Dear friends. I was diagnosed with OC stage 3c in February 2018 and finished first line chemo in September 2018. Avastin continued until May of this year. I had a CT scan this week as ca125 up to 71 and saw oncologist yesterday. She said I have some fluid around one lung and a bit of fluid in the peritoneum. The plan is to start carbo/caelyx on the 17th and then Olaparib (I'm BRCA2+ve) if I respond well. Apart from the huge shock of this recurrence is the fact that I've now been reading up and fluid near the lungs makes me a stage 4 (I think). The doctor never mentioned this yesterday. My darling daughters are 12 and 15 and I'm only 52 and this is heartbreaking for me. I feel in complete despair and disbelief at our potential lack of future. Please give me some words of comfort if you can.
thanks,
sticky3006
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sticky3006
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I am so sorry that it’s found it’s way back but don’t despair... I was stage 4 at diagnosis and had fluid on my lungs. You can get through this and out the other side.
I am not sure how staging works but I think it doesn’t necessarily change after you are diagnosed and as a well respected oncologist said to me ‘OC doesn’t play by the normal rules for cancer’ so staging may not be such a useful measure.
The main thing is that they are on it and you have a treatment plan.
Thank you Lyndy. I've jut got myself into a complete panic. Let's hope that after a nights sleep I'll feel a bit calmer. Hope you're well, sticky3006 xx
My first recurrence was confirmed in August and it was a horrendous shock, worse I think than the initial diagnosis. Once I accepted it, I was keen to get back into treatment. I was stage 4 at diagnosis so on the plus side, my staging can't get any worse! 😁 I researched and read lots of papers online and one comment has stayed with me and given me hope and encouragement. "many women with advance OC, recur once and then never do again" I have every thing crossed that I am one of those women, and hope that you are too! Many women on here have been on a parb such as Olaparib for many years. There is always hope. Good Luck with your treatment. x
Thank you lyn1987. It’s been a day of high emotion. I feel I want to weep continually at the injustice of it all. So much has changed in such a short space of time that I often still can’t believe I’ve got this diagnosis. I’m sure tomorrow I’ll pick myself up, do a brisk dog walk as planned, take eldest daughter to netball and then cook for our friends in the evening. My stubborn, battling self will return as though nothing was wrong. Let the battle commence! 💪🏼X
.....Forgot to say, I am currently on Caeylx/Carbo and apart from fatigue and a few minor symptoms, it is a walk in the park compared to taxol. Good Luck x
Hi. Firstly Im sorry to hear about yr recurrence, I felt the news of a recurrence was somehow more of a blow than the original diagnosis so know how devastated you feel. Im stage 3, BRAC2 and have had 2 recurrences. Im currently trialling Olaparib, minimal side effects, still working and have been NED for over 6 years so the fact that you are going to be getting Olaparib which has good results for BRAC ladies is a very positive! Still here 12 years (this month) after diagnosis at the age of 48. There is hope, hold onto the fact you will be having Olaparib xx Kathy xx
Thank you Katmal. I feel more positive this morning and yes, the Parps are a beacon of hope for all of us ladies now regardless of BRCA status. Your posts show us that despite recurrences we can still keep going and live a 'normal' life. Onwards and upwards now! Off to walk the dog and thanks again. sticky3006 x
From what I know of high grade OC, it seems to be rarely diagnosed until it’s at least grade 3, and at that point I’d say the grading is quite arbitrary. I was graded at stage 3, but was then given a letter saying I am grade 4. At that point I went into meltdown (again). My youngest is also 12, and the thought of her facing her teenage years without me ... Anyway enough. There’s no difference in the way you will receive treatment between grade 3 and 4. I’ve been on lots of groups and fb pages etc, it’s not research but I’d say there’s not much difference in outcomes either. You have as much chance as any of us of getting through this and having many more years. I have read everything I can, have turned down some treatments and sought out others, I think you have to feel some element of control and be happy that you’re doing what you can. All best wishes to you and just to say, caelyx is not too bad - just reach for the antacids!
thank you for your reply. I've picked myself up today and will carry on regardless. I think we amaze ourselves with our strength and resillience when the chips are down. Having young children means little time to wallow in self pity which can only be good! I'll also not have such a large glass of wine tonight as that didn't help me mood! thanks again, sticky3006 x
I can't add much more to the great insights and advice above but send you luck and empathy for the shock you're feeling at recurrence. I was left reeling at first but I'm still here and pretty well five years after my first recurrence. Here's to success with your next line of treatment and many fun times with your lovely girlies.
