ascites

[Be-Positive]

Hi there,

I am just wanting some information and advise please.

My mum is advance stage 3/4 OC and had her hystorectomy 4-5 weeks ago now, she had chemo on her 3 week after surgery and was fine for 5 days afterwards then started to complain of pains in her tummy.

We took her to a&e and her stomach was massively swollen and she was in agony.

It was a mixture of kidney infection, constipation and ascites.

Unfortunately she is still in hospital 5 days later and they are draining the fluid. I just wanted to know more about what ascites is and does it go away?

Mum had 52 lymph nodes removed when she had her operation and they said that could be part of the cause although they do not know for sure. They have taken some samples to test and find out.

Is ascites something that can happen temporarily? I am wondering if it's part of the healing after her op or whether or not there is a more serious underlying issue I am being naive to. Please anyone give me your stories or advise.

Mums op was really successful, they had to leave one lymph node that looked to be affected with disease by her pancreas as was too risking to take it, although they expect the next 3 chemo to get rid of that!

Look forward to hearing from you all.

[TinaB1]

Hello there .. I can see that this is a worrying time for you and your family.

Ascites can build up for a number of reasons not just in cancer cases. I haven't heard of all lymph nodes except one being taken away so I've learned something.

Fluid is produced by the peritoneum in the normal way of things because it acts as a lubricant to help the abdominal organs move around in their area freely.

Ovarian cancer can increase the amount of fluid produced. In addition, it doesn't always drain as well as it should. In this way, fluid builds up making the abdomen extended and uncomfortable.

One of the aims of chemo, is to reduce activity so fluid doesn't build up. Your Mum will feel better after the fluid is drained. Ascites can cause constipation too although constipation often has to be managed anyway in cases of Ovarian. It may be a good idea for your Mum to mention this to the ward doctor to see what can be done and then to see her GP once she is discharged.

Hopefully, things will settle down once your Mum's treatment gets fully underway.

Sending all good wishes to you and your family. Xxx

[Be-Positive in reply to TinaB1]

Hi Tina,

Thank you for replying I appreciate it. Poor mum has really seen the wars, I don't think she has gone more than 2 weeks without having to go back to hospital because of one thing or another.

So should the ascites go once her treatment is over? Mum has 2 more chemo left then that should be the main of her treatment over. I just wondered if it was going to end up being a long term thing, we have a holiday booked 12th of September which we booked for it to be a celebration of her getting through the treatment, although I am now worried this ascites could affect us being able to go.

Just for your interest around the Lymph Nodes, mum also had one which enlarged in her neck, they were going to remove this but also said it was too risky because of the vessels etc. that surround it. They eventually did a biopsy and it wasn't malignant! Out of the 52 nodes removes only 17 were cancerous, I think some just enlarge to try and fight whatever is happening.

xxxxxxxxxx

[thesilent1]

I had a lot of ascities prior to my op, it went when they opened me. However a friend had her chemo prior to her op and for her first 2 sessions of chemo she had to be drained prior to her chemo being administered. After her second session she no longer required draining. Hopefully your mum's will settle down soon, it just takes time. With regard to her constipation, the anti sickness drugs can make you constpated but I found I needed them. Your mum should take something to help soften her stools, drink plenty of water and I have found having some pru nes with my weetabix helps too.

Take care and best wishes to you and your mum. Ann xo

[Be-Positive in reply to thesilent1]

Hi Ann,

Did yours cause you acute pain when you has acsites? Hopefully mums will go away soon and once is drained will go away.

Her tummy is ever so swollen even after they have drained it. I was stroking her back yesterday and could feel her hips were also really swollen, really strange what it does.

xxxxxxx

[thesilent1 in reply to Be-Positive]

Hi, I don't remember the ascites being painful however I did experience pain which started a couple of days after chemo and lasted for about 5/6 days. Also you mentioned end hour mum being constipated. I had extreme pin when I suffered from a partially blocked bowel which I ended up being hospitalised for almost a week with. Its important she gets her bowels moving regularly. xo

[Hawk86]

Ascites itself is a "side effect" of certain conditions. If you Google it you'll see that it can occur in liver disease as well as cancer. Your question is one that can only really be answered by your doctor, as they are the only ones that will be able to determine the cause of the ascites. But I can say that ascites isn't "permanent" as it is just fluid build up in the peritoneal cavity and can be treated with certain diuretics or drainage. However if there is an underlying cause for the ascites then it may reoccur. This is why the doctor is the only one who can answer this question. I wouldn't be worried about the actual ascites as the fluid build up isn't dangerous as such, apart from being an infection risk. Ascites also isn't usually painful - patients with liver disease can live years with ascites that doesn't cause pain (although certainly some discomfort). But hopefully once they find out the cause, the ascites will be treatable. I really hope everything goes well for your mum. I am in a similar situation with my own mother so I know how worrying it is. Best of luck xx

[Be-Positive in reply to Hawk86]

Thank you for replying, I just read your post about your mum. It sounds like we are in pretty similar situations. Can I ask how old you are? My mum is 58 and I am 24, we found out in March that mum had this so I imagine you must of had this news around the same time? I hope your mum is doing ok, it is nice in a really messed up way speaking to other people in the same kind of situation. xxx

[Hawk86 in reply to Be-Positive]

I'm 27 so yes we are similar ages!I haven't had time to go back and reply to everyone's comments on my post yet, they were all really helpful and nice. My mum has just started back on chemo now so we are back to the unknown again :/ even though it was March, it still all feels like a bad dream. My mum is such a fit person, ran marathons and climbed mountains etc. I just really hope she will be able to do it again! We are looking into adding some alternative medicines onto her treatment (as long as it's safe with the chemo etc). It would be nice to stay in touch with you. I'm based in Scotland!

