Firstly, hi to anyone who may stumble across my post. Long story short, I was diagnosed with stage 4 ovarian cancer back in 2020. I had an ultra radical debulking surgery in August that year, followed by 6 rounds of carbo/taxol and maintenance via olaparib.
I had a CT scan back in August which highlighted a mass on the wall of my stomach. An endoscopy, PET scan and an endoscopy with ultrasound and biopsies since have confirmed that I have a 4cm tumour.
How do you cope with recurrence? I'm left not knowing what they plan to do until the new year now. I feel angry, helpless and terrified all at the same time.
P.S, I'm brca1 positive and had previously undergone bilateral preventative mastectomies, ovarian diagnosis just 2 months after turning 36.
Please tell me there is a light ahead, because right now I can't see it 😔
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Guitarplayinghobbit
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Hello, really sorry to read that you have a recurrence and particularly that you are left wondering about the plan at this time of year.
There is hope. They may want to watch and wait if you have no symptoms or they may suggest chemo. If it’s a small area you might be offered radiotherapy.
There will be a way forward.
I am also BRCA 1+ and had a limited response to Olaparib but I did take part in a trial which boosted its effect. This was very good at getting rid of the cancer but sadly the dose was too high and I didn’t tolerate the trial drug. If you can find a trial of drugs that boost Parp inhibitors then you might have a better result than I did.
Or you might find a different trial suits you better.
Recurrence is horrible and another step on your cancer journey but there are things you can do to put yourself back in the driving seat. xx
Hi Lyndy, thank you so much for your reply. I'll be honest, it's the waiting at this time of year. I lost a loved one in April to esophagus cancer, all that really started to present just after the new year and I feel like that is making me feel more anxious than ever too.I have three children, aged 10, 14 and 22. It's a struggle keeping it to myself, but I dare not say anything yet as I don't know what the plan is going forward.
Hopefully, they can do something soon, because it feels like a time bomb waiting to go off. Again, I guess I just wanted to hear from others and what I may be looking at going forward.
I totally understand. I was diagnosed w OVCA in 2008. Had TAH and 6 rounds of Carbo taxol. Was clear until 2014. Then, Tumor on my back muscle (psoas). It’s not operable due to being near my spine. We’ve been managing the tumor via: radiation, Doxil, and longterm Avastin. It keeps the size of the growth in check. Please go to the BEST facility you can get to , there are many treatments now available. Will say prayers for you !
I was officially diagnosed on New Year's eve 2019. I came out of the doctors to find I had a parking ticket, but I digress.
I spent December in the worst state of anxiety / terror i've ever felt. I couldn't eat, sleep or focus.
My diagnosis was a surprise. I had no symptoms and it was a routine ultrasound that found the mass... I was told it was cancer, probs ovarian. But we wouldn't know stage etc. till after Christmas.
To add to my sense of free falling from the side of a high building was that I'd just left my partner, sold my house, and was interviewing for my dream job.
- No partner
- No home
- No job
+ a strong chance of having the cancer
So i did jigsaws. And cried a lot.
But mostly jigsaws. I moved in with my sister. And did jigsaws at her kitchen table. It helped me focus on that moment and not the shit storm that was my life.
Jigsaws might not work for you. But focusing on the now might.
Right now you're ok.
Right now you're with your family.
Right now you're not in pain.
Right now you just need to find that bit of blue sky in the corner of the jigsaw.
right now is all any of us have.
I'm sorry you're facing this again.
But when i consider recurrence, this time i know how to do chemo. I know what i need and what i don't. I know what i need after surgery and how to recover better. i know what to ask the doctors. And what not to google. I know that things have got better in terms of term over the last 5 years.
I didn't know any of those things the first time around and it made it harder.
Thank you for your response, I guess I was feeling sorry for myself when I wrote this post. The worst thing for me is seeing my children watch it happen all over again. One upside I guess is I still have options.
I've taken up diamond painting recently, hopefully that'll be similar to jigsaws in that it'll keep my mind occupied.
When I was diagnosed stage 4b I had already had an ovarian cancer tumour in my stomach.
I had NHS keyhole surgery by gastro surgeon Mr Abassi at Royal Surrey County Hospital in Guildford who removed half my stomach and I now eat like a horse anything I want to! There was no pain, despite having another gynae surgeon operate at the same time to remove so many organs I can't count. I had 5 x 1cm incisions. I had no post operative pain whatsoever. I did have to eat mashed food for about 6 weeks, graduating to lumpy food, just like a baby. And I was very tired after surgery for about 6 weeks.
Just think of Sharon Osbourne and all those people who have bypass surgery to lose weight (actually, I didn't lose any!).
