6th March, World Lymphoedema Day
lrb_03
Member Posts: 1,269 ✭
How many are aware that yesterday was World Lymphoedema Day, or that March is Lymphoedema Awareness Month? I will admit to some disappointment that BCNA has not made any mention this year
Are any of you aware that in the Lymphoedema community it is considered best practice to obtain measurements with a Lymphoedema practitioner before surgery? This enhances the possibility of early detection of changes. Early detection is key to good management.
A small percentage of those who have a sentinal node biopsy will develop lymphoedema while 20+ % of those having a lymph node clearance will develop lymphoedema. This holds true for many cancers and associated surgeries. I was lucky. About the only good thing the local BCN did for me when I saw her (after much pushing during pre surgery chemo) was to suggest I see our local private therapist for measurements before I had my surgery. That was five & a half years ago. About 4-5 weeks post op I complained of an "achy" arm and she told me to get an appointment with the physio asap. I saw her 10 days later, on the day I started Radiotherapy. By that time, my watch was getting tight on my wrist. I left that appointment in my first compression garment.
I've been lucky. My lymphoedema has remained stable, in large part thanks to that early diagnosis.
Doctors get very little education about the lymphatic system and lymphoedema, so don't rely on them to always recognise it or to know how it should be managed. For that, you need a physio or OT with specialised training.
Lymphoedema in Australia doesn't have a Medicare item number. Public hospitals with Lymphoedema clinics find money from within their existing budget but can't claim against it for additional funding.
There is great inequity across states in how (if one exists) garment subsidy schemes work. For example, after not having a scheme at all, and after many years of advocacy from their support group association, South Australia finally got a scheme in the last 12 months
I'm sure that there is a lot more that I should be saying, but thank you for reading if you've got to the end of this post
Please open this attachment for some more information about Lymphoedema
Are any of you aware that in the Lymphoedema community it is considered best practice to obtain measurements with a Lymphoedema practitioner before surgery? This enhances the possibility of early detection of changes. Early detection is key to good management.
A small percentage of those who have a sentinal node biopsy will develop lymphoedema while 20+ % of those having a lymph node clearance will develop lymphoedema. This holds true for many cancers and associated surgeries. I was lucky. About the only good thing the local BCN did for me when I saw her (after much pushing during pre surgery chemo) was to suggest I see our local private therapist for measurements before I had my surgery. That was five & a half years ago. About 4-5 weeks post op I complained of an "achy" arm and she told me to get an appointment with the physio asap. I saw her 10 days later, on the day I started Radiotherapy. By that time, my watch was getting tight on my wrist. I left that appointment in my first compression garment.
I've been lucky. My lymphoedema has remained stable, in large part thanks to that early diagnosis.
Doctors get very little education about the lymphatic system and lymphoedema, so don't rely on them to always recognise it or to know how it should be managed. For that, you need a physio or OT with specialised training.
Lymphoedema in Australia doesn't have a Medicare item number. Public hospitals with Lymphoedema clinics find money from within their existing budget but can't claim against it for additional funding.
There is great inequity across states in how (if one exists) garment subsidy schemes work. For example, after not having a scheme at all, and after many years of advocacy from their support group association, South Australia finally got a scheme in the last 12 months
I'm sure that there is a lot more that I should be saying, but thank you for reading if you've got to the end of this post
Please open this attachment for some more information about Lymphoedema
Tagged:
1
Comments
-
Thanks to @Irb_03 for providing this information. I also had my first warning when I noticed my watch strap was tight (I’ve never had any discomfort). My senior oncology nurse at day oncology was brilliant, confirmed it was likely to
be lymphoedema and referred me to an excellent therapist. Like @Irb_03, my lymphoedema has remained very stable thanks to my therapist and early detection and action. I’ve never had a BCN but all the nurses at day oncology were excellent and good sources of information. I can get partial coverage of remedial massage on my private health insurance (Bupa).1
