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arpie
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Re: Preparation for mastectomy + DIEP + potentially port removal
That is a real bummer about the Port wound not closing & possibly being infected winter-spring! I would be surprised if they went ahead with any surgery until that is totally healed! Where on earth did you find the terms 'dehiscent' and 'exudate' - Out of interest - do you come from a medical background!!! ( 'dehiscent' means - a wound splitting and/or bursting - and 'exudate' means - seeping/weeping wound!) That is the very first time I've heard either word! LOL!! (They are good descriptions of it, tho!) Definitely monitor the wound for redness around it and/or warmth and of course, your own temperature too. Frozen shoulder is a real pain - I had it for some years before intervention (it usually only gets worse, not better, without medical intervention!). I'd tried accupuncture, ultrasound & exercises - but it continued to get worse - I ended up not being able to wash my hair & had difficulty feeding myself as I couldn't raise my hand/arm above shoulder height. It is quite common in women - probably from all the grocery bag carrying & carrying kids (if you have them!) Having said that - I never had kids - maybe it was my fishing (lots of casting) that contributed to mine? I ended up having a procedure done on my left one 25 years ago (aged 50) & ten years later, keyhole surgery on the right one for a mix of frozen shoulder, rotator cuff injury & torn bicep! WELL worth having it done, if it is affecting your lifestyle, tho it DOES take quite a while to get full range of motion back afterwards. Re exercises ... just do what you normally do - and don't overdo it, specially with your shoulder limitations but particularly due to the Port wound not healing. Stay out of pools - in case it infects it further!! Have they taken blood samples yet to make sure you don't have a blood bug that is preventing the healing? That REALLY IS weird! They sure wouldn't want that to happen with your upcoming major surgery!! Let us know how you go! Take care & all the best Just double checking you aren't Diabetic, or pre-Diabetic? It can definitely impact wound healing!1ViewSign in to react to this post1CommentRe: Skin care when
Terrific that you are recovering well from your surgery & the healing is going well too Suzywong Your surgeon and/or BreastCare Nurse should advise you on skin care, specially re the scars until healed. Only use what they recommend until the scarring is totally healed. Once healed, there are different lotions/potions that will help reducing the scarring longterm. My surgeon put me onto a silicon gel called Kelocote (you can get it at a good price from Amazon) which really reduced my scarring. You only use once the scar is fully healed - and only use a tiny amount & only put it on the actual scar - I was very happy with the results. Wishing you all the best for the Rads - make sure you ask which lotions they recommend that you use so you can buy it in readiness. I think I had about 22 sessions - 4 x weeks of Mon-Fri then 2 x booster sessions! take care17ViewsSign in to react to this post1CommentRe: Out of the blue!!
DBee070608 I am so sorry to see you joining our select little group …. Whack up ANY questions that you may have, as we’ve all ‘been there, done that’ and all of us combined, should be able to give you a helpful answer. xx How long til your hubby should be up & able to drive & 'run round' after you? Not to long, I hope xx BCNA has a TNBC Private Group that you may like to join - just go to this link & & join, tho today being a public holiday - the Mods won't check it now til tomorrow xx. They should be able to answer most of your questions. Everyone remembers the shock of hearing the ‘diagnosis: “You've got breast cancer” ..... Causing sadness, distress and even anger. It really mucks with your brain, sometimes even more than your body! It can be highly stressful & upsetting in the early days of diagnosis - so if you feel a bit overwhelmed by it all, give the BC NA Helpline a bell on 1800 500 258 (Mon-Fri, 9-5) for a confidential chat with one of the Mods xx. Make sure you take a trusted friend or relative with you to all your meetings from now on (for physical and mental support - and also a 2nd set of ears!) & also consider recording them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx Make sure you stay away from “Dr Google’ (difficult tho it is) - as a lot of info there is not only out of date - it probably also isn’t even relative to your own diagnosis. Going down that rabbit-hole will also muck with your brain. Also, Consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'! She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html Check out this thread too - there is a lot of info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest take care & all the best2ViewsSign in to react to this post1CommentRe: New diagnosis
I am so sorry to see you joining our select little group …. Whack up ANY questions that you may have, as we’ve all ‘been there, done that’ and all of us combined, should be able to give you a helpful answer. xx Everyone remembers the shock of hearing the ‘diagnosis: “You've got breast cancer” ..... Causing sadness, distress and even anger. It really mucks with your brain, sometimes even more than your body! It can be highly stressful & upsetting in the early days of diagnosis - so if you feel a bit overwhelmed by it all, give the BC NA Helpline a bell on 1800 500 258 (Mon-Fri, 9-5) for a confidential chat with one of the Mods xx. Make sure you take a trusted friend or relative with you to all your meetings from now on (for physical and mental support - and also a 2nd set of ears!) & also consider recording them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx ABSOLUTELY - stay away from “Dr Google’ (difficult tho it is) - as a lot of info there is not only out of date - it probably also isn’t even relative to your own diagnosis. Going down that rabbit-hole will also only muck with your brain. Also, Consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'! She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html Check out this thread too - there is a lot of info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest take care & all the best5ViewsSign in to react to this post0CommentsRe: MRI guided biopsy in NSW
Bummer! :( Sorry. :( The San at Wahroonga appears to be correct - it may be worth calling them & maybe North Shore Radiology? They may also bulk bill? It could be worth calling this mob too - they say that if you have a valid Medicare card, it is bulk billed.... they are at Randwick https://www.seslhd.health.nsw.gov.au/royal-hospital-for-women/services-clinics/directory/royal-hospital-for-women-breast-services All the best19ViewsSign in to react to this post0CommentsRe: Recurrence?
