Mum just diagnosed

[Dijkstra7]

my mum was diagnosed yesterday , only through a blood test , still awaiting a hospital appointment, but she has been poorly for a few months now, she has now got to the point she doesn’t want to eat and is losing a lot of weight, she is very bloated and in constant discomfort, her mum died of ovarian cancer when my mum was a baby. Am I right to think that with her symptoms so severe she is probably going to have advanced ovarian cancer probably stage 4 ? Any advice would be appreciated. Thank you

[Lovedogs41]

Hi

Sorry to hear about your mum.It is such a shock for everyone,but it can be treated.

It sounds like your mum has ascites in her tummy causing the bloating and inability to eat.It is very uncomfortable and painful.This can be drained at the hospital and makes you feel a lot more comfortable.Please be persistent with the NHS in getting seen asap.I actually ended up taking myself to a and e as I felt so awful and was then admitted.

Your mum may not be stage 4,it is staged at 4 if it has spread to the lungs or liver.

Xx

[Dijkstra7 in reply to Lovedogs41]

thank you for your reply it is very much appreciated xx do you think i should try and get her to A and E as they have said it could be 2 weeks before she gets seen at the hospital!

[Lovedogs41 in reply to Dijkstra7]

If she is in pain and uncomfortable and can’t eat then I would say definitely yes,it will only get worse unfortunately.I looked 6 mths pregnant and I couldn’t eat,had to sleep sat up it’s awful.

[Dijkstra7 in reply to Lovedogs41]

Thank you i will try and get her to A&E xx

[bamboo89 in reply to Lovedogs41]

Just to say Stage 4 doesn't necessarily mean its spread to the lungs or liver - I'm Stage 4b, have been for five years, but its not in any of my vital organs nor the lungs.

[Pianoplayer731021 in reply to Lovedogs41]

I was diagnosed stage 4, because it spread to my omentum, intestines and abdominal wall. Liver and lungs were ok. Donna xx

[Trickysite]

don’t rush to think she is stage 4. And even stage 4 like me, can live a good quality of life- just returned from cruise! But do take mum to A and E as she is not eating. Hope that helps. Emma x

[Dijkstra7 in reply to Trickysite]

Thank you Emma for your reply, so good to hear you are having a good quality of life and enjoying trips away, that has really given me some hope, Thank you 🙏. I am trying to get her to A&E but she is being very stubborn!

[mrstadpole]

I was much the same as your mum,bloated ,unable to eat and in a lot of pain.I went to the GP and she organised a scan for me but that was 7 weeks away.She said she didn't know the cause!!I eventually went to A& E was diagnosed within 2 hours and admitted.I had 6 litres of fluid removed and felt so much better. That as 5 years ago. Hope it can be sorted for your mum. xx

[Dijkstra7 in reply to mrstadpole]

Thank you for your reply, that has really given me hope xx I am hoping to get her to A& E but she is very stubborn! But hopefully we can get this sorted soon. Wishing you all the best xx

[mrstadpole in reply to Dijkstra7]

Thank you xx

[Loorunner]

I am so sorry to hear your Mum is so poorly. I would definitely advise trying to get ascites fluid, which can be the cause of the bloating, drained- they drained over 7litres from me and the relief was tremendous.

I am stage 4 as it has spread into some lymph nodes outside the abdomen. But if it- do not despair! There are more and more treatments out there. A year on from diagnosis I'm still working, walk/running and enjoying life. All the best to you all

[Dijkstra7 in reply to Loorunner]

Wow , thank you so much for your reply, that has really re set my negative thoughts on all of this and given me some hope 🙏 x . Wishing you all the best and i am sure i will be on here often asking for advice xx

[NewtonEmma1900]

I went to GP quite late, I didn’t feel noticeably unwell until September 2021 when my tummy started swelling. All relevant tests were requested urgently, however the wait was 3 weeks so I went for a private scan and ultrasound as I was by then in a lot of pain. The Doctor who did the ultrasound sent me straight to A and E where I was admitted diagnosed within 6 hours and the ascites fluid was drained. I was diagnosed with ovarian cancer and stayed in hospital 2 days. Once on the pathway the final diagnosis was Stage 3c ovarian/peritoneal cancer. I would suggest going to A and E because even after the initial drain the ascites came back whilst I was waiting for 1st chemotherapy. Send good wishes, all is not lost I am 70 and even though on 2nd line chemo am making the most of life. 🙏💕

[Dijkstra7 in reply to NewtonEmma1900]

Thank you for your reply, its so good to hear from someone with such a positive outlook, my mum is 72, she had breast cancer 7 years ago and we got through that so hopefully we will again. I will try and get her to A&E but she is very stubborn , but i think it is the best answer to relieve her pain , wishing you well xx

[Realistic]

So sorry about your Mum but its good advise on here take her to A& E if shes very unwell. Stay positive . Glad she's got you. Both take care love to you both. SheilaFxxx

[Dijkstra7 in reply to Realistic]

Thank you so much for your reply Shelia, its much appreciated xx

[Donnie21]

I agree, if she has significant ascites and isn’t eating she needs to be drained asap which will hopefully relieve her discomfort and allow her to eat. She needs her strength. Try Ensure drinks as a means of getting some calories and nutrition in. Good luck and keep advocating for your mum.

