Hello everyone. It has been ages since I have posted. Since this site was re done I no longer got notifications, then 2 major surgeries in 2016 and life kind of took over.I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation?

An update on my last post - beware the manicure. I did get cellulitis after a manicure - probably not even the salon's fault - pushing down cuticles even with clean implements may be enough to let the sort of germ that would not normally cause any issue at all into the body and the arm is simply not well enough defended. Once I twigged what it was (bit slow there!) it was easily fixed by antibiotics and I was actually quite pleased that it had started to resolve without treatment - something's still working! Been fine since, but don't want to do that again.

@Chrissy555, if you're looking for a qualified lymphoedema therapist, try this linkhttp://www.lymphoedema.org.au/the-register-updated/find-an-ala-accredited-practitioner/Hope that helps

just want to mention that if you have trouble getting to a physio with experience in lymphodema and/or have issues with doing the self massage (I have damage to the other arm), I trialled a compression pump at my local oncology unit and then brought my own and got a physio at specialist lymphodema clinic to show me how to use it and now use that at home regularly. Bit expensive upfront to buy but I'm in a country area without access to lymphodema trained physios and for me was definitely worth it.

Jobst all the way. I need made to measure, they are expensive but one of the good things Qld health do. I am seen by their cancer occupational therapist who measures me and I don’t pay. Very grateful.

Can lymphoedema occur well after an operation? I never experienced it after my operations in 2015. Just recently I'm experienced discomfort under my right arm. My lumpectomy was on my right breast with no lymph nodes removed. There is always something for us to face isn't there? Im sure there will be some lovely ladies who will be able to help with advice.

Lymphoedema and recurrence fears | BCNA Online Network

64 Replies

mum2jj
Member
7 years ago
Jobst all the way. I need made to measure, they are expensive but one of the good things Qld health do. I am seen by their cancer occupational therapist who measures me and I don’t pay.
Very grateful.
Afraser
Member
7 years ago
I was OK on an off the shelf number until my therapist felt I needed something more around the wrist. A locally made to measure was selected. Total nightmare. Badly made (expensive), badly measured, popped into 2 holes day 3, badly repaired. Oh and as it bottle necked, hideous to get on and off. One of the very few times during diagnosis and treatment I was reduced to tears. So a Jobst made to measure, and have never looked back!
Andij
Member
7 years ago
My goodness after not getting notifications about recent posts for well over a year I think they started popping up yesterday

So now 2 years down the track almost - It does get easier. Unfortunately I tried out a cheaper garment this year and have had nothing but hassles getting it right so will pay more money next year and get my original brand of garment - Jobst. Has anyone else had problems with different brands?
TripleNegMama
Member
7 years ago
just want to mention that if you have trouble getting to a physio with experience in lymphodema and/or have issues with doing the self massage (I have damage to the other arm), I trialled a compression pump at my local oncology unit and then brought my own and got a physio at specialist lymphodema clinic to show me how to use it and now use that at home regularly. Bit expensive upfront to buy but I'm in a country area without access to lymphodema trained physios and for me was definitely worth it.
lrb_03
Member
7 years ago
@Chrissy555, if you're looking for a qualified lymphoedema therapist, try this link

http://www.lymphoedema.org.au/the-register-updated/find-an-ala-accredited-practitioner/

Hope that helps
Afraser
Member
7 years ago
An update on my last post - beware the manicure. I did get cellulitis after a manicure - probably not even the salon's fault - pushing down cuticles even with clean implements may be enough to let the sort of germ that would not normally cause any issue at all into the body and the arm is simply not well enough defended. Once I twigged what it was (bit slow there!) it was easily fixed by antibiotics and I was actually quite pleased that it had started to resolve without treatment - something's still working! Been fine since, but don't want to do that again.
Chrissy555
Member
7 years ago
Thank you for the info, can you tell me which physio you visited?
kind regards
christine
Andij
Member
9 years ago

Vix said:

