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Ascites getting me very down - advice
Hi,
My doctor found a large (melon-sized) cyst on the 11/07/06, since then I've had all the usual u/s, CT, ca 125. The CT has shown what appears to be a benign cyst (and from u/s and pelvic exam), very suspicious omentum with thickening, suspicious right ovary, fluid round liver, liver, kidneys and lymph nodes and lungs clear. Ca 125 is 89. I was referred to the regional cancer center last Thursday and had appt last Friday. Very slim chance it isn't cancer, estimated at stage 3, no idea of type but suggested it was one of the rarer sorts, talked about chemo. The full team are reviewing my case tomorrow and I go again on Friday to find out what's what.
Up until this morning I haven't felt physically too bad, vague stomach ache, stabbing pains, pressure etc, was in work until my appointments on Thurs, Fri. Last week I developed quite noticable ascites, stomach size (5 months pregnant size) reduced by about 1/4 on Friday evening. Yesterday it returned and it a lot worse this morning. I'm extremely uncomfortable, stomach is massive (7 month pregnant sized), feel nauseous, heavy and generally unwell. All the doctors have said don't worry too much about it, up until now that has been relatively okay as it's not been that bad and discomfort only lasted a few days. I feel frightened, it's so much worse, I've been crying for the past 2 hours and don't know what to do.
Has anyone else experienced this, what does it mean, how do I make it comfortable, the thread about ascites being the end is upsetting me. I had such a good day overall yesterday, todays come as a shock.
Lisa
My doctor found a large (melon-sized) cyst on the 11/07/06, since then I've had all the usual u/s, CT, ca 125. The CT has shown what appears to be a benign cyst (and from u/s and pelvic exam), very suspicious omentum with thickening, suspicious right ovary, fluid round liver, liver, kidneys and lymph nodes and lungs clear. Ca 125 is 89. I was referred to the regional cancer center last Thursday and had appt last Friday. Very slim chance it isn't cancer, estimated at stage 3, no idea of type but suggested it was one of the rarer sorts, talked about chemo. The full team are reviewing my case tomorrow and I go again on Friday to find out what's what.
Up until this morning I haven't felt physically too bad, vague stomach ache, stabbing pains, pressure etc, was in work until my appointments on Thurs, Fri. Last week I developed quite noticable ascites, stomach size (5 months pregnant size) reduced by about 1/4 on Friday evening. Yesterday it returned and it a lot worse this morning. I'm extremely uncomfortable, stomach is massive (7 month pregnant sized), feel nauseous, heavy and generally unwell. All the doctors have said don't worry too much about it, up until now that has been relatively okay as it's not been that bad and discomfort only lasted a few days. I feel frightened, it's so much worse, I've been crying for the past 2 hours and don't know what to do.
Has anyone else experienced this, what does it mean, how do I make it comfortable, the thread about ascites being the end is upsetting me. I had such a good day overall yesterday, todays come as a shock.
Lisa
Hunny ascites does not mean the end, you poor thing. What some horrible shocks you have had and I am sure you are still trying to digest it all. I can not give much in the way of advice because I am not familiar with your procedure afraid I am only ofay with old surgery/dx. Don't understand estimating the stage, based on what? It always seems odd to me that most have to wait till surgery to even be diagnosed let alone staged and yet there is the odd one who gets staged using a christal ball and pendulem?
Someone will be along shortly to help but in the mean time you are not alone. It is ok to cry in fact it is good to cry, and scream, and if there are any old plates in your cupboards a good old smashing session in the garden does wonders :) (trust me)
Anna x
Someone will be along shortly to help but in the mean time you are not alone. It is ok to cry in fact it is good to cry, and scream, and if there are any old plates in your cupboards a good old smashing session in the garden does wonders :) (trust me)
Anna x
Naturally, all this is weighing heavily on your mind. My advice is to ring the Macmillan nurse and have a chat with her (I take it she gave you her number?). If you can't get through to her then ring the ward. At least they can report this to the team meeting tomorrow.
For helping the discomfort, there are V shaped pillows you can buy which would be excellent for now and post recovery and you can bring it into hospital. In the meantime, as a distraction, catch up on all the old films you ever wanted to see, and make sure there are a couple of weepies in there as well!
Take care,
Ursula
Thanks Anna and Ursula,
I think everythings got on top of me today, I've felt pretty much physically fine up until today and this is a constant visual reminder there's something lurking inside my stomach. I'm also not used to having time on my hands to think too much, which is playing havoc, I don't know what I managed to think about all the time before all this started! And this waiting business is awful, the 95% sensible part of me says don't get worked up until you know for sure it as doesn't change anything, but once the other 5% comes into play it's common sense out the window!
I'm going to go in the bath with my expensive bath stuff, get dolled up and see if I can get my hair done later, I look like a scary, red-eyed, big tummied, mad woman at the moment! I might give the McMillan nurse a ring when I've calmed down a bit and feel rational again.
Thanks for replying, I feel a bit more sane when I'm having to concentrate on something.
Lisa.
