Lymphoedema Sleeves
I purchased my first sleeve through the breastcare surgeons rooms and cost $79 for Jobst sleeve. However as I was made aware I would now need to wear this EVERY DAY for the rest of my life I checked around for better prices. I found a site in the US that sent very quickly and they also had a silicone topped sleeve which was a couple of dollars dearer but it grips and stays up and doesn't roll down so its my "good one" or "going out" one. I also found a place in Vic who send sleeves out and cost was $53. FYI Here is the screen shot of my order.
HOWEVER, HUGE BUG BEAR OF MINE IS THAT IF YOU GO THROUGH THE PUBLIC SYSTEM YOU ARE GIVEN THREE A YEAR FOR FREE!!!!!! However, it is nigh near impossible
to get into that public system once you've had surgery in private. In fact I am yet to get a breast care nurse - A year yesterday since diagnosis. Ive emailed, phoned local hospital and McGrath foundation, and even had my GP write and phone the local public hospital - yet to no avail. McGrath nurses listed aren't still doing it and there is NOT ONE McGrath nurse on the Gold Coast - Unbelievable. There is one at Tweed Heads, two at Ipswich and many more in Brisbane. Anyway that's another story. I did get a letter from the Gold Coast university Hospital responding to my GP's letter and phonemail saying they hope and estimate I should get an appointment within say 90-120 days!!!!!!
HOWEVER, HUGE BUG BEAR OF MINE IS THAT IF YOU GO THROUGH THE PUBLIC SYSTEM YOU ARE GIVEN THREE A YEAR FOR FREE!!!!!! However, it is nigh near impossible

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My surgery was private and I was offered a breast nurse at the private hospital. I have a public breast nurse who is also the McGrath nurse.
My chemo was public after I saw the oncologist privately for initial consult.
My rad is private but bulk billed.
These differences between services are what is wrong with the system. Every person should receive equality in care. We shouldn’t have to adventure our way through the system.
https://www.bcna.org.au/media/2141/bcna-lymphoedema-fact-sheet.pdf
The above fact sheet shows what assistance may be available. My private health insurance rebates up to 60% of the cost of 2 garments per year. The local public lymphoedema clinic don't have capacity to provide lymphatic massage, as all. They teach self massage, wrapping , general management strategies and do garment measuring. They also provide laser therapy. Their funding is currently under review, and not guaranteed beyond this financial year!!
The whole situation makes me so angry. There are many people out there with lymphoedema who willl struggle to pay for garments up front, and then wait for bureaucracy to reimburse them, especially for custom made garments, which, as @Afraser commented, cost around $500 for a sleeve and glove combination, which is what I require. I certainly can't afford to have more than one set on the go at a time, in spite of needing to wear them every day. I haven't had a day without compression in well over 2 years now
I am beginning to think we need a flow chart for each state from start to finish to show what we are may experience and what is available and where for each of us.
Here's the link for the compression garments in QUEENSLAND.
https://www.health.qld.gov.au/__data/assets/pdf_file/0032/149945/patient-info-sheet.pdf
@Brenda5, you are right.
@Jane221. Like you, i have a lymphatic massage every 3-4 weeks to maintain my lymphoedema. With this, it has remained stable for a long time. As you say, you quickly run out of subsidised visits, regardless of where the subsidy comes from.
The ongoing costs are something that is forgotten once active treatment is over. We have lymphoedema. I have a friend diagnosed osteopaenic at her 1st dexa scan, prior to coomencing an AI. She pays approx $500 twice a year for the medication for that, not covered by PBS. And as @sandramj commented, the ongoing cost of mammograms etc as we are excluded from breastscreen for at least 5 years. These are just the easy things to come up with. Like you, I struggle with the ongoing financisl and emotional impact of bc
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!
www.opchealth.com.au
They are in Melbourne and have specialty fitters or if you know what you are after you can order on line. Janine X