fluid retention in legs/groin/peritoneal area

eward
eward Member Posts: 210
in Ovarian Cancer #1
Has anyone experienced fluid retention in their legs/groin/peritoneal area - unrelated to ascites?

My mom has been experiencing this and they tried to drain her peritoneal area yesterday only to find that the fluid problem is not related to ascites.(She does have lung ascites. This seems unrelated.)

Her Primary Peritoneal cancer has been stage 4 for two years now and she does have lymph node involvement. Could that be the cause of the fluid retention? She is a thin person otherwise and has never had this type of swelling.

Eileen

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    I'd bet this is lymphodema.
    My ankles swelled considerably during my 1st remission (summer 2009) in the hot part of the summer, and after an 11-hour flight to Greece, my pelvic mound also swelled up (scared me!) Two gynecologists dismissed it as lymphodema, and I persisted in getting a referral to a certifed lymphodema specialist. She told me that swelling in the pelvic and genital region is common in gynecologic cancers because of lymph node removal, radiation of lymph nodes, & lymph node involvement. Oncologists seem to pooh-pooh lymphodema as a minor side affect of treatment, nothing imporartnt in the bigger picture, but if you start wearing compresssion garments in the earliest stages of it, you can keep it from ever getting bad.

    I have worn compression socks since 2009 and my ankles never swell anymore. But if I decide to wear sandals and leave off the socks, my legs feel like lead at the end of the day. The pelvic swelling never came back for me, but if I even suspect I look a little puffy 'down there', I wear Spanx for compression. & I look slimmer to boot!
  • eward
    eward Member Posts: 210
    #3
    lindaprocopio said:

    I'd bet this is lymphodema.
    My ankles swelled considerably during my 1st remission (summer 2009) in the hot part of the summer, and after an 11-hour flight to Greece, my pelvic mound also swelled up (scared me!) Two gynecologists dismissed it as lymphodema, and I persisted in getting a referral to a certifed lymphodema specialist. She told me that swelling in the pelvic and genital region is common in gynecologic cancers because of lymph node removal, radiation of lymph nodes, & lymph node involvement. Oncologists seem to pooh-pooh lymphodema as a minor side affect of treatment, nothing imporartnt in the bigger picture, but if you start wearing compresssion garments in the earliest stages of it, you can keep it from ever getting bad.

    I have worn compression socks since 2009 and my ankles never swell anymore. But if I decide to wear sandals and leave off the socks, my legs feel like lead at the end of the day. The pelvic swelling never came back for me, but if I even suspect I look a little puffy 'down there', I wear Spanx for compression. & I look slimmer to boot!

    thanks
    Thanks, Linda. I am glad the pelvic swelling never came back for you. I will share your story with my mom. She has had a rough couple of months, but her CA came down from 3600 to 2400 after her chemo was changed to Abraxane, so I am hopeful that she will have relief of some of these problems. She and I just spoke about the fact that oncologists don't deal with anything that they don't see as life threatening. I didn't know there were lymphodema specialists. I will talk to her about that, too. Quality of life is so important, oncologists should care more about some of these so-called "little things."

    I think I will look into the Spanx for myself!! Aren't they hot in the summer?
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #4
    eward said:

    thanks
    Thanks, Linda. I am glad the pelvic swelling never came back for you. I will share your story with my mom. She has had a rough couple of months, but her CA came down from 3600 to 2400 after her chemo was changed to Abraxane, so I am hopeful that she will have relief of some of these problems. She and I just spoke about the fact that oncologists don't deal with anything that they don't see as life threatening. I didn't know there were lymphodema specialists. I will talk to her about that, too. Quality of life is so important, oncologists should care more about some of these so-called "little things."

    I think I will look into the Spanx for myself!! Aren't they hot in the summer?

    Hiya Eileen
    Hiya Eileen I am sorry to hear of your mum's discomfort. Quality of life is so so important because if you are reasonably content day to day then you can bear the discomfort of the illness.

    My oncologist has a similar outlook regarding "if it life threatening they will act otherwise they won't intervene" I still have a bit of fluid around my lungs that is stopping me running - thus my quality of life could be better. But because I am OK on a day to day basis they won't do anything. I wanted it draining completely and then have the talc put in to stop anymore fluid coming back.

    Hope things go much better for your mum with the spanx

    Tina xx
  • eward
    eward Member Posts: 210
    #5
    Tina Brown said:

    Hiya Eileen
    Hiya Eileen I am sorry to hear of your mum's discomfort. Quality of life is so so important because if you are reasonably content day to day then you can bear the discomfort of the illness.

    My oncologist has a similar outlook regarding "if it life threatening they will act otherwise they won't intervene" I still have a bit of fluid around my lungs that is stopping me running - thus my quality of life could be better. But because I am OK on a day to day basis they won't do anything. I wanted it draining completely and then have the talc put in to stop anymore fluid coming back.

    Hope things go much better for your mum with the spanx

    Tina xx

    thanks
    Thanks, Tina. My mom has had a permanent drain in her right lung for almost a year and it had helped quite a bit. She and my dad are able to drain it weekly. I don't know if they do the talc procedure as much over in the states. I have heard and read about it but I haven't met anyone over here who had it done.

    I hope your fluid issues are resolved soon so you are able to get back to running!
    xoxo
    Eileen
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #6
    eward said:

    thanks
    Thanks, Tina. My mom has had a permanent drain in her right lung for almost a year and it had helped quite a bit. She and my dad are able to drain it weekly. I don't know if they do the talc procedure as much over in the states. I have heard and read about it but I haven't met anyone over here who had it done.

    I hope your fluid issues are resolved soon so you are able to get back to running!
    xoxo
    Eileen

    Hello Eileen
    The trouble with the talc procedure is that the space in between the lung and the pluera has to be dry & ALL of the fluid needs to have been drained. I couldn't have talc in my left lung because I have a small amount of fluid "trapped" in a pocket. It is a great procedure if it works as it completely prevents the fluid build up.

    I have discovered through swimming that my lungs are good enough to cope with the exercise (I am up to 34 lengths non stop :)) So the problem I have is not my lungs but is being 2 stone overweight!!!!!! So I am following a sensible diet to try and get back to my pre-cancer weight.

    Hugs to you and your mum xxxxxxx Tina

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