3B Survivors

[Saintgermain]

Would love to hear from any long term survivors that haven’t had reoccurrences after debulking and frontline. . I’m 3B low grade endometroid finished treatment NED since October 2021 a newbie my Onc isn’t suggesting an estrogen blocker or post treatment maintenance drug.

[ZenaJ]

Hi, I was 3C with no recurrence and no maintenance after surgery. That was in 2013. There's hope for everyone. I just have regular CA125 checks. All the best, Zena xx

[Saintgermain in reply to ZenaJ]

Thank you so much Zena my CA125 Has been hovering around 6. Did you follow a special diet? Appreciate tips

[ZenaJ in reply to Saintgermain]

Not really. I try to eat veggies and fruit. I don't eat much meat. I do indulge in chocolate every day and haven't given up alcohol although I didn't drink during treatment. I walk a fair bit and play badminton a couple of times a month. I wouldn't say I was any different to anyone else really. I have gained 12 lbs during Covid lockdown which I'm not happy about but hay ho, at least I'm still here.

I'm trying to carry on as normally as I possible can as I don't want to make life a misery or just about having had cancer.

Best wishes, Zena x

[Saintgermain in reply to ZenaJ]

Thanks for sharing I’m very much on the same page I do like meat but limit it to dinning out I also gave up cocktails during chemo but do in moderation enjoy a cocktail. I agree to live life normally you have to move forward be positive and not live in cancers shadow stay on the sunny side of the street

[ZenaJ in reply to Saintgermain]

I couldn't agree more. You sound exactly like me. xx

[Owenmeany]

Hi I’m in the uk, never posted here before but find really useful info. I’ was diagnosed august 2020 grade 3c low grade serous oc. After debulking and 6 rounds of carboplatin finished jan 21 I’ve been Ned since then. I take letrozole daily which is an estrogen blocker normally used in breast cancer treatment , my oncologist told me there’s no specific maintenance treatment for LGSOC. I have 3 monthly blood tests but CA125 is not a reliable marker for LG. So getting on with and enjoying my my life and try no to worry too much about recurrence although I didn’t really have any obvious symptoms when first diagnosed. I wish you well and hope you stay healthy and happy. 😀 Linda

[Saintgermain in reply to Owenmeany]

Hi I’m in the states this is a wonderful site. How do you feel on letrozole? Any side effects? My Gyno/Onc and Onc couldn’t agree on the estrogen blocker (astrozole) I tried it but didn’t like the side effects. I’ve read that about yes everyday is a blessing! Thank you

[Owenmeany in reply to Saintgermain]

Hi I agree, this site is amazing for exchanging experiences. I do get side effects from the letrozole, joint and muscle pain mainly which I can live with. I have recently developed foot pain and pins and needles in my hands and arms which my GP is treating as peripheral neuropathy, I’m taking amitriptaline which has helped with the pins and needles but not the foot pain. I went onto a breast cancer forum to find out about letrozole side effects and several people mentioned foot pain so I’m unsure what is causing it. I’m due more blood tests next week and a follow up with GP so will maybe find out a bit more. Best wishes to you.

[Saintgermain in reply to Owenmeany]

Thank you so much for the info on the letrozole I hope your appointment and blood tests go well.

[SarahBa]

Hi, I too have been diagnosed (Nov '21) with endometrioid epithelial ovarian cancer (Stage 1c2, grade 2).

I live in the UK and my consultant oncologist informed me my ovarian cancer is oestrogen receptor positive. My current treatment (since my hysterectomy) is six cycles of Carboplatin however from now onwards I now have a low oestrogen diet as my cancer feeds off oestrogen. I should add that this is my decision and not something my consultant has told me to do.

I no longer drink alcohol (but was never a huge drinker) and am ensuring I incorporate daily aerobic exercise too.

I have found this website helpful in guiding me as to what to eat and what to avoid:

foodforbreastcancer.com/art...

As my cancer is a CA125 secretor I will be monitored with regular CA125 blood tests. My consultant has not suggested oestrogen blockers.

Wishing you the very best x

[Saintgermain in reply to SarahBa]

Hello Sarah,I’m in the states and like yourself mine is estrogen positive I’ve done quite a lot of reading and following an anti estrogen diet thank God I love broccoli I do like the occasional glass of red wine am so looking forward to getting back to aerobic removing from hernia repair surgery (gift from the hysterectomy) I opted to get it fixed so I could be more active. Thanks a bunch for the link

[Hidden]

Hi I was diagnosed 3b high grade serous in 2016.

I haven’t had a recurrence.

Apart from bowel issues I’ve remained healthy.

Having a few little niggles at the moment that I think I may contact GP about in a few weeks if they don’t settle but other than that I’ve been very very lucky.

I count my blessings every day xx

[Saintgermain in reply to Hidden]

Hi Laurel,Your an inspiration thank you for touching base my bowels have been a little off since the debulking but getting better every day is a blessing a gift

[DianaPrince_]

Diagnosed 3b in December 2019 with high-grade serous ovarian cancer. And BRCa 1 positive. Successful debulking Jan 2020, then six months of carbo & taxol. Have almost 21 months on a parp inhibitor (Olaparib). Three more months to go and then it'll just be blood tests to monitor my ca125.

[Saintgermain in reply to DianaPrince_]

So happy for you from what I’ve read a successful debulking by a qualified Gyno/Onc is key mine was also successful so hoping all good moving forward. 3 more months on the maintenance drug time to celebrate! Blessings from the US

[RoseMS in reply to DianaPrince_]

Hello Diana. I was also diagnosed HGSOC 3C December 2019, chemo, mid way debulking then Olarparib, again with 3 months to go. Nervous about coming off the PARP, are you? Ive had no real issues with it. Blood tests afterward will be 3 monthly. I am based in London, where are you please?