I think everythings got on top of me today, I've felt pretty much physically fine up until today and this is a constant visual reminder there's something lurking inside my stomach. I'm also not used to having time on my hands to think too much, which is playing havoc, I don't know what I managed to think about all the time before all this started! And this waiting business is awful, the 95% sensible part of me says don't get worked up until you know for sure it as doesn't change anything, but once the other 5% comes into play it's common sense out the window!
I'm going to go in the bath with my expensive bath stuff, get dolled up and see if I can get my hair done later, I look like a scary, red-eyed, big tummied, mad woman at the moment! I might give the McMillan nurse a ring when I've calmed down a bit and feel rational again.
Thanks for replying, I feel a bit more sane when I'm having to concentrate on something.
Lisa.
Is it definetly the ascites causing the tummy distention and not the cyst? In any event you could ask the doc for some water tablets they are sometimes prescribed to help with acites.
Anna x
Anna x
You need to have nerves of steel to get through the waiting bit.
That reminds me I need expensive bubbly bath - Matey just won't cut it anymore!
Anna and I had surgery on the same day. We both got our hair done before the operation as well (it does make you feel better).
It is easy to forget the awful stress that waiting can bring but Anna let's face it love, we were train wrecks!!LOL
Oh my god yeah lol remember us on the phone the night before and then in the morning ha ha ha ha ha! then I had my mobile hidden in my cabinet and was texting you from hospital! when I think back I dont know how I got through it but for sure I never would have without this forum, you and Linda F
Anna x
Anna x
Your cyst was discovered on the 11th of July. It is now the 1st of August. I'm thinking they better get on with surgery. Demand a date, push or your own sake, just to get the waiting out of the way. You need to be your own advocate in these cases.
L.
L.
Hi,
Just having a bath-break for another cup of tea! Feeling much calmer, actually able to concentrate to read a book, that's why I'm only having a break, I've got to finish it!
Stomachs gone down a little bit, but it's made a lot of difference comfort-wise and I don't feel unwell now.
The ascites showed up on the CT scan. None there on the 18th July on the ultra sound done by consultant at NMGH, showed up on CT report done a week later around liver (cysts in liver but only a 'can't rule out blah blah blah changes' otherwise seemed okay when they did physical examination and all Dr's have said it's okay. It also said absolutely nothing wrong with my lymph nodes)
Stomach got much bigger last wednesday-ish, showed Dr's Thursday and Friday, I didn't know about the fluid round liver at that stage and both sets of doctors have said ascites, but don't worry - yeah right! It looks like ascites, my tummy starts very low down and is quiet hard, and is swollen from my hip bones when it's bad rather than just a bit pot-bellied like usual, I'm a totally different shape to only last week. It is also pretty solid to the touch when swollen, although I can still feel the cyst it's not an easy poke through a bit of fat like before, more like through a space hopper or very thick inflated balloon. They mentioned at NMGH about doing a biopsy, but it wasn't mentioned at St Mary's.
When I saw the team at St Mary's last week I had a long chat with the McMillan Nurse about the doctors mentioning secondaries (which had freaked me out a bit!) and she asked me if I wanted to know the stage that they had estimated it at according to the CT report on the omentum and right ovary, told me they were looking at stage 3, 30% chance of getting to 5 years, but things are improving, more a chronic illness now. Told me about the Chorus trials and said that I may be asked to go on it if I fit the profile. Saying all that at the moment I'm clinging to the hope that the radiographer at NMGH has been too cautious with the CT omentum findings and it's not all as bad as I think it possibly can be.
I hope this all makes sense. Bath's going to be cold now!
Lisa.
Just having a bath-break for another cup of tea! Feeling much calmer, actually able to concentrate to read a book, that's why I'm only having a break, I've got to finish it!
Stomachs gone down a little bit, but it's made a lot of difference comfort-wise and I don't feel unwell now.
The ascites showed up on the CT scan. None there on the 18th July on the ultra sound done by consultant at NMGH, showed up on CT report done a week later around liver (cysts in liver but only a 'can't rule out blah blah blah changes' otherwise seemed okay when they did physical examination and all Dr's have said it's okay. It also said absolutely nothing wrong with my lymph nodes)
Stomach got much bigger last wednesday-ish, showed Dr's Thursday and Friday, I didn't know about the fluid round liver at that stage and both sets of doctors have said ascites, but don't worry - yeah right! It looks like ascites, my tummy starts very low down and is quiet hard, and is swollen from my hip bones when it's bad rather than just a bit pot-bellied like usual, I'm a totally different shape to only last week. It is also pretty solid to the touch when swollen, although I can still feel the cyst it's not an easy poke through a bit of fat like before, more like through a space hopper or very thick inflated balloon. They mentioned at NMGH about doing a biopsy, but it wasn't mentioned at St Mary's.
When I saw the team at St Mary's last week I had a long chat with the McMillan Nurse about the doctors mentioning secondaries (which had freaked me out a bit!) and she asked me if I wanted to know the stage that they had estimated it at according to the CT report on the omentum and right ovary, told me they were looking at stage 3, 30% chance of getting to 5 years, but things are improving, more a chronic illness now. Told me about the Chorus trials and said that I may be asked to go on it if I fit the profile. Saying all that at the moment I'm clinging to the hope that the radiographer at NMGH has been too cautious with the CT omentum findings and it's not all as bad as I think it possibly can be.
