Anyone here have ascites at diagnosis and gone into long remission/no recurrence?

[Ella1717]

I had a small amount of ascites at diagnosis (stage 4 HGSOC). It came back much worse a month after debulking surgery, one month into chemo. I had over 1000ml drained three times & then it stopped. I’ve just finished 6 lots of chemo & it’s not come back. I just read a medical article saying that the presence of large amounts of ascites means recurrence is pretty much guaranteed & also an indicator that patient will gradually become chemo resistant & untreatable. Has anyone here who had ascites at diagnosis had a decent remission or no recurrence at all? I’ve responded well to chemo & was starting to feel positive about the future, but has made me very sad & hopeless. I just turned 45.

[Sashay2020]

It breaks my heart to know that you are feeling so dejected, Ella! Forty-five is so young. I was diagnosed last spring at age 69. Sometimes, I feel envious of women your age, because younger, pre-menopausal tend to fare better with OC than women my age. I have not had ascites yet. I research quite a lot. What I do is focus on whatever attributes I have that can help me. I’ve learned that packing on some muscle mass may extend my time in remission, so I dusted off my weight bench and my set of dumbbells 💪🏽. Please don’t let one symptom, ascites, control how you see your future. I’m overweight. I hate it, but it helped me maintain my strength during chemotherapy when I just did not feel like eating. It’s absolutely dreadful that you are facing this at such a young age, but your youth can help you fight this cancer. I do wish you well, Ella and hope that you can find ways to lift your spirits. Best wishes from Louisiana,

Sashay

[Ella1717 in reply to Sashay2020]

Thank you Sashay. It sounds like you have a very positive attitude which I think is hugely important. I wish you all the best!!

[Lizzieanne]

I was diagnosed in 2002 with stage 2c OC I had ascites. I had chemo then nothing. I lived my life for 18 years when i have had my first recurrence diagnosed in May 2020 this time I had a pleural effusion. Had more chemo and am on Rucarapib.

[vipervictoria]

Hi Ella1717

I was just one grade below you in 2009, state 3c, and due to a lack of removal of lymph nodes I may well have been stage 4 - nobody knows. I switched oncologists as my chemo ended, I think that was what saved me. I live deep in the countryside, and the local hospital is not known for treating ovarian cancer well - at least, it wasn't then.

My suggestion to you is first of all, having done what you have done so many times, is that one article will not predict what's going to happen to you. No article will predict what is going to happen to you, because you are an individual, and articles relate to studies done over many women over a period of time - sometimes years.

I know of many women who have survived grade 4 - some of whom have now survived for 30 or more years. I still see my oncologist twice a year, simply for reassurance, although under NHS rules I am not supposed to do that. I would have been discharged by the NHS 6 years ago.

When I was diagnosed I was a bit older than you, not much, but a few years. At that time I was incredibly lucky because via my husband's job I have private health insurance. He sort of dragged me to Harley Street, we met Dr Hope there, and there I have stayed ever since. [Edited by moderator]

Now, 11 years later, women in the UK don't have to do that, because under NHS rules you have the right to ask for a second opinion at a major teaching hospital when you have a diagnosis of late stage ovarian cancer.

There are many new treatments available now that were simply unknown when I got OC, such as PARP inhibitors, new types of chemo and combinations of chemo, second debulking surgery, etc.. One of the leading surgeons in the world is right here in London, she is doing ground breaking work, her name is Miss Christina Fotopolou (I hope I've spelt that properly).

I hope that gives you a little hope, along with my own paradoxical survival. As Dr H and I, along with my husband, have discussed many times over the years, my initial diagnosis and treatment was so poor it was negligent. That was because I'd used my PHI to see a local radiologist, who somehow managed to fail to diagnose ovarian cancer on 2 MRI scans. Private surgery was then cancelled, and I wound up getting surgery on the NHS, because my husband, a technologist, preferred me to be at the local hospital rather than elsewhere. We had massive arguments about that - I wanted to go to Edinburgh or Durham, both of which are a long drive away, but in the end, I had it at the local hospital.

