Lymphedema

jajmom
jajmom Member Posts: 33 Member
in Anal Cancer #1

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  • jajmom
    jajmom Member Posts: 33 Member
    #2
    Lymphedema

    I was diagnosed with stage T2 squamous cell with mesorectal and extra mesorectal lymph node involvement. My radiation was given over an extended area of my pelvis, more intense at the tumor site. I am two months out of treatment and have been experiencing some fairly bad swelling of my feet and legs. Does anyone else have this problem?

    Also, I am curious to hear from others who have gone  recurrence free that had extensive lymph node involvement. This scares me the most because they don't actually remove or biopsy these nodes, only go by their appearance on the CT scan. Now I will have to wait a year before I have another scan. I should also mention that I had small sclerotic foci on several vertebrae and on my liver in an earlier scan (Drs. didn't seem concerned) , but nothing was mentioned regarding these areas on my last scan (post treatment ). The scan readings were like night and day. One was a plethora of information and one had no details what-so-ever. I hate to second guess the doctors but do these things just disappear or should I ask to have the latest scan re-read?

    Thanks.....just still quite nervous. Hopefully it eases up after a couple of good checkups :)

     

  • mp327
    mp327 Member Posts: 4,440 Member
    edited August 2017 #3
    Jajmom

    Lymphedema is a common post-treatment issue for many people.  I have had a little, but it's not too bad.  Some people use a massaging technique to relieve the lymphedma.  You might ask your doctor(s) about that.  I would also obtain the film of your last CT and ask your doctor to look at it in your presence and see what he/she thinks it shows.  And by all means, if you want a second reading of it by a radiologist, ask.

  • jajmom
    jajmom Member Posts: 33 Member
    #4
    Good Idea

    Thanks Mp327,

    Reviewing the CT scan along with the Doctor sounds like the route I'll take. (I had forgotten that they have the actual scan images at their fingertips) I won't see her until early October, but that's okay. It's sometimes difficult to bring up questions that the Doctors feel you don't/shouldn't have any knowledge about. Well, I can't speak for anyone else, but after diagnosis I made it my mission to learn everything I could about the disease we are facing. It didn't make me more afraid...but it did help me feel a little bit more in control of the crazy turn my life had taken.

    Thanks for the advice.

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited August 2017 #5
    jajmom...

    Hi, and congratulations on finishing treatment! As mentioned, lymphedema is common for many after surgery and/or radiation. I'm sorry this is part of your recovery process. I was initially dx 6 1/2 years ago for anal cancer stage 3b with pelvic lymph node involvement. I have very slight swelling in my feet and legs and can't even say if its due to my treatment or not, as it is something I have had most of my adult life and contribute it more to issues with vericose veins. I do however wear compression socks most days and have prescription thigh high ones that I often wear at night or when I know I may be sitting for extended periods of time like traveling in the car. I have heard that some people report positive results from massaging techniques as Martha mentioned. More annoying to me is that I seem to also have some pelvic lymphedema below my belly button area that I did not have previously. Continue to research treatment options as although there may not be a complete cure for lymphedema, it certainly can be controlled so it does not get worse.

    I like the suggestion to review your scan along with your doctor. Often patients feel that because we don't have a medical degree, we should not ask questions that might make us sound like we don't know what were talking about. Remind yourself that regardless of how your doctor is getting paid, he or she works FOR you and you deserve to walk out of the office confident in knowing all that is going on.

    We all continue to learn as we move forward, and I am so thankful to have this board of others who share their knowledge and educate each other. Sometimes I think our doctors ought to be reading here as well!

    I will have you in my thoughts and prayers as you move ahead, and please keep us posted on what you learn.

    katheryn

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