Lymphoedema Sleeves

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!

@sandramj Isn't it ridiculous how difficult it can be to find out what is covered and what is not.  Your flow chart idea is a great one.

@sandramj, if you still have receipts you should be able to claim on the sleeves already purchased.
@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

Yes, @Brenda5 that seems to be the case - but annoying to me as if you don't know what you don't know you can't ask questions about it.   And I PRESUMED my breast surgeon and his TEAM would keep me informed.  NOT SO!  Anyway I guess I'll just keep sharing info on here and hopefully if we ALL do that that we will ALL get the info we require.  

If you don't ask you don't get is what I was told.

OMG. I just did some research and found out that Qld Health supply TWO garments twice a year for free for lymphodema.  Ive emailed them and asked about physio etc and what else is available for breast cancer patients WITH A HEALTH CARE CARD or on PENSION etc.  
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

I hear you @lrb_03, here in NSW I was told you had to basically be on the poverty line to get any rebate for the compression garments and like you and @Afraser, I need to have custom ones so it is not cheap. I do get some rebate from my private health fund for the sleeves but needing to have massages / therapy at least once a month (and for a while there it was weekly) the 5 medicare visits and the private health cover ran out pretty quickly. It's frustrating that there isn't equity across the States, but even more frustrating is the lack of general support for what is a chronic condition - the least that could be done is to increase the 5 medicare visits to 10. The ongoing financial / emotional impact of breast cancer is something I struggle with all the time. 

@sandramj, each state & territory has different allocations of funding for lymphoedema services and compression. Here in the ACT if you have a health care card AND meet certain financial eligibility criteria,  you can be reimbursed for 2 full sets of compression garments per year. On the other hand, SA have nothing at this point, I believe, although they are working towards something.

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

Wow. I’m gob smacked. 

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. :neutral:

It depends a lot on what you need. I have a made to measure Jobst, which costs more but is very hard wearing and works well. I am just about to order a 2nd hand as my first one is beginning to show a bit of wear which is not surprising! Having had off the shelve (OK but not so effective) and locally made to measure (pathetically bad in quality and accuracy of measuring - and not cheap), I will stick with what works for me. But I agree, lymphoedema treatment of any kind is hard to get recognised and supported. Even my private health care stuffed things up - I elected for cover (checking it would cover lymphoedema) only to find my claims knocked back. Further investigation revealed I am covered for speech therapy! Fixed and backdated, but operative left in little doubt that I don't need help in the speech department. Have to laugh.