Do you have lymphoedema?
The ALERT (Australian Lymphoedema Education, Reseach and Treatment) team at Macquarie University are looking for people living with primary or secondary lymphoedema to complete an online survey which will help them to develop appropriate patient information resources. You can complete the survey via this link: https://mquni.au1.qualtrics.com/jfe/form/SV_721VztSK5hUBU8K
Sutherland Shire Breast Cancer Support Group
Sutherland Shire Breast Cancer Support Group Anyone who has ever had a breast cancer diagnosis is most welcome to come along to any of our meetings. 1st Wednesday of the month 7-9 pm at Tradies Gymea 57 Manchester Rd Gymea *5.30 pm Pre-group dinner in Willow Restaurant 3rd Saturday of the month At Camelia Gardens Tea Rooms 9.45-11.45 am President Ave, Caringbah As March is Lymphoedema Awareness month we have guest speaker ,physio specialist and very experienced in all things Lymphoedema We have a Facebook page and an email group for newslettersLymphoedema Information Day
Registration has just been extended until 13th March Come along to Tamworth for the Regional Lymphoedema Information Day on Saturday 21st March. To attend this wonderful day of learning about lymphoedema, the best practice to treat and manage this condition, latest research, and opportunity to see and talk to our sponsors about their lymphoedema products! 7.30-10 am Session for medical and health care professionals only 10am -4.30 pm Sessions for public-everyone consumers ,medical and health care professionals https://www.lymphoedemasupport.com/upcoming-events/information-day-2020 Send your registration form in by 13th March Go to www.lymphoedemasupport.com and follow the links to register. Don't miss out! Please go to the Lymphoedema Support Group of NSW Facebook page and like and share their posts. This conference is priceless opportunity for anyone who has had breast cancer surgery, or who cares for people who have had bc surgery . (family or service industry) or other cancers especially head and neck, genital /urinary/gynaecological , melanoma,. Gp's,physios, occupational therapists, massage therapists, podiatrists,- lots of people who could benefit from top notch advice to be able to help the estimated 40,000+ people living with lymphoedemea in Australia & New Zealand You can also be born with lymphoedema or a predispostion to it , or it can result from an injury, can be a side effects from many other diseases also . Not restricted to breast cancer . Up to 20% of all breast,ovarian and prostrate cancer survivors develop lymphoedema. Early treatment leads to better outcomes. It is essential for patients to have education and adequate support to ensure compliance and self care to reduce the impact of this chronic condition and reduce associated complications due to inadequate self management of lymphoedema.
Early stage lymphoedema
Hi everyone. So I’ve just come back from one of my lymphoedema clinic appointments and they said my sozo measures and arm measurements were a bit high. I’ve been given some extra exercises and self lymph draining massage instructions to do but I was just wondering for anyone who has had reversed it fro this stage had any extra tips that I can do to maximise my chances of turning this around ive got another appointment in 5 weeks and if it hasn’t changed they want to look at compression which I’m keen to avoid with the weather warming up I’m a busy mum of three and work from home on our own business too so there’s no time for gyms or yoga or anything like that, just looking for extra things I can incorporate into my already packed days. Appreciate any tips and tricks that you may have just for background I’ve had left side mastectomy, full auxiliary clearance, 3 weeks radiation and 16 rounds of chemotherapy all completed. Still doing immunotherapy and taking anastrozole Thanks and have a great day 🙂
Risk of Lymphoedema following skin cancer punch biopsy?
I was diagnosed in June 2018. I had 6 months of chemo, then surgery, followed by 3 weeks of radiation. I have avoided needles and having blood pressure measured from the arm where the nodes were removed. I now have a suspected squamous cell carcinoma under my index fingernail and a suspected melanoma on that arm. I have been referred on to a dermatologist as the skin cancer specialist at the clinic was reluctant to do it due to risk of lymphoedema. Anyone had anything similar?Sutherland Lymphoedema Support Group
New Lymphoedema face to face Support group for anyone Southern Sydney,St George areas as well as the Shire etc/ 'Under the umbrella' of Lymphoedmea Support Group of NSW For all types of lymphoedmea, not just breast cancer related, but there are quite a few BC related lymphies in the group and on the email list already. Everyone welcome, whether you have Lo or not, carers of people with LO, curious, service providers, guys, girls... Lovely location with beautiful beach view. No need to RSVP , just turn up and grab a coffee at the cafe and join us around the table in the semi private dining room. More directions and images on the Facebook page. Primary contact to group coordinators is via phone and email at the moment Note: A special Introductory night time meeting on Tuesday 25th Feb 6 pm Cronulla RSL. This is a first time a night meeting has been organised. Or every Third Tuesday of the month 10.30am
Some neat programs available on Counterpart ..... you can sign up to them
There are some programs on Counterpart (which is based in Vic, but hopefully members in any state should be able to sign up) - on Scanxiety (particularly for those with Mets) ... Lymphoedema, you can do Yoga, even belly dance - and meditative painting ... and also peer support. Check the programs & events here - and bookmark it for the future too. https://counterpart.org.au/events-programs/events/
Cooler Sleep - Mattress, Gel Pad, Sheets
Hello, I'm finding my mattress is holding heat in the night and waking me up. I'm wondering if anyone has used a Cooling Gel Pad under their sheets or mattress protector? Does it make you sweat? I'm interested in any tips on cool mattresses, mattress protectors, pillows or sheets to help this problem. I'm 18mnths since end of BC treatment, on Femara, I was perimenopausal at diagnosis, and now have consistent hot flashes but not buckets of sweat. I can sort of cope with this with CBT, wearing layers, fans, etc. I also have breast lymphoedema so cool sleep is super important. I feel there's got to be a better combination of mattress, mattress protector, pillow and sheets to help this problem. I've looked back through previous posts, but thought I'd start a new one as summer has started :-/ Many thanks. Grace
Looking for recommendations in Sydney
Hi all, I have some practical things that I’ve been struggling with and I figured I’m unlikely to be the first. I had a single mastectomy and auxiliary lymph node removal in November and have been having issues finding bras - I’m 35 so I’m looking for something with underwire and padding that also has a pocket for the prosthetic. No such bras seem to be available at the list of stores given to me by the breast care nurses. My scar goes across where the nipple would be rather than where an underwire sits so I’m still able to wear underwire comfortably and since my remaining breast is a DD going without underwire, padding and structured support isn’t my favourite. The berlei post surgical bra was fine for around the house but don’t work under a lot of my wardrobe and again, the support issue is a problem. I figured a good option was to get a couple of my favourite bras tailored to add the pocket. Problem is trying to find someone who can do that sort of work is proving very difficult. The one guy I found in balmain showed me a method that looks like it’ll damage the bra and not have a great result. So any recommendations would be amazing. Also looking for inner west lymphatic drainage massage recommendations (that don’t cost the earth). Any suggestions for how to minimise lymphadema risk and tricks and hints for getting used to it all would be much appreciated. My hope is for a reconstruction but my surgeon says that’s about two years away. Thank you so much katherine
