Blog Post
Lymphodema is a difficult challenge of having had breast cancer, but it is more than just wearing a sleeve. The sleeve prevents fluid build up in the arm, but some does still build up and you need to clear it out of your arm or armpit or wherever it is collecting. I found that you can only claim on sleeves that are custom made (BUPA). They are more like $280 each and you need 2 at a time which are replaced every 6 months. You might like to see a massage therapist fortnightly and also learn how to do clearance yourself.
Over 10 years (because I didn't know any of this), my lymphodema progressed to fatty accumulation in the arm, so my arm is now nearly 20% bigger than the other one, so wearing clothes is a major challenge. I had a DIEP reconstruction last year, with lymph node transfer, and that has improved manageability more. I still have to wear a sleeve and do clearance, but the opening of the scar and removal of scar tissue as well as the recon and lymph node transfer has improved me a lot. Now it is more under control, I am now looking at more surgeries: LVA and liposuction to get it better. If you have an infection in your arm, it needs to be treated ASAP, as you can get cellulitis, septicaemia and die, so it needs to be taken very seriously. Normal health professionals don't know much about it, it is a very specialist area.
There is a unit at Macquarie University and a rehabilitation hospital - Mt Wilga that are specialists in this area. I had my lymphatic system mapped at Macquarie University which was really helpful in knowing how to massage etc. Some sleeves are better than others. The specialists at Macquarie Uni say that not all sleeves are created equal. The flat weave sleeves are best. I met a woman who spends $10,000 per year on managing her lymphodema (which is an appalling ripoff by a particular therapist). This is why you need to be able to self-manage. It may even involve buying a pneumatic pump.
The body can also create new pathways in the 2 years following surgery which you can help along if you know how. Good luck!
Over 10 years (because I didn't know any of this), my lymphodema progressed to fatty accumulation in the arm, so my arm is now nearly 20% bigger than the other one, so wearing clothes is a major challenge. I had a DIEP reconstruction last year, with lymph node transfer, and that has improved manageability more. I still have to wear a sleeve and do clearance, but the opening of the scar and removal of scar tissue as well as the recon and lymph node transfer has improved me a lot. Now it is more under control, I am now looking at more surgeries: LVA and liposuction to get it better. If you have an infection in your arm, it needs to be treated ASAP, as you can get cellulitis, septicaemia and die, so it needs to be taken very seriously. Normal health professionals don't know much about it, it is a very specialist area.
There is a unit at Macquarie University and a rehabilitation hospital - Mt Wilga that are specialists in this area. I had my lymphatic system mapped at Macquarie University which was really helpful in knowing how to massage etc. Some sleeves are better than others. The specialists at Macquarie Uni say that not all sleeves are created equal. The flat weave sleeves are best. I met a woman who spends $10,000 per year on managing her lymphodema (which is an appalling ripoff by a particular therapist). This is why you need to be able to self-manage. It may even involve buying a pneumatic pump.
The body can also create new pathways in the 2 years following surgery which you can help along if you know how. Good luck!