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

Bugger, yes I too got dealt that card and weirdly I found it much harder to cope with than everything else I had thrown at me. Probably because the surgery and treatment were a means to an end. This seemed to be forever. I went through a period of bandaging for 6 weeks. My hand was a real problem and took lots of work, my poor fingers were like sausages. However many years later and it is much better and well under control. I wear a garment over my hand and lower part of my arm most days and for majority of the day. My garments are custom made as the off the shelf ones were not helping. As I work as a nurse I need to wash my hands all the time, I also have a long sleeve with a separate glove (which spends most of my shift in my pocket ). I self massage every day without fail. Some days longer than others. If I have a special occasion I leave the garments at home. It’s just part of me now and I try not to dwell on it. My lymphedema is really good now, but if I didn’t do what I do it would flare up again. It does get better with good management. Hang in there.paula xxx

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

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 mormalitySending you a virtual hug x

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

@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.

Breast Cancer surgery - the gift that keeps on giving

SoldierCrab
Member
6 years ago
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
SoldierCrab
Member
6 years ago
@Sister
was it you who put up the video about it ?
iserbrown
Member
6 years ago
Geez Nadi who'd thought after all this time! Lots of useful information on the forum

Take care
Nadi
Member
6 years ago
@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.
iserbrown
Member
6 years ago
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
Zoffiel
Member
6 years ago
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
BlackWidow
Member
6 years ago
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_BCNA
Member
6 years ago
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.
Afraser
Member
6 years ago
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.
arpie
Member
6 years ago
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