Recurrence in Peritoneum

[georgialocksss]

Hi ladies!

Just had an update on my 53 year old Mum. For context, she was diagnosed HGS stage 3c/4a in Jan 2022, had three rounds of chemo, optimal debulking surgery with full hysterectomy and removal of omentum, and then three more rounds of chemo. Declared NED in August 2022, and has been on Avastin every three weeks since then. Blood tests in January showed a slow but steady rise in her CA125, so she went for scans, and today she met with her consultant to receive the results.

Basically, her consultant — Dr Rebecca Kristeleit at Guy's Hospital — said that there's been a recurrence in the peritoneum. Mum said she was actually very positive, and said that essentially from the scans it doesn't look like an enormous recurrence (which explains why Mum has no pain or anything). She explained that they'll stop the Avastin, and move instead to 6 sessions of Caelyx chemotherapy over six months, followed by taking a daily PARP inhibitor.

We feel quite positive because she said "although this is chronic and clearly the cancer will never fully go away, it can definitely be well managed — and that's what we will do". And Mum said she was generally quite optimistic and confident.

But clearly, I've made the massive error of now going to Dr Google, and have got really freaked out reading about survival statistics and all that. Which is silly, I know, but it's got me all worked up sitting at my desk at work!

Would just love to hear any advice/anecdotes from you brilliant ladies. I really appreciate hearing from you, an would love to hear about how the process of managing your cancer has gone.

Thanks a lot,

Georgia x

[Lyndy2]

Sending you a big squeeze! Your Mum is not a statistic, she’s a relatively young patient with a disease that is known for its ability to reappear. Fortunately, your Mum has a crack team on her side and these days, many more options when it comes to getting rid of the cancer and keeping it at bay.

I probably had a life expectancy of 18 months at diagnosis (stage 4 hgs) but here I am nearly 8 years on and on a trial for another new drug that should benefit us all in the next few years xx

[georgialocksss in reply to Lyndy2]

Thanks so much Lyndy! You're right! And so good to hear that you're still doing so well! Xxx

[Caleda4]

Hi there, Like Lyndy, I have done eight years withy high grade serous ovarian had 2 recurrences had chemo for first one followed by parp, then 2nd recurrence in 2022 finished chemo in August, & so far I am on watch and wait. I will reiterate what Lyndy said about your mum's age, she is young and there are new treatments coming in all the time. I am 78 and due to age i definitely feel so lucky to be here. I am a very fit person,eat a good diet etc. Please stay away from Dr Google because honestly things change rapidly regarding research & in general terms so many people are living with cancer.

Take care, Your mum is in good hands. x

[Ova-whelmed]

Hi Georgia I have stage 4 ovarian cancer I diagnosed in 2020 I had similar first line treatment to your mum and was also NED. I had a reoccurance in the peritoneum in November I've been on caelyx and carboplatin since and I've got 2 more rounds to go.

Yesterday I had the result of my mid treatment scan and the cancer barely visable and my Ca125 has returned to normal.

Like your mum I remain hopeful that this pesky disease can be treated like a chronic condition and I can carry on with my life.

[2016Mags]

Hi Georgia, I have stage 3C high grade serous and on my 3rd recurrence since 2016. My cancer returned in March 22 in the peritoneum, surgery unsuccessful in June 22 and on chemotherapy up until December, now on Avastin. Last scan shows cancer in the peritoneum nearly completely resolved, I also read Dr. Google at the time and thought I was doomed. Have something else on the scan that the Radiologist needs to take a second look at so fingers crossed, I am 58 years of age, started this journey at 51 but count everyday as a blessing. Take care of yourself, as parents the worst part of this illness is putting our families through the stress and worry too xxx

[mrstadpole]

Well this sounds very much like my story.I didn't have all six caelyx because of lockdown and they thought it was safer for me to have just the four doses .I was then given a PARP and I have been taking that since 2020 so 3 years this June.I have been very lucky and my CA125 has remained between 4/5.

