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Breast cancer and Lymphoedema

hessomhessom Posts: 110 ✭✭✭
We recently published a blog post documenting (some) of Maureens journey with breast cancer and lymphoedema. From treatments and side effects to getting help and support and living with Lymphoedema, there's lots of interesting information in post (You can read it here!)

So we thought we'd ask the community about their experience with breast cancer and beyond. What helped you or is helping right now?! How are you navigating the world of breast cancer


  • cosiecosie Posts: 31 ✭✭
    Thank you, I like this blog story
  • SunshinedaffSunshinedaff Posts: 1,409 ✭✭✭✭✭
    edited December 2018
    I found this really encouraging, helpful and interesting.

    I was interested to read that Maureen was unable to have radiotherapy due to the lymphoedema.

    I developed lymphoedema after my surgery, I had a mastectomy and lymph-nodes removed.
    To be honest I had a worse time recovering from surgery than I did from going through chemo. It was probably not helped by having surgery only a few weeks after my last chemo session. I had very little immunity, and picked up a post-surgery infection. I only found out later how serious it had been when my surgeon informed me at my 'exit interview', my term :) , that she thought she would have to whisk me in for emergency re-surgery. I do remember the time we had to rush down to the hospital, after having had numerous phone calls with the nurses. I was wrapped in a towel and pyjama top, I didn't realise quite how serious it was, and did wonder why, when the surgeon suddenly appeared, she kept looking sideways at me. I know it doesn't sound gruesome, but it was! Haha. I can laugh about it now. 
    Consequently, I had been unable to do a lot of post-surgery exercises you get told to do, and my movement was very restricted. I was referred to physio, and it was the physio who noticed how huge my arm and hand were. I knew they were swollen, but thought it was just post-surgery inflammation. I had mentioned to her how painful my arm felt, it was like terrible nerve pain. Thankfully she immediately suggested it may be lymphoedema, and sent me back upstairs to see the breast care team. I was then referred to the Lymphoedema clinic, and had frequent appointments to help alleviate the problem. I was shown how to do lymph gland massage, to encourage the fluid to move up, and was also fitted for a compression sleeve and glove. I took pain relief for the nerve pain. The pain only affected my lower arm, the top part of my arm I have no feeling whatsoever, haven't done since surgery.
    Gradually the pain has subsided, my arm is still swollen, just not as much. Unfortunately it left me being unable to wear any of my long sleeve clothes, and even now I have difficulty finding anything long sleeved that I can wear (but really to me, a first-world problem, if I am going to worry, there are more important things to worry about). I now only have to see the Lymphoedema nurse yearly, which is great.

    In the midst of all this, I had radiotherapy, it never occurred to me to mention anything, and no-one else did either.

    Having lymphoedema has had an impact on how I do things now. I notice it gets worse if I do something for any length of time. Funnily, or not, last week I noticed how my arm had become very tender, and was more swollen. This was unusual, especially in winter, it's normally worse in the summer months, so I had to wear the sleeve and glove continually for about 3 days, until it had subsided and do round-the-clock meds.

    I also carry a Lymphoedema card (indicating lymph-node removal), issued by my hospital breast care unit,  in case of emergency.

    Lou x

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭

    Well, I have not had breast cancer and lymphoedema, but I was fascinated to read of Maureen's journey and that of @sunshinedaff - Lou. I am full of admiration for your courage in  coping with the disease whilst looking after your families and also for posting your personal experiences for the benefit of others. 

    Much of Maureen's advice is valid for anyone who has a cancer diagnosis. IE Take all the help that is offered, Don't believe everything you see online, make notes, and in my case definitely take someone with you to consultations - I can't remember anything according to my lovely wife. 

    Rob X 

  • SunshinedaffSunshinedaff Posts: 1,409 ✭✭✭✭✭

    Hi Rob, 

    Thank you so much for your kind words. If it helps someone else going through a similar thing, it's worth talking about. 
    Living with cancer can become a lonely place if we're not careful. Talking about our experiences may just be the very thing someone needs to get through theirs. 
    Haha, ditto about the memory, mine is definitely worse now, Even today I simply could not retain the fact my husband had an appointment this afternoon, we must have talked about it several times....just call me Dory!! (Quite apt I suppose, as I love swimming too).

    Have a good evening

    Lou x
  • SunshinedaffSunshinedaff Posts: 1,409 ✭✭✭✭✭

    Hi everyone,

    Wondering why my arm has been hurting me since yesterday with nerve pain, realised tonight the lymphodema has flared up again!

    I looked down at my arm and thought mmm looks swollen, compared it with my other arm, definitely a Michelin man impression going on!

    It had been much improved but I am wondering if the lack of regular swimming that I had been doing but am unable to do currently has impacted it. So annoying! Family say perhaps it's the painting I am doing?? 😄

    On with the compression sleeve and glove now and regular meds until it has reduced again. 😩

    Lou x

  • BrightstarBrightstar Posts: 259 ✭✭✭

    Sorry to hear about your flare up. Does seem a bit of a coincidence that it has flared up when you have not been swimming as much!

    I obviously have no experience of that, but did do a lot of reading up on it. It is one of the things I am worried about ending up with.

    I hope the swelling reduces soon and the meds help with the pain.

    Sending you a great big hug.

    Love Julie 🤗🤗😘

  • SunshinedaffSunshinedaff Posts: 1,409 ✭✭✭✭✭


    Hi Julie,

    Thank you so much!

    Yes, unfortunately it is one of the potential side-effects of having had surgery and lymph nodes removed.

    I probably should be wearing my sleeve more often to prevent flare ups, but I do forget about it! Must try harder!! 😄

    Thankfully there is help out there and I did have some excellent care from the Lymphodema clinic in Poole. It used to be in the Lewis Manning Hospice at Sandbanks.

    I am going to endeavour to return to swimming next week, I really miss it, and I know how much it helps me with everything.

    Hope you are having a peaceful day and you are not in as much pain as before.

    Chat soon,


    Lou xx

  • RobertARobertA Posts: 1,272 ✭✭✭✭✭
    edited February 2020


    Hi Lou

    So sorry to hear about your lymphodema flare up. I hope that it calms down quickly and that you will be able to get back to your swimming next week.

    It is a reminder if one is needed, that a cancer diagnosis changes our lives. Even when we are told that we are cancer free, we are still likely to be receiving medication and tolerating lingering physical and emotional effects.

    I know that my friends and family sometimes need reminding that I can’t do everything I used to do, and it is lovely to have our community group to chat to when I need it.

    Rob x

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