give you. You would think they would all follow the same format.
xx
hello just read your story it is daunting, mines come back 3 times in three years I'm now on Rucaprib but can only tolerate half the dose and after one month my numbers are going up from 27 to 42. Just wanted to ask anyone out there if I need another scan my oncologist is really unhelpful in that I am allergic to contrast dye and she refuses to give me mri because of the cost but other people seem to get it my ct scans seem to show just a few nodules but she is so vague I am going to pay for it myself if she refuses to do it next time is there anyone else out there who is allergic to contrast dye and if so do you get mri with clearer pictures? Take one day at a time that's all you can do and I wish you luck for the future
When first diagnosed 3 years ago, I was stage 4b and the ovarian cancer was already in my stomach.
I had carbo taxol and after fifth round, had massive op by keyhole, in which they removed half my stomach, etc, etc. . Followed by one more carbo taxol. The stomach op was truly not a problem. It just meant eating pureed food for a couple of weeks and then mashed food for a few weeks more, like weaning a baby. My digestion has been fine throughout and I can eat anything I fancy now. If you need this kind of op, just think Sharon Osbourne and all those who have stomach reductions to lose weight! I never lost any!
After the op, they thought there was something on my liver and I had a couple of scans and then they lost interest in my liver, so I will put that down as a freckle.
I was on Olaparib for 2 years and finished that four months ago.
My message is, don't think having it in your stomach is curtains. Take heart.
Thank you so much for your reply, I know I'm not being logical being more worried about it being in my stomach! And yes, I'll just consider it free weight-loss surgery if I need another op 😂 So glad everything's gone well for you so far, long may it continue xx
Try not to worry you will get through this. I’ve had two recurrences now and am still doing pretty well 4 years after diagnosis. Ive had progressing throughout my pelvic area but it’s being treated.
Stay strong and positive and be grateful for every day. Also find joy in every day and you’ll find the worry will disappear.
Uncertainty is always awful, and the process is well-defined for first diagnosis, but there's much more variation with recurrence. I've just had a follow-up phone call from a colorectal nurse after a colonoscopy three months ago, and I've given her a right earful about poor communication. The one thing that can help us is knowing what's going to happen, whether it's over the next few days, weeks or months. Keep in touch with your team, make sure they let you know promptly when treatments are planned and scheduled. Sending hugs!
I was NED for 22 months. recurred last Fall I sailed pretty much thru frontline the recurrence was very hard to wrap my head around. CA125 is a good indicator for me spiked from 15 to 500 in 3 months completed 6 treatments of Carbo/Taxol/Keytruda Maintenace is letrozole and Keytruda infusions every 6 weeks. my CA125 rose a bit recently but I had a UTI and abscessed tooth that had to be taken out awaiting an implant cha-ching have a pet scan in a couple of weeks. Vent, cry, get mad get it out. I try not to overread things or I'll drive myself batty!
Hi. I was diagnosed in 2018 and am currently on chemo for second recurrence. I was really numb when I found out. I’d been ned on Olaparib for three years and one year after and I just couldn’t accept it until I started chemo. I cheered up then and just started dealing with it. Now I’m on a slight break which happily coincided with a long-planned trip to Italy (leaving tomorrow) because I had an allergic reaction to carboplatin last time. So I’m waiting for a spot in the desensitization unit to open up. It makes me nervous waiting but I’m going to enjoy the trip because I dont know what the future holds. I’m sure you’ll have options. Being there for your youngest is a strong motivation to put up with the treatments. I’m thankful my kids are adults and I have grandchildren. If I were in your shoes I would feel the same as you.
Yes I think I'll feel better once treatment has started, at least you're doing something about it then aren't you? Have a fantastic trip to Italy 🇮🇹 xx
Just wanted to send hugs as I know it’s tough dealing with a recurrence, mine recurred after 5 years and I had a further huge debulking, only for it to return again after 6 months. I’ve been on Letrozole now for 6 months and that’s keeping me stable with scans every 3 months.
Even though recurrence was what I always feared I have honestly accepted what’s happened now and realise I am living with cancer now, and I’m actually feeling really well. A few niggles but I’m working full time, planning holidays and feeling optimistic. Always feel anxious around scan time then breathe a sigh of relief when my results are stable. I’d like to hope I’ll reach NED status again but if not I’ll take stability and be happy making plans in 3 month chunks! I know the disease is tough but there’s life to be lived inbetween all the appointments, and I really hope this next lot of treatment gives you brilliant results. You’re not alone here and everyone understands what a rollercoaster this is, sending lots of hugs to you xx
Oh gosh, you've been through so much - I'm so glad everything is stable for you at the moment. I had got to the point where I was feeling optimistic and booking holidays, and now I have to fit 2 long weekends abroad in May and June in between my first and second rounds of chemo! Thank you for the hugs, they're always appreciated 😊
Me too! I also play the flute in a local orchestra and we have 2 concerts coming up in June, just after what will probably be my second session of chemo - making music is what makes me happy so I'm hoping that I'll be well enough to play 🤞🎵
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