Recurrence and ascites

sarahb74
sarahb74 Member Posts: 81 Member
edited March 2014 in Ovarian Cancer #1
I’m hoping somebody can give me some advice about a possible recurrence.

My treatment for stage iv ovca ended nearly 12 months ago and I’d been doing quite well until about 6 weeks ago when my abdomen started swelling. I mentioned it to the oncologist at my last check up which was about a month ago and she just seemed to shrug it off, and after the usual examination she gave me the all clear. About 8-10 days ago the swelling started to get worse and I’m beginning to look heavily pregnant which I find really embarrassing (I’m 60!). I’m also getting full very quickly and can only eat tiny amounts at a time. I’ve had ascites twice so far and assume I have it again and although it’s nowhere near as bad yet as the first 2 times it’s still very uncomfortable. My next appointment with the oncologist isn’t until 10th February

The problem is I live in the UK where we are pretty much snow bound. Even if I can leave the house our local hospital is only dealing with emergencies and most of the oncologists won’t be there over the holiday period. Can somebody tell me if there is anything I can do to alleviate the discomfort until I can get to see her again? Also does ascites always mean a recurrence? I always knew it would come back but I was just soooo hoping I would be in remission at least until after the 1st Jan when I had my last chemo!

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
    Hiya I too live in the UK so
    Hiya I too live in the UK so I know the systems. I am sorry you are suffering with asites, I can empathise because I have just had a chest drain because I get fluid build up around my lungs as I am stage 4 PPC.

    My advise to you is to get in touch with your Oncologist - by phone and stress to her/him how uncomfortable you are feeling and how your quality of life is very bad. I would lay it on a bit thick (maybe you won't need to!) It is really important you get this sorted before Christmas so kick up a bit of a fuss. I really don't think you should wait until Feb 10th when you have this worry.

    I'm afraid I am one of those people who phone my "chemo nurses" whenever I am worried about something (I knew my CA125 had gone up so I phoned them up and they made me an appointment for the next week) I also phone them when my sickness tables don't work and they prescribe me better ones. What I am trying to say to you is PLEASE be in touch with your oncologist team and DON'T suffer - you don't need to suffer when there are people to help you.


    Take care Tina xx

    PS Everytime I phone the chemo nurse she ALWAYS helps me.
  • Mwee
    Mwee Member Posts: 1,338
    #3
    Tina Brown said:

    Hiya I too live in the UK so
    Hiya I too live in the UK so I know the systems. I am sorry you are suffering with asites, I can empathise because I have just had a chest drain because I get fluid build up around my lungs as I am stage 4 PPC.

    My advise to you is to get in touch with your Oncologist - by phone and stress to her/him how uncomfortable you are feeling and how your quality of life is very bad. I would lay it on a bit thick (maybe you won't need to!) It is really important you get this sorted before Christmas so kick up a bit of a fuss. I really don't think you should wait until Feb 10th when you have this worry.

    I'm afraid I am one of those people who phone my "chemo nurses" whenever I am worried about something (I knew my CA125 had gone up so I phoned them up and they made me an appointment for the next week) I also phone them when my sickness tables don't work and they prescribe me better ones. What I am trying to say to you is PLEASE be in touch with your oncologist team and DON'T suffer - you don't need to suffer when there are people to help you.


    Take care Tina xx

    PS Everytime I phone the chemo nurse she ALWAYS helps me.

    great thought, Tina
    My chemo nurse is always my first line to my doctor.
    Maria
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #4
    Mwee said:

    great thought, Tina
    My chemo nurse is always my first line to my doctor.
    Maria

    call the hospital!!
    mum has ascites to start with and we were told to call the hospital as soon as it was starting to feel uncomfortable and they would drain it for her that day.We also live in the uk. Don't wait, do it now, so if they cant do it tomorrow they will be able to do it the next day before it does become unbearable.Take care and make that call xxx
    P.s where abouts in the uk are you?
  • srwruns
    srwruns Member Posts: 343
    #5
    Mum2bellaandwilliam said:

    call the hospital!!
    mum has ascites to start with and we were told to call the hospital as soon as it was starting to feel uncomfortable and they would drain it for her that day.We also live in the uk. Don't wait, do it now, so if they cant do it tomorrow they will be able to do it the next day before it does become unbearable.Take care and make that call xxx
    P.s where abouts in the uk are you?