Good luck for your mum xx

[NewtonEmma1900]

I am older than your Mum (71) and have cancer in the peritoneum which was diagnosed stage 3c in Autumn 2021. I have had carbo/taxol, debulking and then a short period on Avastin. I was very scared when the CA 125 started to rise again and had a PET scan which showed spread and recurrence. Since then I have had 6xcarbo/caelyx and am now taking a PARP. So far this time the CA125 is remaining low at 7, although we are currently trying to manage the dose. I urge you not to dwell on statistics, our bodies are all different. Try not to look too far forward and enjoy life and live in the present. As others have said there are new treatments all the time: this is what keeps me going! Best wishes Katy

[Hidden]

I too made the mistake of looking on Dr Google and ended up on diazepam freaking out and terrible anxiety attacks.My diagnosis and treatment plan is going well, nothing like the dreaded stuff you read on google so just shows statistically we are all different. Please stay of Dr Google...listen to the doc who is there to treat your mum and aware of her needs. I have a lady whom I've met at my chemo sessions who had a recurrence of peratonium cancer, she has had debulking and on her 6th round of chemo, CA125 now at 16 and last CT showed no signs of cancer.

She looks so well!

Things are changing every day...treatment plans are improving. Your mum is young (I'm 53 too) my daughter is a nervous wreck and cried when she first saw me with no hair! I'm fine but totally aware that our children are so young still and struggle to deal with the awful disease.

Take care and remember to chat on here if you need to talk.

Xxx

[Saintgermain in reply to Hidden]

Hi Bunny, I just had to share early on in my journey I did the same thing and ended up on xanax to turn off the "hamster wheel in my head" I think I had myself so worked up that the treatment was easier than I anticipated. Thanks for sharing.

[Hidden in reply to Saintgermain]

Our mental health is so affected by this so we must look after that tooTake care and hugs x

[SKpaints1]

Hi Georgia my situation is very similar to your mum, stage 3c, spread to omentum and also my bowel, I to had recurrence in the peritoneum and had further chemo caelyx/carboplatin which finished in august 2022 and I was given the parp inhibitor rubraca, few hiccups along the way ie fatigue but my oncologist is looking at reducing the dosage to hopefully give me my zest for life back. Your mum is young and she will be closely monitored which is great! I have blood tests every month and also speak to my oncologist to talk over results. Oh bless you I understand your concern, I to have a beautiful daughter who worries so much… keep away from Google, always give worse case statistics which is so scary, there are so many new drugs coming out to keep the lid on the cancer and help you live a good life😊😊 big hugs and all the best to your mum x

[Sashay2020]

Hello Georgia. I’m sorry your mom (and you) must live with Ovarian Cancer. I will be 72 this month and have one adult daughter, who like you, is very supportive. I just want to add a caveat to the wonderful advice given by the ladies so far. I find that Google has been a great friend to me, once I learned how to limit what I search for. Like many others, I began looking for statistics that might cheer me. That didn’t go too well. So I don’t look for stats anymore. I do look for survivor stories. Google is how I found Ovacome! Google is how I learned that using frozen booties and gloves during chemo might help prevent neuropathy in my feet and hands. It worked for me. I have found encouragement regarding things that have helped me. I agree with my teal sisters that Google can lead you to despair. I think the cardinal rule is to consider the source. I have found so much great information out there. If you happen across something negative, don’t dwell there. Move along to something uplifting. If you are unable to do that, then I join the others in saying avoid Google.

All the best to you and your mother.

Sashay

[Saintgermain]

Google can freak one out but as my Onc reminded me that the statistics are at least 5 years old and OC is such an individual journey 2 people with the same diagnoses sub type can have very different journey's and with today's advances it is being treated as more of a chronic disease. Sending you a big hug from Chicago I'm glad your Mum is optimistic a sunny disposition really helps please keep us posted.

[Uniquem]

Hi, Georgia, I'm also a daughter of OC survivor and I'm sending you a big hug! Just like the ladies in the comments, I would advise you to stay away from outdated information and remember our mothers are not statistics. My mother was diagnosed with Stage 4 in December 2019. She had debulking surgery, and pleural effusion draining, followed by 6 rounds of chemo. She has been taking Olaparib and with stable since September 2020. (You can read her full story in my profile).I always try to see this disease as a chronic one and remind myself that recurrences happen, but that doesn't mean it's the end of the world - they're just another step in the path to overcome. Stay strong and positive and i wish all the best to your mum and you. ❤️

[MaJay]

Google is horrible! Keep in mind that most of those statistics are 10+ years old and much has changed in the more recent years! Narrow your search to just that most recent 1-2 years and you’ll see it’s much better! Still scary but know they’re improving treatment and opyall the time.