[Dijkstra7 in reply to Donnie21]

thank you for your reply, i will look onto the ensure drinks for her xx

[Jayred]

Hi

You are such a good daughter. Keep persisting with your mum to get her to hospital. Better to go to A and E while she is still in control. There is every possibility she could be rushed into hospital over Christmas which is not good. I am stage 3/4 ovarian cancer diagnosed in 2020. I am 81 and doing well so if she gets treatment quickly anything is possible. Wishing you both well. X

[Nov5]

Hi, really sorry to hear what you and your mum are going through. I agree with all the previous replies regarding attending A&E. I was in a similar situation last November when I initially felt I had UTI, then my abdomen distended more than 8 inches within 48hours. My GP requested urgent bloods and scan, but after a further 5 days I felt so unwell I attended A&E. Although there a lot of going back and forth over next 2 days I was then diagnosed with stage 3c Ovarian cancer with peritoneal metastisis. This is where the ovarian cancer cells settle within the peritoneal cavity which results in a build up of fluid called ascites. The ascites can mess up your blood chemistry and your mum may need to have intravenous fluids to correct this in addition to having a drain inserted to relieve the ascites.

Your mum is understandably feeling anxious and this may be contributing to her being stubborn, especially as her mum also had ovarian cancer. Try and persuade her attend A&E rather than wait for the investigations the GP has requested. At least they can give her some pain relief and anti-nausea medication in addition to giving her IV fluids whilst waiting for a drain to be arranged.

Once I started chemo the ascites never returned. I've now finished the chemo and had surgery. I am BRCA1, my mum and grandmother also had ovarian cancer and my mum's 2 sisters also had breast cancer. This is important for you as a family to be aware of . If your mum tests positive for the BRCA gene then your family will be referred to the genetics service for testing too. It is totally your own decision whether you want to be tested, but if you and your family are aware of the gene then you can having regular screening. Looking back I wished I had known that my mum and grandmother had ovarian cancer as I would have taken action to have had my uterus, fallopian tubes and ovaries removed once my family was complete. Unfortunately I did not know the exact history as we'd always been told it was stomach or bowel cancer. I guess families were less aware of medical terminology in the 1940's /50'. Particularly when it came to women's reproductive organs. I hope I haven't scared you with this info, but knowledge is important and gives you the ability to ask appropriate questions. They don't always tell you everything!!

I am now on maintenance treatment which specifically targets the BRCA gene. I have regular blood tests and scans.

My thoughts are with you and your mum and I hope you get some answers soon. The not knowing is the worse part.

[monkeytwo]

Morning, take her to A&E I wish I had gone. I was supposed to be seen for my initial ultrasound within three weeks it took them nine and even after that it wasn't particularly swift. By the time I'd had my operation and they had the results it was at 3a and I'm 44. Don't jump to conclusions about the stage and the other ladies who have replied to you are right there are several treatments out there now. I hope all works out well and love to you both but please don't delay. xx

[SopSinger]

I'd definitely take her to A&E. As some of the other ladies say, they can arrange for ascites drainage, help with both dehydration and pain (treating those symptoms will make her feel much better in herself) and possibly even escalate the referral, though with Christmas imminent, that's not as likely as it might be at a different time of year. Emphasise to her that if nothing else they can make her feel more comfortable. And it may or may not be stage 4, but there are many ladies living long term after a stage 4 diagnosis, some with recurrence, some without, so it is NOT a death sentence. Sending hugs to you both.

[delia2]

Just to send you a hug. Technically ovarian cancer can only be diagnosed and staged through pathology and if the drain the fluid they can use the cells in it for pathology. It sounds like she may have a brace or related mutation. She should be tested for that because it affects certain treatments. Try telling her that if she won’t go to A and E you’ll be miserable. She may do it for your sake. I hope you can persuade her. Xx

[lesleysage]

The only thing I can add to all the love, guidance and warmth form everyone else is that many of us have found the Ovacome helpline both very knowledgeable and very supportive so keep them in mind 0800 008 7054 and their website have information sheets and excellent webinars plus support groups you/your Mum could join in on occasions if it helps. Warm wishes, L x

[BridgeySWMummy]

Hi, I’ve just joined and found your post. My mum is currently in hospital having her ascites drained. It is her third time and she knows it makes her feel a lot better, we’re still awaiting g a chemo plan which is stressing me out and upsetting us. I think our news today is it has gone beyond her ovary and abdomen area. My mum is 74 and I’m a matter of months this swelling in her tummy, her discomfort in bladder and bowel have all been upsetting her - might be worth asking your mum if she is struggling with the same. The first time my mum was drained it was all done in one day - so doesn’t have to mean a stay.

Thanks for your post because reading these comments have reassured me when I was very upset on looking up the forum. Good luck to your family.