Ask the Expert: Living well with lymphoedema with Maree O’Connor
Good morning everyone! Sharing that we are hosting our next Ask the Expert Digital Event next Thursday evening on the 7th of April, which will focus on living well with lymphoedema. The event will run from 7.00pm - 8.00pm AEST via Zoom. To register, please click here. Lymphoedema is swelling that occurs when lymph fluid builds up in the tissue under the skin. It can develop after surgery or radiotherapy to the lymph nodes under the arm and surrounding area. Surgery and radiation can interrupt or damage some of the nodes and vessels that lymph moves through, resulting in a backup of fluid in the tissues (lymphoedema). While there is no cure, early detection and ongoing management and treatment are important to prevent lymphoedema from worsening and to enable you to live well with it. At this Ask the Expert event, we will hear from lymphoedema physiotherapist Maree O’Connor and BCNA Consumer Monique Bareham. Maree is lymphoedema physiotherapist with over 30 years experience in the management of lymphoedema for people affected by breast cancer and Monique was recently announced as South Australia’s 2022 Local Hero for her advocacy for compression garments for lymphoedema after her own personal experience of lymphoedema following breast cancer treatment. This session will address what you need to know to be able to live well with lymphoedema, including symptoms you may experience, how you can reduce the risk of developing lymphoedema, current and emerging treatments, where you can find help and what you can do to help manage lymphoedema. During this 60-minute Zoom event you will be able to ask Maree and Monique questions. Please share your questions prior to the event via the question box on the registration page, email events@bcna.org.au or during the evening via the discussion box on your screen. Event Details: Date: Thursday 7 April 2022 Time: 7.00pm - 8.00pm AEST Where: Online – from your computer, tablet, or laptop Your Local Time: WA: 5.00pm NT, SA: 6.30pm QLD, ACT, NSW, TAS, VIC: 7.00pm
Recurrence in lymph nodes
Hi everyone, I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018. Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!! I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason. Worried and sad, but trying to be strong. Sally
Surgery Option or Not?
Hi Everyone, I was diagnosed de novo Stage 4 with breast, lymph node and bone/spine mets in Oct 2018. I've had really good response to treatment with Letrazole/Ribociclib/Denosumab whereby the breast lesion and lymph nodes are barely visible on my last CT/Bones scans in May, they've shrunken significantly. My bone/spine mets is relatively inactive and stable. All good, yay! :) So today I saw my Breast Surgeon for a courtesy progress check and she is now offering the option of surgery to remove what remains of my breast lesion and possibly "Level 1" lymph node removal. Am having an ultrasound next Thu to actually find out what is remaining, as not much is showing up on the scans and on physical exam today, she couldn't really feel anything either. She was rather taken aback at my response to treatment and said I had "responded remarkably well", double yay! :) So my questions are: 1. Would you have the breast surgery? I'm told it would be "minor surgery"/day job, no drain, 1-2 weeks recovery, they remove the lesion with a wire, so no big cuts. I would potentially have shooting pains that last a few seconds from time to time, most likely forever, post surgery. 2. Would you have the lymph node removal? Depending on ultrasound results, but she's thinking to do only a Level 1 lymph node removal, which is the lowest level of that type of surgery. She said post surgery, I may get numbness in armpit/upper arm from nerves being cut, apprx 15% /lower risk of getting lymphodaema, may get some cording in my arm which could be resolved by phsyio. She spoke with my Onco whilst I was seeing her. He's on the fence and said they decision is up to me. I would just need to go off the Ribos' for 2 weeks prior to surgery. Post surgery, I'm not sure what happens yet... may depend on the lymph node prognosis as well I guess. I may need some radiation therapy... chemo wasn't really mentioned at this stage. I was thinking (but to be discussed), I'd just go back on the drug therapy as per before. I know there are no guarantees that the cancer would be entirely removed and it could come back in the breast/lymph node. And they of course can't remove it from my spine. The bonuses would be that I would get some definite pathologies post surgery of the lesions and potentially I wouldn't have to deal with large tumours in my breast/lymph down the track, and then just focus more on holding the cancer at bay in my spine. And I know it could eventually show up elsewhere as well. But removal, would be just that little bit less cancer in my body. I've got to have some more discussions with the Surgeon and my Onco, but I'm leaning towards doing the surgery at this point. However, I'd really value any thoughts from anyone out there on this. Has anyone done this? What have been your experiences? What are the gotcha's I need to look out for? Or should I not do it? What do you think?
Lymph nodes
hi gals. Ive had my mastectomy 14mnths ago, triple neg, did 16 rounds chemo n 25 radiation. Got through it ok, now 6 mnths later, accute lyphodema. My arm is huge and painful and swelling across chest, dark burgundy/black patches on skin. Had scans galore and mri has detected cancer in some of remaining nodes. Going for PET scan friday. Wont know till next wednesday all gory details. So, my question is to anyone out there is .....has anyone had re-occurance of their breast cancer 6mnths after treatments and in nodes? Im getting all sorts of scary vibes, not quite saying, but basically, im stuffed by all involved. Id love to hear from someone that may have had similar situation. Its a long shot i know. Thanks for this forum that gave me a chance to vent at least. Cheers