    I'm not in the UK so I don't
    I'm not in the UK so I don't know the system (thank goodness for those folks that are and are in know about your system) but waiting so long seems just wrong and medically not correct. Best of luck! Thanks for you UKers for your insights about your system for fellow UKers. Susan
  • sarahb74
    sarahb74 Member Posts: 81 Member
    #6
    srwruns said:

    I'm not in the UK so I don't
    I'm not in the UK so I don't know the system (thank goodness for those folks that are and are in know about your system) but waiting so long seems just wrong and medically not correct. Best of luck! Thanks for you UKers for your insights about your system for fellow UKers. Susan

    Thank you
    Thank you everyone for your replies. I'll phone them first thing tomorrow morning and pray that I can get something done before Christmas. I don't know why but these things always happen to me either at weekends or holidays!
  • lindachris
    lindachris Member Posts: 173
    #7
    Ascites
    My wife dealt with ascites on her second recurrence. It was quite profound. We had it drained at least two times before the actual cancer diagnosis. That sounds weird but it's too long a story to tell here. At any rate the last drainage for her was my call because she looked me in the eye and told me it was serious. I took her to the local hospital emergency room and to this day I'm glad I did. Sometimes you have to push the issue for your own best interests.
  • sarahb74
    sarahb74 Member Posts: 81 Member
    #8
    lindachris said:

    Ascites
    My wife dealt with ascites on her second recurrence. It was quite profound. We had it drained at least two times before the actual cancer diagnosis. That sounds weird but it's too long a story to tell here. At any rate the last drainage for her was my call because she looked me in the eye and told me it was serious. I took her to the local hospital emergency room and to this day I'm glad I did. Sometimes you have to push the issue for your own best interests.

    home again
    I went to the hospital yesterday and doctor 1 said she would drain me and then prescribe some diuretics to stop it from coming back. She went away and doctor 2 arrived, examined me again and put the drain in. She managed to drain off just 350ml fluid. I think she said she’d just hit a pocket so I assume she put the needle in the wrong place because after the first gush nothing else came out (the last time I had it done I lost several litres in the first hour or two.) Also no diuretics as doctor 2 said they wouldn’t work.

    The 350ml she drew off did very little to ease the pressure so I’m back home again in the same state I was in before I went. She said if I can’t cope with it or it get’s worse I can go back after Christmas, which in UK means 29th Dec. Otherwise she’ll see me on 10th Feb.

    They also both said when I asked them (they absolutely never tell me anything voluntarily) that it was almost definitely a recurrence but didn’t say what would happen next. I had my bloods taken, but no scan. So, I have to spend the next week with an embarrassingly huge belly, no appetite and worried sick about what’s going to happen next. I’m so sorry for the moan, especially at this time of the year, but my son is coming in a few days and I really wanted this year to be special.
  • zinaida
    zinaida Member Posts: 221
    #9
    sarahb74 said:

    home again
    I went to the hospital yesterday and doctor 1 said she would drain me and then prescribe some diuretics to stop it from coming back. She went away and doctor 2 arrived, examined me again and put the drain in. She managed to drain off just 350ml fluid. I think she said she’d just hit a pocket so I assume she put the needle in the wrong place because after the first gush nothing else came out (the last time I had it done I lost several litres in the first hour or two.) Also no diuretics as doctor 2 said they wouldn’t work.

    The 350ml she drew off did very little to ease the pressure so I’m back home again in the same state I was in before I went. She said if I can’t cope with it or it get’s worse I can go back after Christmas, which in UK means 29th Dec. Otherwise she’ll see me on 10th Feb.

    They also both said when I asked them (they absolutely never tell me anything voluntarily) that it was almost definitely a recurrence but didn’t say what would happen next. I had my bloods taken, but no scan. So, I have to spend the next week with an embarrassingly huge belly, no appetite and worried sick about what’s going to happen next. I’m so sorry for the moan, especially at this time of the year, but my son is coming in a few days and I really wanted this year to be special.