I hope this brings a little ray of light, my dear. All my best wishes, Emma xx
Thank you for your response Emma, I appreciate it. Im sorry to hear that you went through all of that, but conversely, it is a comfort that you recovered relatively well. I've gained so much weight since my surgery, mixture of menopause, medication and lack of gallbladder I suppose. I had hoped that at the very least, I'd lose some, stupid thing to think really, but was trying to find a silver lining. Fingers crossed you are doing well
Hi Guitarplayinghobbit! I had OC back in 2016 ,followed by debunking, chemotherapy and been in remission for 6 years, and just like you got a lump on muscle in abdominal wall, it's 5cm big, it's not classified as very large. Not the best news for Christmas hey? Unfortunately 80 to 90 percent ovarian cancer comes back 😪 it's not curable but it's definitely treatable, I've started on drug called Trametinib, no operation, no chemotherapy, as it's possible to shrink the tumour, as long as its seruos low grade OC (sorry, don't know which is yours) but there is light at the end of the tunnel, please don't give up!!! I hope they will find treatment for you soon, with best wishes, Izoominka1971!!
Hi izoominka! Wow, that's so disappointing that you had been Ned for so long and it came back 😔 very hopeful about your treatment though. Mine is high grade serous, so I don't know if that'd make a difference, the onc team are having an MDT meeting to figure out what next, although I do think chemo was mentioned.Hopefully this treatment works out really well for you ❤️ wishing you the best
Hello, in addition to the guidance from the others above, my contribution is always remember you have a right, within NHS, to ask for a second opinion. If you feel this is needed at anytime, to help you choose wisely, I'd suggest talking your situation with Ovacome Suppoprt Team 0800 008 7054 or via their other links. Many of us on this forum are living longer than the prognosis we were given because we sought second opinions from top flight teams with top flight facilities - Ovacome know them all and many of the leaders of those top flight teams are on the Medical Advisory Board to Ovacome.
Regarding the overwhelming-ness of recurrence, maybe one of their webinars: ovacome.org.uk/emotional-im... may be useful?
Thank you for this, I will definitely bare all of this in mind if what they say at my next appointment doesn't seem right. I honestly didn't realise there were so many resources available, so thank you for thisJem xx
Sorry for what you are going through. My last endoscopy I was 12 years old when I first had Crohn's diagnosis. And I know endoscopy is it for many things my mom had one and unfortunately they found cancer in her esophagus which hopefully they can treat
Hi, I'm very sorry about that. I really do hope they can treat your mum, I know a close family friend who had this, it was horrendous for him. Sending you both my best wishes and positive thoughts for recoveryJem xx
so sorry to hear your diagnosis. However , don’t give up . Are you in the UK ? Ask your oncologist if there are any clinical trials you can take part in . The Royal Marsden in Sutton is the international cancer research hospital so if you are in the London area you could ask to be referred there. Then The Christie in Manchester also does international clinical trials .there may be one that you can take part in . These are opportunities to try new treatments . I do hope you find a solution . However , my best advice although very hard to follow is — Try not to Worry . I used to wake up in a state every night about 2 in the morning as my Ca125 rose whilst on treatment. And I couldn’t get back to sleep. I decided that it was destroying my life and that I had to stop worrying about what might never happen .
Aww looking ahead, thank you for your response. I am in the UK yes, Nottingham, so not sure if it's really doable for me as I'm not mobile, but hopefully there are some options.You are right, I've tried not to worry, it's the not knowing at the moment that is driving me mad, once there's a plan, I'm sure I'll settle.
Nottingham has excellent gynaecological oncologists and the University hospitals are excellent . Have a chat to your oncologist and you can always ask for a referral . I think they may have re started clinical trials at Nottingham for ovarian cancer plus Leicester also do clinical trials . Also , the University hospitals have just started research into treating Ovarian Cancer . Hopefully you are in very good hands . Wishing you a very Happy Christmas ❤️
Hello, As I am going thru my first recurrence, I have to admit it's been harder to wrap my head around than frontlineI'm going on #4 of #6 carbo/taxol/keytruda my midway petscan was now clear. I'm wondering if your tumor is isolated if targeted radiation maybe an option it wasn't for me because I had the recurrence in 2 different spots. There is a light at the end of the tunnel.
Hi Saint Germain, I believe it is isolated to my stomach yes, so maybe 🤔I am sorry you're going through a recurrence and having to do chemo all over again, I do think that's what I'm dreading. It was the school run that did me, having to draw on the brows and glue on lashes just to make myself look normal, but I guess I know what to expect.
Glad your pet scan is clear, fingers crossed it stays that way for a long time, all the best, jem xx
Hoping that radiation could possibly be an option for you or surgery. Totally get the brows and gluing on eyelashes I'm glad prior to being diagnosed I had my eyebrows tattooed after treatment #4 typically I loose my eyelashes I've perfected the strips which can be a pain and then I attach individuals to them please let me know how your appointment with proposed treatment goes.
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