Hi LP020406 ... I am 9 years out since first detected (in my early 60s) and have had no recurrence or other cancers to date. Try not to worry too much about recurrence (difficult tho it is as we've all 'been there'.) Sadly, they don't know who will have a recurrence or why some do & others don't - we all just live in hope that it won't be us. xx I saw my Breast Surgeon & Radiation Oncologist for 5 years following my surgery & Rads - and my Medical Oncologist for just over 7 years which was reassuring - as they check you out thoroughly with every appointment! .... I am still having yearly mammograms and ultrasounds - mine next ones are in a couple of weeks. Just be vigilant of your body - if you notice anything that hangs round for more than a month (aches or pains, lumps or bumps ...) make sure you get thoroughly checked out!! Take care xx23ViewsSign in to react to this post0CommentsRe: MRI guided biopsy in NSW
Sorry Moomincorn ... mine was only Ultrasound Biopsy .... but a quick google found this - all the best xx Where to Access Services in New South Wales: Because an MRI-guided breast biopsy requires specialized equipment and dedicated breast radiologists, it is offered at select comprehensive breast imaging and private hospital networks in Sydney and NSW San Breast Care / San Radiology & Nuclear Medicine (Wahroonga) – Offers MRI-guided vacuum-assisted core biopsies. Australian Breast Centre (Sydney CBD / Martin Place & Dee Why) – Provides integrated breast diagnosis, imaging, and specialist consultations. Sydney Breast Clinic (Sydney CBD) – Specializes in multidisciplinary breast assessment and diagnostic services. North Shore Radiology & Nuclear Medicine (St Leonards / North Shore Private Hospital) – Provides specialized breast MRI and diagnostic evaluations. Major Public Tertiary Hospitals (such as the Royal Hospital for Women in Randwick or Westmead Hospital / Westmead Breast Cancer Institute) handle complex high-risk diagnostic and MRI-guided pathways via specialist referral. NSW Govt info on it: https://www.nsw.gov.au/health-and-wellbeing/cancer-support/breast-cancer/patient-resources/breast-mri10ViewsSign in to react to this post2CommentsCould Gut Issues possibly contribute Progression to Metastatic?
Following on from Professor James Lawson and his local and international colleagues searching for the causes of breast cancer over the last 30 years. By 2021 they had found some of the answers - you can read about his research here: https://onlinenetwork.bcna.org.au/discussion/25105/review-new-book-called-catching-breast-cancer-by-james-lawson-eminent-breast-cancer-researcher#latest Could the health of the gut quietly influence whether certain breast cancers spread through the body? New research from the University of Virginia suggests that the answer may be yes, especially for hormone receptor-positive breast cancer. This common subtype of breast cancer has benefited from major treatment advances, yet metastasis remains a serious concern. The study highlights a surprising player in that process: the gut microbiome and its role in regulating bile acids. Altogether, the work suggests that gut health, the microbiome, bile acids, and immune responses may be more intertwined with metastatic breast cancer than previously appreciated. While it is too early to translate these findings into routine clinical practice for every patient, the research opens up new directions for treatment and prevention strategies. It also illustrates how looking beyond the tumor and into the broader systems of the body can uncover powerful influences on cancer progression. Read about it here: https://news.virginia.edu/content/qa-could-better-gut-health-help-fight-breast-cancer55ViewsSign in to react to this post0CommentsRe: Letrozole explained - a good read
Well done Afraser .... I reckon many who don't complete the 5 years also don't tell their Onc .... so won't be in the figures! Yep, I had arthritis prior to my diagnosis, so the Letrozole, Exemestane and Anastrozole all added to my aches & pains by more than 100%. The foot pain (as described by Tri ) was debilitating, as was the hand pain and the trigger fingers. But I lasted for about 6.5 years .... My bone density isn't too bad - tho am taking Caltrate again, to be sure to be sure!! 2 of my sibling's mothers in law had mastectomies some 40-50 years ago (it was the only option back then) & they were on Tamoxifen for 10 years ... and were in terrific form and shape well into their 90s when they passed from old age .....21ViewsSign in to react to this post0CommentsRe: Letrozole explained - a good read
My feet used to KILL me!! I'd have to stop still, mid stride until it passed & only then could I continue walking. :( I tried Exemestane for 6 months after just 6 weeks on Letrozole. Then was on Anastrozole for the next 6 years, which wasn't too bad. Mind you, I was on Medicinal Cannabis Oil for most of the 6 years, and that really took the edge off it. Also helped me sleep better - the other bad side effect of the Meds!! Good luck with Tamoxifen - hope you don't get the hot flushes back!!24ViewsSign in to react to this post0Comments
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Connecting rural, regional & remote areas
We understand that living outside major cities can bring unique challenges when it comes to accessing care, support, and information. From long travel distances to limited local services, these experiences can feel isolating—but you're not alone. This is a space to connect with others who truly understand what it’s like to face breast cancer while living regionally or remotely. Share stories, ask questions, and support one another through the frustrations and the wins - this group is here for you.Invasive Lobular Cancer (ILC)
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.Carers corner
Whether you're caring for a partner, parent, child, or family member, this group offers a safe and understanding place to connect with others in similar roles. Share your experiences, talk through the personal challenges of being a carer, and find support from a community that truly understands the emotional and practical realities of caregiving for a loved one with breast cancer.Breast cancer without children
Whether by choice or circumstance, navigating breast cancer without children is a unique experience that can feel unsupported or isolating. This group offers a compassionate space to connect with others who understand, share experiences, and find strength in community also living breast cancer without children.