All that is over now. I am alive. I had ascites during surgery, and then after surgery I had a few bumps. E.g. I managed to get heat-stroke in my own back garden, and that brought on symptoms of a recurrence, including a type of non malignant ascites. Chemo itself can bring on ascites, Dr H has told me - that is a sign that it is working against the malignant cells, literally washing them away. But there are now options to deal with that. My final suggestion is that you do what I did - if you don't trust your treating team, they won't mind at all if you ask for a second opinion. It's what any doctor would do in the same position.

Good luck & blessings. I hope we can meet up at some stage now that lock down is lifting.

VV xxx

[Horsesrock in reply to vipervictoria]

So great to hear your story VV. It gives a lot of hope!

[Ella1717 in reply to vipervictoria]

Thank you so much! Really helpful & sensible advice. It’s really helped me feel less panicky. Very much appreciated.

[citrine]

Hi Ella, I had gross ascites at the time of diagnosis in 2011 when I was 55 years old. I was admitted to hospital for drainage and had a biopsy at the same time which confirmed stage 4 OC. I had 3 cycles of chemo followed by surgery and then another 3 cycles. Treatment finished in January 2012 and I haven’t had a recurrence. I was lucky to have a consultant who told me that although no one could promise me that the cancer wouldn’t come back I should try and live my life on the assumption that it wouldn’t. This was enormously helpful to me and when I found myself worrying about the future I would use the mantra “doctor’s orders” and do some replacement activity. I know this wouldn’t work for everyone, we are all different but I think it gave me “permission to hope” in the face of the articles like the one you read.

Wishing you the very best of luck

Mary x

[Stuee01 in reply to citrine]

Hi Mary,

Just wanted to thank you for your posts. My partner (37 years old) is going through Stage 3C OC, diagnosed in Aug 2020 and your posts have given me a lot of hope. Thank you so much for contributing your story to this site.

xo

-Stephanie

[citrine in reply to Stuee01]

Sending all good wishes to you and your partner Stephanie ❤️

[Ella1717 in reply to citrine]

Thank you Mary! Again, very sober & helpful words. I’m very grateful.

[Di16]

I had ascites at diagnosis & pleural effusion. I didn't have a long remission, just 2 years, but my surgeon had been hopeful for longer. I've had no more ascites though. Di

[TarbonNZ]

Hi Ella. I had ascites at diagnosis. Had 4 litres drained once, with what they estimated a couple of litres left. This was dealt with by chemo. I am just about to start 5th line treatment, and I have never (hope I am not jinxjng myself now), had ascites since. Hope this helps, Therese.

[Horsesrock]

Hi Ella, Im in the early stages of treatment of stage 4 HGSOC. Im 54yo and slim build. I had 6 litres taken my first drain which was days before my first chemo. A week after I had another 4 litres drained. Ascites is the worst and so the drain was a huge relief and it hasn't come back (although my CH125 is now up at 5000! which apparently is because of the drain). I didn't know about the link to reoccurrence and will now check it out with my oncologist. But as someone previously said this link may not be fully researched and proven. I wish you all the best.

[Luckyducky144]

Hi Ella, I had terrible ascites at diagnosis. Two drains, one was about 4 liters, the other was 7. Honestly, ascites was probably the most painful part of my whole experience, outside of recovering from surgery. I looked about six months pregnant, and I could feel the water shifting inside of me when I moved. I was diagnosed stage 3c in October 2019 at age 34. I’ve now been in remission for a year and the ascites never came back after I started chemo. I remember at the beginning having to wait a weekend before a drain, I was terrified that the cancer was just spreading everywhere, but my surgeon reassured me. Take everything you read with a grain of salt—you aren’t a statistic or just a number, everyone is different and responds differently to treatment. Try to stay present in remission (I’m finding it so hard, but it helps to stay present and live in joy!) Sending you love.

[Ella1717 in reply to Luckyducky144]

Thank you so much. Yes, staying present is key. I’m getting there but I have blips like last night. All my best to you x

[Pianoplayer731021]

Hi, I had a small amount at diagnosis in Oct. 2019. I don’t seem to have any more at this time. Hoping you are doing ok. Donna