I hear you Andij! I too have been living with left arm lymphoedema which came on a few months after mastectomy & full node clearance in March 2010. Have to admit I have moments where it drives me nuts and stopped me playing high level sport (tennis & netball) & serious gym workouts. But most days I just see it as part of me, can't change it, I manage it well with compression sleeve and have an amazing Physio who specializes in lymphoedema (they are hard to find). I also do my self maintenance and basic lymphoedema exercises. I follow lymphoedema pages on FB which give great tips and advise, and am a member of Lymphoedema Qld to keep in the loop with any new info.
Living in Brissy during summer doesn't help one bit. Also I am diligent if I garden to wear a long sleeve top and gloves as cannot afford to risk a scratch or insect bite due to the risk of cellulitis. I did get a cellulitis infection Feb 2016 which saw me in hospital for 4 nights and missing a cruise and the irony I did not have a bite, scratch or mark anywhere on me - infectious disease Dr said it can just often be caused by our own skin bacteria, regardless of the high level of personal hygiene. Thankfully I recognized the signs early, went to the ER & admitted, they pumped high dose antibiotics into me.
I am so used to going out wearing my sleeve I don't give it another thought unless a random stranger asks why I wear it, I just usually say I have an injury and the pressure garment is part of recovery - I am not one to discuss my private health hurdles with a stranger as I just want to be treated as normal. If we are going out somewhere special ( and I know there will be good air con) I won't wear my sleeve if I can get away with it but always take it in my handbag. So thankful off the shoulder loose tops and dresses are in, as they hide the swelling, sleeve and mastectomy nicely! Stay strong, it's a roller coaster of a journey this ride we are on but we do it and do it with a positive mindset. We never give up! Big hugs x

Thank yu Vix:) It is indeed a roller coaster ride hey. One I often wish I could get off, as do we all of course. Yes, it took me a little while to accept when I got Lymphedema but have accepted it now. It is just the way it is. It has been rough through this hot Brissy Summer. We have never used our air conditioner so much. Do you wear yours at night too?
Afraser
Member
9 years ago
Very much my own feelings! I'm lucky, I don't have much swelling so it's not noticeable. No infections, touch wood, in spite of doing stupid things with roses. I too get a few comments on my compression 'hand and arm' - in the mood, I just refer to it as my bionic arm! My terrific therapist keeps it under control and me amused, and I hear so much worse things on this site. I'd have taken those lymph nodes out too, they were signicantly enlarged and the one that was biopsied was malignant. So no quibbles from me about that.
Vix
Member
9 years ago
I hear you Andij! I too have been living with left arm lymphoedema which came on a few months after mastectomy & full node clearance in March 2010. Have to admit I have moments where it drives me nuts and stopped me playing high level sport (tennis & netball) & serious gym workouts. But most days I just see it as part of me, can't change it, I manage it well with compression sleeve and have an amazing Physio who specializes in lymphoedema (they are hard to find). I also do my self maintenance and basic lymphoedema exercises. I follow lymphoedema pages on FB which give great tips and advise, and am a member of Lymphoedema Qld to keep in the loop with any new info.
Living in Brissy during summer doesn't help one bit. Also I am diligent if I garden to wear a long sleeve top and gloves as cannot afford to risk a scratch or insect bite due to the risk of cellulitis. I did get a cellulitis infection Feb 2016 which saw me in hospital for 4 nights and missing a cruise and the irony I did not have a bite, scratch or mark anywhere on me - infectious disease Dr said it can just often be caused by our own skin bacteria, regardless of the high level of personal hygiene. Thankfully I recognized the signs early, went to the ER & admitted, they pumped high dose antibiotics into me.
I am so used to going out wearing my sleeve I don't give it another thought unless a random stranger asks why I wear it, I just usually say I have an injury and the pressure garment is part of recovery - I am not one to discuss my private health hurdles with a stranger as I just want to be treated as normal. If we are going out somewhere special ( and I know there will be good air con) I won't wear my sleeve if I can get away with it but always take it in my handbag. So thankful off the shoulder loose tops and dresses are in, as they hide the swelling, sleeve and mastectomy nicely! Stay strong, it's a roller coaster of a journey this ride we are on but we do it and do it with a positive mindset. We never give up! Big hugs x