Hi Sticky, this is my first post after a few months of reading and taking comfort from others. I cried when I read your message as your situation is so similar to mine. I was diagnosed in Jan 2018 with stage 3c OC, Fallopian tube actually., but it's treated the same. I was 52 and my daughter was 6. I am BRAC 2. After surgery I did Taxol/Carbo to which they added Avastin for the last 3 cycles. The Avastin promised alot but unfortunately I had my first recurrence in Feb 2019. After having battled to that point the recurrence felt worse than the initial diagnosis, but our children need us so we keep going. My daughter who was then 7 knew alot of what was going on simply said " Mum, you're fighting this disease like a war and it's time to change weapons!" I don't know where she got that from, but I couldn't argue with it!
On Thursday I completed my 6th Caelyx/Carbo which although easier than the Taxol/Carbo had to be delayed several times as my neutrophils weren't recovering. My oncologist explained that the Caelyx stays in the system a little longer so you have it every 4 weeks, but once I had an 8 week gap. Don't worry if this happens. It's just to give your body time to recover for the next lot. I am starting Olaparib on the ICON9 trial in November in the hope that it will maintain me until the next new treatment comes along. I wish you lots of strength and positivity with the next stage of this difficult journey. I know in the middle of the night when lots of thoughts are rushing through your head you feel like you are all alone. There are many of us travelling together. Many of us with children who we will give us the strength and purpose to overcome all the challenges this disease presents us with. Sending lots of hugs. Miss Stubborn
Thank you. Your post made me cry too 😔. Your daughter was so right. Its amazing what our children can say in a simple way which speaks volumes. I’ve decided not to stress over the staging. At diagnosis I was 3c so I’ll stick with that but as bluepeterella said it’s arbitrary really. Good luck to you with the Icon 9 trial which looks promising as Olaparib given either way. Enjoy your daughter and stay strong in mind and spirit x
I don't always understand the staging. I had some fluid round my right lung at diagnosis 11 years ago. It was a pleural effusion. Although it was caused by the cancer, they found no cancer cells in it, the only cancer cells away from my ovary were in some fluid in my abdomen, & I was staged 1c. Although my oc has recurred since, I've had no recurrence of the fluid round my lungs. Your oncologists should be able to advise you about your stage. I hope your treatment soon clears it.
I know it's really scary when your cancer recurs. I remember feeling really depressed & scared the first time mine recurred. But it's possible to get through it & carry on with your life. Di
So sorry it's come back but that doesn't mean it's the end of everything. You're still in shock from the news and have the normal reaction anyone would.
Good news, they've found it and are going to treat it. Everything will be done to help you. Have a word with Macmillan. They're very good.
I'm so sorry to hear your news. Like others have said, it's good that it's being acted on quickly, although that probably feels like little consolation. Sending you big hugs xx
Sticky, diagnosed 3C 4 years ago. Just finishing carbo/gem for 2nd recurrence and getting a complete response. CA normal, starting Olaparib/Lynparza in few weeks. You can do this! My quality of life still good. Hang in there! I am Somatic BRCA1 and HRD+.
I know you have been receiving plenty of this forum’s good advice.
Just wanted to also agree that just because you have fluid around your lungs (the awful Pleural Effusion) you do not go up a stage.
Like me, it was just awful fluid, but no lung involvement.
Carbon and Caelyx are usually tolerable, but you have to give in to the regimen- let yourself have complete bed rest that first week after infusion and then watch yourself perk up.
It’s easy for me to give advice, but I am having a difficult time following it as I go through my current clinical trial.
Everyone is different, and we all react surprisingly different to the side effects of our toxic meds.
Fortunately, they usually work. You just have to give in to another 6 months of weirdness, something I am facing now.
