diagnosed HGSOC stage 3A2

[Schnauzer19]

Hi everyone, I’m new to this group as recently diagnosed and currently having 6 sessions of chemo (paclitaxel & carboplatin) every 3 weeks, although just had a delay on my 3rd session as white blood count too low 🤦‍♀️ and awaiting genetic testing results. I just wondered if anyone else has same diagnosis as me and how you are doing? I’ve only come across one or two people on here that have stage 3A but have been told that although I’m on the better end of the stage 3 spectrum I’m at high risk of recurrence 😩. I had no visible disease but microscopic cells on omentum no bigger and in washings. I don’t think I had any lymph nodes removed so don’t know if I have any disease there but nothing visible on any scans I’ve had or when I had op. Any replies would be much appreciated 😊

[Schnauzer19]

correction …. Microscopic cells no bigger than 1.4mm. Also my CA125 peak was only 10 so oncologist saying my cancer cells probably not secreting the hormone, although after 1st chemo it dropped to 6 🤷‍♀️

[ruthg55]

Hi there,

I'm also HGSOC Stage 3A (non BRCA) due to microscopic cells in omentum. I'm sorry to hear that you're also going through this. It is such a shock and takes time to get your head around it. I know how the thought of recurrence can drive you insane - but to give you some optimism, it's now been 8.5yrs since my initial diagnosis and 5yrs since recurrence in a lymph node which was successfully removed with no further treatment after surgery.

I think there are many also doing well but not on this forum (which is a wonderful site) and maybe also women that want to move on when they recover, so we don't get to hear about the success stories.

I hope all goes well with the rest of your chemo. It'll be over before you know it, but let yourself take time to recover.

Ruth x

[Schnauzer19 in reply to ruthg55]

Thankyou Ruth that’s really good to hear. I’m so glad you’re doing so well. I always imagine getting told it’s back must be worse than actually finding out you have the disease in the first place? But great you didn’t have to go through chemo again and it’s been a long time NED for you. Hopefully they’ve got rid of the bugger for good. Sending you lots of love and good wishes, Sally xx

[Boot1947]

Hi. Was diagnosed 3A (BRCA+) nine years ago, fully debulked, 13 weeks of chemo, have never had a recurrence and am still NED. Hope all goes just as well for you. Deb x

[Schnauzer19 in reply to Boot1947]

That’s fantastic news Deb, so good to hear 😊. Thankyou for replying, I need this sort of news lol as Dr Google nowhere near as positive 😊😊. Wishing you a lifetime of NED, Sally xx

[Boot1947 in reply to Schnauzer19]

Thank you so much, Sally. There have been so many developments in treatment for OC that Dr Google is usually way behind. Stick to this site, Macmillan Cancer Support and Cancer Research UK if you want the most up-to-date info and support. Everyone on here is just amazingly supportive and great at sharing info. Fingers crossed your journey goes smoothly. Deb x

[Schnauzer19 in reply to Boot1947]

Thankyou xxx

[Katmal-UK]

Hi, was diagnosed HGS 3B BRAC2 in October 2007, still here despite 2 recurrences and currently over 10 years NED. I have taken part in 3 clinical trials and still on the third. Continued to work full time until I was made redundant 2 years ago. Have a great quality of life and travel when I want (and can afford lol). I was actually speaking with a lady who had stage 3 OC 30 years ago and never had a recurrence . My mum had 3b HGSOC and didn’t have a recurrence. Good luck going forward. I’d like to just add please don’t worry about the what ifs, worrying won’t change anything but what it will do is ruin the here and now, go on living your life, nobody knows what tomorrow will bring for anyone xx Kathy xx

[Schnauzer19 in reply to Katmal-UK]

Hi Kathy, Thankyou for replying, that’s fantastic news you’ve gone 10 years NED. Sorry, it sounds like you’ve had a lot of dealings with this dreadful disease. If I get the all-clear after my chemo I’m going to do my best to not let the worry of a recurrence overpower my life, as you say, none of us know what’s around the corner. Best of luck to you, here’s wishing you a lifetime of NED, Sally xx

[Realistic]

Sounds to me that things will be good for you lm 6 yrs in l have stage 3 high grade serious ovarion had de bulking in 2017 then 2019 they found enlarged lymph node in bowel area went in for biopsy but they took it out turbed out cancerousSo had 6 months long sessions of carbo taxol hard going very long sessions my ca 125 went from over 4,000 to 9 its now 15 lm at present in critical care at MRI lve had to have an 8inch tear repair hence the critical care situation but after waiting and being cancelled so many times lm not complaining keep positive ask questions your important l also haveva brain tumour managed with a proggramable valve in my head. But as the girls and boys on here know l keep booking the flights ✈ and buying the frocks & getting on with life and enjoying it there can be light at the end of the tunnel. And if your not happy ask for a second