[DianaPrince_ in reply to RoseMS]

I'm nervous but also looking forward to feeling more normal. whatever normal is for me now. Took about a year to get the dose right. Had a couple of blood transfusions. Still struggle with insomnia, joint pain, and fatigue. I'm also based in London. Under the care of the Marsden who have been amazing.

[RoseMS in reply to DianaPrince_]

I transferred by request to the Marsden after chemo, best thing I could do for myself! CA125 has stayed at 6 on PARP, how has yours done? My concern is that if as they say PARP is doing its job suppressing cancer, why not stay on it, maybe at a lower dose? However I understand the NHS only fund for 2 years and that is the recommendation from NICE.

[DianaPrince_ in reply to RoseMS]

As I understand it, and according to the data that's come out after the clinical trials, after two years the protective effect of the parps isn't diminished. The thinking is that with ovarian cancer, microscopic cells might be been missed during surgery and might sleep or go dormant through chemo. So the parp stops any dormant cells that wake up from repairing themselves and so they die. Two years is long enough for any sleeper cells to wake, be unable to repair and so die. So there's no benefit for staying on it longer. In fact, the data shows that after two years on parps the majority of women that haven't recurred, don't. Obviously, I'm not a doctor or have any medical training. So this is just my very basic understanding of the complex, new but very exciting science behind parps.

[RoseMS in reply to DianaPrince_]

Thanks for that explanation, it ties in with my understanding all. And I am aware of the risk of MDS and AML but understand that to be at 1%. Have you had PET scans or will you, at the end of the 2 years? Its something I am going to ask about.

[DianaPrince_ in reply to RoseMS]

I have a scan every 6 months. I think that’s standard practice. My bloods are checked every 3 months. I think I have one three month cycle of oliparib left.

[RoseMS in reply to DianaPrince_]

I’m going into the Marsden tomorrow, called up for my 4th covid jab there.

[Eriksendi]

I was diagnosed May 2017 stage 3b HGS, ovarian/PPC. Lots of bowel issues, had stoma but now have had it reversed but no recurrence so far 🤞🤞I had chemo,debulking in sep 2017, more chemo and no maintenance drugs. I don’t follow a special diet, just healthy foods, not much red meat. I walk daily and still like a glass of red wine.

[Saintgermain in reply to Eriksendi]

Happy Sunday!Thank you for sharing your journey it seems like it takes a bit for the bowel stuff to calm down so happy for you an inspiration! I pretty much follow the same eating exercise pattern as you I like red meat but now a days it’s a special occasion love a nice glass of Red also

[Entito]

Hi there, I was diagnosed Dec 2012, 3c HGS, surgery followed by weekly carbo/taxol. I carry brca2 gene. Have been in remission since July 2013. Still have bloods every 6 months, but that will finish this year when I'll go down to annual. I know I'm very lucky, and I'm very very grateful. Best wishes on your journey.

[Saintgermain in reply to Entito]

What an inspiration all you wonderful ladies responses have been for me! Since 2013 you are very lucky and blessed!

[Lizzieanne]

I was diagnosed in January 2002 Grade 2c. Had oopherectomy and six cycles of carbo and taxol. No parps in those days. Went to hospital for just blood tests tho CA125 was low before diagnosis, for ten years then discharged. Sadly had first recurrence diagnosed in May 2020 18 years on. Ive never taken it for granted as always knew it could return but it was a huge shock and think how can this happen after all this time. But I read other ladies experiences on here and feel guilty as I was so lucky. I had very good health all those years. Sometimes wonder if two hip replacements disturbed a sleeping cancer cell. Ill never know. There are quite a few very long time survivors so try and keep positive, healthy in body and mind and enjoy your life. Every day I would acknowledge what I had. Wishing you good health

[SarahBa in reply to Lizzieanne]

Hi Lizzieanne, sorry to hear you have had a recurrence and after so many years since your initial diagnosis.

Do you mind me asking which type of ovarian cancer it is that you have?

[Lizzieanne in reply to SarahBa]

High grade. Again hardly any info given all those years ago. BRACA negative. Would be great if they would look at long time survivors to see if anything in their or cancer make up predisposes them towards better survival.

[SarahBa in reply to Lizzieanne]

Hi Lizzieanne, I agree with your suggestion. There are so many different types of ovarian cancer and I didn't realise there were so many until I was diagnosed. You with high grade serous, me with endometrioid epithelial.

It really would be helpful if they captured our individual diagnosis into a database for ongoing research.

[Saintgermain in reply to Lizzieanne]

Hi Lizzieanne,A recurrence after 18 years that had to be very hard to wrap your arms around and push thru. I understand your thoughts on the surgeries waking things up I’m a newbie 5 months since last treatment and NED I recently had hernia repair surgery I was thinking the same thing afraid things be moved around and wake up but I also want to be more active so I forged ahead. I agree enjoy every day stay positive and never take anything for granted you’ve done very well because you are healthy and have a great outlook.

[Lizzieanne in reply to Saintgermain]

I never thought about it at the time and was desperate to keep active so dont regret my hip ops. When I was in hospital with pleural effusion in 2020 when I was told this is a recurrence I did say to one of the doctors, who I really liked, about it and he laughed not in a nasty way and said no couldn't be. I said I disagreed especially as I had bone mets which is very unusual with OC but will never know. I am very grateful for the long remission.

[Saintgermain in reply to Lizzieanne]

LizzieanneI think staying active is huge. I wish you the best! Happy Spring!