    Dear Sarah! Your son will
    Dear Sarah! Your son will come and it is will be special.You can make it special, no matter what.Take pills (pain pill or anxiety) ,if you have to make your self feel good to have good time with your son. (((HUGS)), love Zina.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #10
    sarahb74 said:

    home again
    I went to the hospital yesterday and doctor 1 said she would drain me and then prescribe some diuretics to stop it from coming back. She went away and doctor 2 arrived, examined me again and put the drain in. She managed to drain off just 350ml fluid. I think she said she’d just hit a pocket so I assume she put the needle in the wrong place because after the first gush nothing else came out (the last time I had it done I lost several litres in the first hour or two.) Also no diuretics as doctor 2 said they wouldn’t work.

    The 350ml she drew off did very little to ease the pressure so I’m back home again in the same state I was in before I went. She said if I can’t cope with it or it get’s worse I can go back after Christmas, which in UK means 29th Dec. Otherwise she’ll see me on 10th Feb.

    They also both said when I asked them (they absolutely never tell me anything voluntarily) that it was almost definitely a recurrence but didn’t say what would happen next. I had my bloods taken, but no scan. So, I have to spend the next week with an embarrassingly huge belly, no appetite and worried sick about what’s going to happen next. I’m so sorry for the moan, especially at this time of the year, but my son is coming in a few days and I really wanted this year to be special.

    Dear Sarah
    I feel so angry and sad for you when I read your recent post. The doctors should NOT have let you come home until ALL of the ascites had been drained off. And diuretics ???????????????? for a cancer related side effect?????????????? I think I would have laughed at the doctor who suggested that. I am sorry and I don't mean to belittle your experience but I think your doctors could've done more for you.

    I do hope you have a nice christmas with your family and if it were me I would go back in after christmas and demand they drain the ascites properly because you don't need to suffer today when there is a solution to your problem.

    Love Tina xx
  • zinaida
    zinaida Member Posts: 221
    #11
    sarahb74 said:

    home again
    I went to the hospital yesterday and doctor 1 said she would drain me and then prescribe some diuretics to stop it from coming back. She went away and doctor 2 arrived, examined me again and put the drain in. She managed to drain off just 350ml fluid. I think she said she’d just hit a pocket so I assume she put the needle in the wrong place because after the first gush nothing else came out (the last time I had it done I lost several litres in the first hour or two.) Also no diuretics as doctor 2 said they wouldn’t work.

    The 350ml she drew off did very little to ease the pressure so I’m back home again in the same state I was in before I went. She said if I can’t cope with it or it get’s worse I can go back after Christmas, which in UK means 29th Dec. Otherwise she’ll see me on 10th Feb.

    They also both said when I asked them (they absolutely never tell me anything voluntarily) that it was almost definitely a recurrence but didn’t say what would happen next. I had my bloods taken, but no scan. So, I have to spend the next week with an embarrassingly huge belly, no appetite and worried sick about what’s going to happen next. I’m so sorry for the moan, especially at this time of the year, but my son is coming in a few days and I really wanted this year to be special.

    Sarah! I agree with Tina.
    Sarah! I agree with Tina. Reach a doctor ASAP before holidays or after, prefer different doctor for second opinion. I wish you have a good time with your son. Love, Zina.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #12
    Tina Brown said:

    Dear Sarah
    I feel so angry and sad for you when I read your recent post. The doctors should NOT have let you come home until ALL of the ascites had been drained off. And diuretics ???????????????? for a cancer related side effect?????????????? I think I would have laughed at the doctor who suggested that. I am sorry and I don't mean to belittle your experience but I think your doctors could've done more for you.

    I do hope you have a nice christmas with your family and if it were me I would go back in after christmas and demand they drain the ascites properly because you don't need to suffer today when there is a solution to your problem.

    Love Tina xx

    I'm with Tina.
    Ring again , they should have moved the needle to drain the rest of it off, it is not fair that should spend this special time feeling uncomfortable.
    Please ring again , I appreciate they may be busy ,but once the drain is in it is no trouble for them and it is is such quick procedure to pop it in and out again.
    My experience with mums hospitals , the james paget in great Yarmouth Has been so different they cannot help enough , and anything you want to ask or know we just ring them up, when she had ascites we just rang up and she went in.
    Apply the pressure if need be , say it is becoming unbearable, make them sort it. Xxxx

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