I hope this all makes sense. Bath's going to be cold now!
Lisa.
Great to hear your having some good days! I am new to this forum my surgery is in one week. What is ascites, is that the bloating that I have as well that hurts like blank it blank?
Linda,
It's been one thing then another with it all. I went to my GP with a chest infection on the 11th, said I'd had vague stomach pains for ages, could only eat small amounts with 10lb weight loss in 3 weeks, and was very tired; I thought it was bread intolerance. GP found large lump, thought it was a fibroid. 13th I was admitted to hospital after going for an urgent u/s as they couldn't fit me that day, had u/s on 14th. I was expecting a fibroid still and an op in a few weeks. I wanted to go home because I'd literally gone to the hospital from work the previous day, felt 'normal', felt I was taking a bed up needlessly and I sell on ebay and needed to sort stuff out before I got negative feedback! Registrar came to see me at 8pm, told me it was a melon-sized cyst and ca125 raised, it was cancerous and basically said that there was no chance it wasn't (which if I known what I know now I would have questioned more but I hadn't had a clue and he was very definate)could go home for weekend but back Mon at 8am for CT scan and McMillan Nurse appointment! Horrendous weekend followed.
Monday 17th, registrar forgot to book CT. Saw McMillan Nurse, she was wonderful, explained all about ca125 (only 89 not mega high) and said registrar shouldn't have said that or jumped to conclusions without more info, arranged CT scan, changed my consultant to gyn/onc. Saw new consultant, she did another u/s, good chance cyst was benign. Sent home, very happy and floating on air!
Looked up all about ovaries and cysts, and was pretty much convinved it was okay as I'm pre-menopausal, 42, no family history, 99% benign etc.
18th, phone call from hospital. CT scan the on 21st, pre-op 27th, op 4th August. Had scan, stomach was very swollen and uncomfortable compared to earlier but otherwise everything was going well!
27th (last Thursday) - got call from hospital to call in to get CT results before pre-op appt. Told about omentum, ovary,op cancelled for 4th and changed to regional cancer center with appt the following morning, and the rest as above. Consultant very shocked as she was still convinced cyst benign. New Dr's also thinks the actual cyst is benign - but the rest seem to be showing a lot of changes. They are reviewing everthing tomorrow and I find out Friday, have been told I'll be having a total hysterectomy and omenectomy within next 2 weeks, and chemo either before or after if needed.
So really there has only been real urgency from last Thursday. But I'm going to ring the McMillan nurse tomorrow and let her know about my stomach, which has gone down quite a bit and I can do my skirt up now!
Lisa.
It's been one thing then another with it all. I went to my GP with a chest infection on the 11th, said I'd had vague stomach pains for ages, could only eat small amounts with 10lb weight loss in 3 weeks, and was very tired; I thought it was bread intolerance. GP found large lump, thought it was a fibroid. 13th I was admitted to hospital after going for an urgent u/s as they couldn't fit me that day, had u/s on 14th. I was expecting a fibroid still and an op in a few weeks. I wanted to go home because I'd literally gone to the hospital from work the previous day, felt 'normal', felt I was taking a bed up needlessly and I sell on ebay and needed to sort stuff out before I got negative feedback! Registrar came to see me at 8pm, told me it was a melon-sized cyst and ca125 raised, it was cancerous and basically said that there was no chance it wasn't (which if I known what I know now I would have questioned more but I hadn't had a clue and he was very definate)could go home for weekend but back Mon at 8am for CT scan and McMillan Nurse appointment! Horrendous weekend followed.
Monday 17th, registrar forgot to book CT. Saw McMillan Nurse, she was wonderful, explained all about ca125 (only 89 not mega high) and said registrar shouldn't have said that or jumped to conclusions without more info, arranged CT scan, changed my consultant to gyn/onc. Saw new consultant, she did another u/s, good chance cyst was benign. Sent home, very happy and floating on air!
Looked up all about ovaries and cysts, and was pretty much convinved it was okay as I'm pre-menopausal, 42, no family history, 99% benign etc.
18th, phone call from hospital. CT scan the on 21st, pre-op 27th, op 4th August. Had scan, stomach was very swollen and uncomfortable compared to earlier but otherwise everything was going well!
27th (last Thursday) - got call from hospital to call in to get CT results before pre-op appt. Told about omentum, ovary,op cancelled for 4th and changed to regional cancer center with appt the following morning, and the rest as above. Consultant very shocked as she was still convinced cyst benign. New Dr's also thinks the actual cyst is benign - but the rest seem to be showing a lot of changes. They are reviewing everthing tomorrow and I find out Friday, have been told I'll be having a total hysterectomy and omenectomy within next 2 weeks, and chemo either before or after if needed.
So really there has only been real urgency from last Thursday. But I'm going to ring the McMillan nurse tomorrow and let her know about my stomach, which has gone down quite a bit and I can do my skirt up now!
Lisa.
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