Member: Jane221 | BCNA Online Network

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Re: Do you have lymphoedema?
Hi GorgyS, I use a night compression garment, the Comfiwave sleeve from Haddenham Healthcare and have found it to be an effective way to continue compression in a gentle way throughout the night. It's easy to put on and quite comfortable so it doesn't disrupt my sleep. Hope this helps :)
1 year ago Place General discussions
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Re: Do you have lymphoedema?
Thanks Afraser, I definitely agree, it definitely is a variable / complex health issue which needs specialised care and many more trained therapists.
1 year ago Place General discussions
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Re: Do you have lymphoedema?
Thanks GorgyS, I hope so too.
1 year ago Place General discussions
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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
1 year ago Place General discussions
lymphoedema
research
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Re: Lumpectomy vs mastectomy and lymph nodes surgery
Hi @noosa_blue150, as @Afraser said, it can depend a lot on a number of factors whether you will need / be advised to have radiation. I had 2 tumours (1 Invasive lobular tumour, ER & PR+ and 1 ductal tumour, HER2+) and had 1 positive node and so when I had my mastectomy I also had an axilla clearance. I went on to have chemo, Herceptin and radiation and am still on Tamoxifen. I had hoped to avoid radiation but given the size of the lobular tumour and its location close to the chest wall I was advised to have radiation, which I decided to have. That was 8 years ago now. Best wishes for your remaining treatment. Jane xx
5 years ago Place Chemotherapy and radiotherapy
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Re: Anyone here having trouble with Arm Compression Sleeves
Hi @PamelaP, it can take a while to get a good fit with the sleeve and like @Afraser, I've had to get a made to measure one which is now (finally) working quite well. I'm also using a Jobst, the Elvarex CCL2 and haven't had any issues with the grip tops. I also had an elbow insert put in to help alleviate any redness / sore areas. Hope you can find the right one for you soon, it's such a frustrating thing to try and get right. Best wishes, Jane
6 years ago Place Side effects
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Re: Port removal: general or local
Hi @Feathers, I had mine taken out under light sedation and all went well - seems to be a good middle ground. Best of luck with your procedure, it's a great milestone when the port finally is removed <3
6 years ago Place Chemotherapy and radiotherapy
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Re: Need suggestions for instant relief from cording
@Nadi, how horrible for you. I'm glad you're doing OK now but a definite reminder (especially for those of us with lymphodema) to be vigilant, I know I'm sometimes a bit dismissive of these things. Hope you continue to recover well. Jane xx
6 years ago Place Side effects
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Re: Hiding in plain sight
Hi @BowerBird11, I hope you are recovering well after your surgery. Those early days are so confusing and confronting but it is good to have somewhere here to ask questions and vent when necessary. I had my mastectomy back in 2012, almost 8yrs ago now and the main tumour was ILC (strongly ER & PR+). It was a scary time but I'm blessed to still be here and hopefully will be for many years to come. Best wishes to you xx
6 years ago Place General
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Re: Need suggestions for instant relief from cording
Sorry to hear that @Nadi. I hope you're on the mend soon.
6 years ago Place Side effects
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Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
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This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
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PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.

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Jane221

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Let's talk: vaginas, menopause & me

Invasive Lobular Cancer (ILC)

Choosing breast reconstruction