Opinion. Good luck stay positive & eat well & try and try and do what you normally do love & hugs SheilaFxxx

[Schnauzer19 in reply to Realistic]

Hi Sheila, thank you for replying, I’m so sorry you’re going through this atm, I do hope you get better soon and carry on booking those flights and buying those frocks! Really glad I joined this group, there’s nothing like hearing from people who’ve actually “walked the walk”😊. Sending you lots of love, get well soon, Sally xx

[Realistic in reply to Schnauzer19]

Love & hugs to you xxx

[Kamloops]

Hi Schnauzer

I’m just 12 months since my diagnosis with 3C HGSOC. Your way of thinking will change over time. My Oncologist told me to think of it as a chronic illness that we will deal with as it happens. It took the pressure of wanting them to tell me I’m all clear and it will never come back. That is natural to want to hear but not realistic. I think of it as saying I want to hear I’ve won the lottery. I became less stressed over time but of course there will be times when it overtakes us. Allow yourself that time but don’t let the worrying of what could happen in the future cause you pain now. I found yoga and practicing being in the moment gave me new skills to help with that. So take care and be patient with yourself. I have just returned from a 2 week holiday in the sun and it was one of the best holidays I’ve had. OC makes us look at life differently. It makes us live in the moment 💕xx

[Schnauzer19 in reply to Kamloops]

Thankyou Kamloops, good advice. It definitely makes you look at life differently. As mentioned earlier, nobody knows what’s around the corner anyway. Good luck for the future xx

[SopSinger]

Just wanted to add my experience to the ladies who have already responded. I had stage Ic ovarian cancer (with a side of endometrial cancer) in 2006 and have been NED ever since completing treatment, so that's now 17 years. I had carboplatin alone as I have a bad allergy history, and like you, my third treatment was postponed because of low neutrophil count. I was 48 and it took about a year to recover from the full effects of chemo (I climbed Vesuvius in September 2007, which was my big achievement in recovery!) Don't focus on recurrence, focus on being and staying well - be sensible about diet but don't go mad depriving yourself of everything you like! My oncologist gave me a great piece of advice, which was that if a new symptom appeared and persisted for two weeks, get it checked out, otherwise DON'T WORRY! Sending hugs!

[Schnauzer19 in reply to SopSinger]

That’s great to hear! I was originally told I was 1c3 but unfortunately got upstaged after 2nd op, as seems to be quiet common unfortunately. I think finding out I’d gone up to stage 3, albeit 3A, was harder to deal with than finding out I had it in the first place. But I absolutely can’t spend my time worrying about it coming back. Thanks for your reply xx

[March2017]

I was diagnosed stage 3a march 2017 no recurrence to date !! One of the lucky ones, no reason why you shouldn’t be to 🤞BRCA 2 Xx

[Schnauzer19 in reply to March2017]

That’s fantastic! Love hearing positive stories, Thankyou for sharing. Can I ask were you put on parp inhibitors after chemo? As I’ve heard they only really work if you have the BRCA gene. I haven’t had my genetic testing results back yet xx

[Pixiepurple]

Hi Schnauzer19, I just want to say best wishes for your treatment. I hope all goes well. I am stage 4 diagnosed in June. Tomorrow will be number 6 chemo treatment. So looking forward to it being over. Best wishes

[Schnauzer19 in reply to Pixiepurple]

Thankyou Pixiepurple, is that your final chemo? I hope everything goes well for you too, I was diagnosed properly in May but didn’t start chemo until end august as needed another op first. Best wishes to you too x

[Pixiepurple in reply to Schnauzer19]

Yes its my final one whoop. I had an op the end of May, diagnosed 12 June & started chemo 29 June. Thankfully all going well. Gynae/oncol team meeting next week to see if I need another op. And then meeting oncologist early Nov. My op they removed right ovary, tube, tumour, and 2 litres of fluid. Felt so much better after it. So if they say I need another op I won't mind, they can take the lot 🤣🤣

[Schnauzer19 in reply to Pixiepurple]

Great! I can’t wait for mine to be over!! Glad you feel better and are not suffering too much with the chemo. Good luck to you xx