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Breast Cancer surgery - the gift that keeps on giving

NadiNadi Member Posts: 604 ✭
edited April 2019 in Now what? The highs and lows of survivorship
Hi all.

Feeling a bit down about just being diagnosed with lymphoedema. Thought I had dodged that bullet, but alas, no.

The Lymphoedema specialist gave me a booklet by Cancer Australia, but it lacks practical advice from women who have been there, done that. 

Lymphoedema affects my fingers, hand and arm. Grateful for any advice you might have. Also appreciate any websites or forums that may help.

Thanks in advance, Nadine
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Comments

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,240 ✭
    oh bugger @Nadi
    I didnt dodge that bullet... 

    There are some great Youtube videos and BCNA ones on dealing with it.  I will try to find them for you 

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,240 ✭
    @Sister
    was it you who put up the video about it ? 

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,955 ✭
    Geez Nadi who'd thought after all this time! Lots of useful information on the forum

    Take care 
  • NadiNadi Member Posts: 604 ✭
    edited April 2019
    @iserbrown I know, right??? My reaction was WTF?  Sigh.... the specialist thinks that maybe my whole lymph system got out of whack following my major stomach surgery. Not sure why this would have started my arm off, but it is what it is I guess. 

    Just watched the BCNA webcast on it. Wish I had been more vigilant with a few things. This definitely all started after two cuts a month apart on my arm.
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,955 ✭
    edited April 2019
    Oh bugger!
    I don't have lymphedema as such but I occasionally get a tightness in the sternum and a build up of fluid in my left arm. The sarcastic name is tuck shop arms. Anyhow I have a lymphatic drainage massage about 3 maybe 4 times per year.
    Recently I had surgery requiring drainage tube and it was only in  for about 14 hours. I believe it was my maintenance, I had a lymphatic drainage massage 48 hours prior to surgery.  The Anaesthetist gave me a look like I was whacky but I was pleased as it paid off!
    Wishing you all the best and mormality
    Sending you a virtual hug x
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,888 ✭
    Mine isn't terrible, but it is present enough that I have to wear a sleeve for a couple of weeks every few months. For me, the pool and yoga make all the difference. 45 minutes of frantic treading water and arm churning during a deep water aqua aerobics class can take that horrible heavy feeling away
  • BlackWidowBlackWidow Lake GardensMember Posts: 175 ✭
    Hello @Nadi.  My friend has acupuncture for her lymphoedema. They do not needle anywhere near her surgery side but seem to have got the lymphatic system working better and the sessions last 3-4 weeks.  As she has other medical issues she is pleased to report they have also had vast improvement.  Worth a go, I say.  I have had massage but not all therapists are trained in that.  It is time consuming and expensive.  Anne
  • Riki_BCNARiki_BCNA Administrator, Staff, Member, Moderator Posts: 276 ✭
    Hello @Nadi I am sorry to hear that you have developed lymphoedema and as the ladies have mentioned with good care it can be managed well.
    The Australasian Lymphology Association is a useful website with information and access to accredited practitioners 
    https://www.lymphoedema.org.au/
    BCNA also has a fact sheet that you might find helpful too
    https://www.bcna.org.au/media/6868/bcna-fact-sheet-lymphoedema-jul-2018.pdf
    Dont hesitate to call the BCNA Helpline to speak to a cancer nurse for support.

  • AfraserAfraser MelbourneMember Posts: 2,690 ✭
    Miserable thing about lymphoedema is that it can occur up to 15 years after surgery! My left arm is affected - my hand was initially affected but only because of gravity, a compression. sleeve and hand got my fingers back to normal quite quickly.  They don't sound enjoyable but I have become very accustomed to them and they keep my arm very stable. No
    pain, no heavy feeling, no limits on what I can do, no infections bar one (exercise caution with manicures on the affected limb!). Best wishes.
  • arpiearpie Mid North Coast, NSWMember Posts: 3,413 ✭
    That's a buger, @nadi - you've been thru enough!  2 buddies wear a compression sleeve to help theirs - flesh covered, so really not too noticeable unless up close.  One in particular is still very active outdoors & in her kayak, fishing.  She is currently driving around Aussie, on her own!  I hope you are able to find something to deal with it, that helps you  xxx   take care
  • SisterSister Adelaide Hills, SAMember Posts: 4,457 ✭
    @SoldierCrab If I did, I can't remember  :/
  • NadiNadi Member Posts: 604 ✭
    @Afraser I was in denial for a bit. Tried to convince myself the swelling, heaviness and ache was arthritis until it got a lot worse and much more noticeable. I never knew it was possible to get it so long after surgery. My op was Nov 2015 so just 3 and a bit years ago and I only had sentinel nodes removed so I thought I would never get it. Didn't know it come years and years after surgery and there's still a risk with SNB removal if you've had taxol and radiation to armpit. Learning a lot.

    I have a great lymphoedema specialist. Getting my compression sleeve and glove tomorrow. Looking forward to getting rid of the ache and swelling. Not sure how I am going to go with the sleeve when I still have so many hot flushes.
  • AfraserAfraser MelbourneMember Posts: 2,690 ✭
    One thing at a time, once you get your sleeve and glove you need a bit of time to get used to them. A good specialist will make sure the fit is right and then I hope the ache and the heaviness will be alleviated. I had a lot more nodes removed and taxol, but but no radiation. There's work being done on node transplants, but it's early days yet. Best wishes for feeling much better soon. 
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,153 ✭
    Hi @Nadi, I'm so sorry that you've developed lymphodoema on top of everything else. I have been managing my lymphodoema now for a few years and I have to say when it was first picked up I was a mess, it really felt like the last straw. It's now something I accept but still really wish I didn't have to. I have it in my hand and arm and wear a compression sleeve almost continually now and see a specialist physio once a month for a massage and to use their pneumatic compression sleeve. Both of these things relieves the build up of fluid and tension in my arm, which can get really tight and sore. In between visits I do self-massage, elevate my arm as much as possible and do some arm exercises. Exercise, especially waterbased like @Zoffiel suggested, is also great and I need to try and do that more often. I do find the compression sleeve and glove very effective so hopefully that will help you too. Best wishes, Jane xx
  • lrb_03lrb_03 Member Posts: 1,171 ✭
    Hi, @Nadi. Sorry to hear you've developed lymphoedema.  Lymphoedema can occur any time after damage to the lymphatic system, even 10 or 15 years later. Only having  sentinal nodes removed reduces the risk, but doesn't eliminate it, unfortunately. I had neoadjuvant chemo,  incuding docetaxol,  a different taxane. My lymphoedema developed 6 weeks after my surgery, going in to my first sleeve the day that I started radiotherapy. Been in it ever since. 

    I'm co-coordinator of a local lymphoedema support group in the ACT. We meet once a monthl, mostly on a Wednesday morning but 3 oror times a year we have evening catch ups. We are,  quite simply, a group who get together to support each other, and exchange ideas about how best to look  after ourselves, our skin, our garments. We have a FB presence, search Canberra Lymphies or pm me and I'll give you our email address. Also happy to catch up one to one if that helps.

    Take care
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