[Be-Positive in reply to Hawk86]

Yes definitely that would be nice. Is your mum going on to Avastin? Mum is supposed to have that added in on her next chemo. Take care and best wishes to you and your mum xxxx

[Lost4Words]

Hi

Hope your mum is starting to feel more comfortable. I've found the Ascites can come and go during treatment but from personal experience it could be the constipation that is causing the abdominal pain. I've suffered terribly with it all the way through every treatment and the pain can be absolutely excruciating. Chemo seems to affect the bodies absorption of fluids and you can dehydrate quite quickly so it's really important to drink plenty of water and avoid caffeine. I've also found Movicol helps to keep the motions soft without causing diarrhea, it's all about finding a balance for your body and may take trying different things to find what works for her.

Hope she's home soon and enjoy your holiday.

L4W

[Be-Positive in reply to Lost4Words]

Hi L4W,

Yes this does seem to be part of the reason mum gets in so much pain! She either has upset tummy or completely blocked, hopefully after all the meds have been stopped things will get back to normal.

Mum should be home today hopefully - she is going stir crazy in hospital as she has been there 8 days now

xxxx

[IrishMollyO]

I am just talking from my own experience but I am not a doctor and everyone is different so your mothers doctors will be the key people .to test why your mother suddenly developed ascites. In my case it was what alerted a vigilant GP to refer me for further tests which confirmed Primary Peritoneal Cancer a rarer form of OC. I was drained before my 6 months of chemo and that was 4 years ago. Thank God it has not returned yet. I did not have at operation but from my very limited medical knowledge removal of lymph nodes can also cause fluid build up as they are your drainage system . As I read in your post your mothers doctors are looking into all of this. I also wanted you to know that the draining of the fluid was not painful and it really eased the pain and discomfort. I do wish your mother all the best for a good outcome and she is lucky to have a loving family watching out for her. The other thing I meant to say that a swollen tummy can be one of the first signs of OC or PPC which is caused by ascites build up. You didn't say if that was one of your mothers first signs pre diagnosis.

I hope I have been of some help and haven't caused more confusion. Just keep asking the doctors questions . God bless you and your mum

T

[Be-Positive in reply to IrishMollyO]

Hello T,

Mum didn't have any fluid pre-diagnosis and hasn't had any until after the operation - doctors have said it could be from the Lymphatic system because they removed so many and it is healing and they cause fluid themselves. They also did a test of the fluid and it was heavily infected which they think is all because of her kidney infection. We are waiting to hear back next Tuesday for the result if any cancer cells were present, although a mcmillian nurse said to me she wouldn't be surprised either way as we know mum has a tiny bit of disease left and the next 2 chemo should get rid of that.

Thank you for replying xxx

[Hidden]

Hi,

Sorry to hear your mum is going through such a bad time. I was diagnosed early June with advanced OC ( two chemos complete and next one this Thursday) and one of the major problems I had was fecal impactation - my bowels hadn't moved in 10 days and I was doubled up with pains in my stomach. I was given an enema but my bowels still didn't function properly for a few weeks. I was told by hospital take 4/6 Movical a day, Duphalac oral solution 3 times a day, plus one Dulcolax at night. It seems a lot, but it has worked and my bowels are back to normal.

Hope this helps

Juliet

[Be-Positive in reply to Hidden]

Hi Juliet,

That does sound awfully similar to my mum, she has had such trouble with her bowels every since she was diagnosed. It must get irritated by the cancer and after the op because it has been touched. The thing is she has one extreme of upset tummy and not making it to the loo and then the next hasnt been in days. I hope once she is off all the meds & chemo it will get back to normal

I really hope you a speedy treatment process and wish you all the best xxxx

[Flamingobeef18]

Hi the two extremes with bowel movements sounds very familiar. I was diagnosed in March last year and have tried different regimes but it still all seems pot luck. I have found that if I eat a sensible whole food diet with regular mealtimes that it is better. Even then I can get caught short which is a bit of a nightmare when one is out. My oncologist suggested Imodium if I doing something like travelling. I will be trying this when we go away next month.

My primary symptom at diagnosis was ascites. My stomach swelled over a couple of weeks and was enormous. My GPs were not worried and thought it was gastroenteritis! By the time my daughter forced me to A&E I was having serious difficulty breathing, struggling to walk and unable to eat or drink. A drain was inserted and 8 litres latter I felt so much better.

The drain was put in under local anaesthetic and I would suggest your mum have someone with her. It is not a pleasant process and you can feel a bit like a lump of meat as staff chat amongst themselves during the procedure! Also ask how quickly they will drain the fluid. It should be done very gradually with the amount being recorded. Too much too quickly can send you into shock which is not a good experience. My final tip would be to ensure your mother is well topped up with pain killers before the drain is removed. The drain should not be kept in for more than three days. I would ask after 48hrs what the plan is for removal. I was woken at 11pm to have a drain removed and there was "no time" for any painkillers. I will not be doing that again!

Sorry if this sounds negative but these are the things I wish I had known.

All the very best Julia