It’s sad, but most of us have been around this block before.
I am definitely better this week, but still pretty bad. Nearly fainted this morning from the strain of walking 10 feet to the room where I keep the Glucosometre for this trial. Managed to make it to a set of stairs outside my bedroom door.
Couldn’t make it back to bed. Sat there til I got my breath back.
I don’t have the aches I had last week, but still have the total weakness, nausea, diarrhoea and breathlessness, worse today than yesterday.
So I have to give in to this regimen and stay in bed weds to Monday.
This Tuesday is the last week of the first cycle and I get a week off after this, so hopefully I will recover and have a bit of a life for a while.
My heart goes out to you... I am so sorry for the emotional suffering. It's good to be able to outreach here and get support. Reading your responses to people, I see you have a warm heart, and you are strong and positive!
I recall my first recurrence (diagnosed Jan 2016)... it came really soon also, less than a year. I was upset because I felt that it meant it would keep coming back. My doc said that wasn't true... but I don't believe that. Anyway, I recall once someone tried to comfort me explaining that 'you get used to it.' That phrase landed like a lead balloon at the time.
I am 68 btw. I have been on chemo for 3 years, with a few months off, but then it comes back. One doc told me my kind usually just comes back, stage 4 uterine but something like ovarian they say. She said people like me just stay on chemo. That doesn't sound too bad to me now.
I want to say that now I have gotten back to my life. I just got off chemo again about a month ago, so it might come back. I was on for a year, Carbo gemzar and avastin. I was NED most of that time.
This time I guess I really expect it to come back, but I will be a bit sad. I am protecting myself by not having expectations.
I hear that people can live a really long time on chemo... plus they are always inventing new things. My doc said there are so many chemos or immunotherapy to try, and that could take years and years.
At first it seemed shocking when diagnosed, but lots and lots of people survive well, so I try to get past the stigma of having cancer. Whenever I tell someone they act like it's so horrible, but after 3 years, so far it hasn't been except for the shock... which took almost 3 years to get over...
Meanwhile I work hard at taking care and eating right and exercising. I have a few side effects from the chemo, but pretty minor. I do feel good in general. I did 'get used to it.' I have gotten wiser and deeper. Now that I look back over the last 3 years I see that I had much time of peace and positive feelings, courage, etc. Maybe it's good to value some small things.
Yes, the staging stays the same, as Lyndy says below, I also think. I have spoken to people NED from stage 4 also. One thing that helps me is to try not to pay attention to anything that isn't about what I can do to feel better. I don't read statistics. I ask my doctor to only tell me bad news on a 'need to know' basis. I don't know if this helps you, but after the first year of shock and trauma at having cancer, I think maybe I am used to this challenge.
That said... if something gets close again, I assume I will feel shock again and get traumatized. Mostly I think about working for peace in my mind so that I can handle the situation.
Thank you for your lovely message carolleigh. I'm feeling much more positive and ready for action! I've been reading lots of positive stories (I can't help myself!) of women with recurrences who have then gone on to have many more years survival so I must stay focused. I hope you're doing well. You sound like you're living well despite regular chemo and as you say all we can do is exercise, eat healthily and try to stay positive. I didn't eat that healthily yesterday as I went for an afternoon cream tea but I thought it was well deserved! Stay strong and keep in touch xx
I was thinking about you and thinking about the resilient tone of your post...feeling like that you have some special inner strength... during this whole saga once I recall telling myself how important it is to totally love yourself... (this isn't about being critical or not) just that feeling of embracing your basic being... then there is 'gratitude,' that spiritual practice. Good luck. Thanks for the nice reply.
I feel strongly that you will make it sticky, look at all the people on stage 4 (like me) and others who are around years later despite their natural fears. You are resilient and seem a strong and caring person which always seems to help. I am sending you a big encouraging hug and hope you can feel all the strength and positive wishes around you from us all.
Thank you shortfriends for your lovely words. I'm surrounded by lovely supportive friends and family which makes a huge difference. Its a lonely path for us to travel but this forum makes it that little bit easier thankfully. I hope you're keeping well and loving life! thanks, sticky3006 xx
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