So confused, scared and teary
Hi all, I was just diagnosed yesterday with DCIS intermediate grade 2 and told to get off my HRT patches immediately. I have 3 areas in the one breast so I think i will need a masectomy. I have been contacted by Peter Mac in Melbourne regarding my referral and just waiting on confirmation of my appointment date. My brain is saying if I had to have cancer this is the one to get but my emotions are being ridiculous, so teary inside but cool and calm on the outside trying to support everyone else. If I do need a masectomy i want to have reconstruction surgery on the same day with a small implant but Im so worried as 6 months ago I was let go at work due to business downsizing and ive really struggled to find another job, my mum has just passed away and any savings I had have helped with the funeral etc so basically I am seriously going through hardship and only just paying my rent on my job seeker payment. I am so scared that I will find out going through this process there are some unexpected charges that arent included, all the sites say peter mac is free and I am bulk billing but Im so scared that my health is going to held back due to financial stress. Has anyone had this process done at peter mac, chose the medicare bulk billing option and was their reconstruction covered? Sorry Im really rambling here but its so much easier to type this to a stranger than someone I know. xxxxx
DCIS, DMX reconstruction new diagnosis
Recently diagnosed DCIS Stage 0. Opting for DMX and reconstruction using my tummy fat same day…. Videos and some social media groups are TBH quite confronting and disturbing. I would rather know but….. Reading and hearing how awful the recovery is, pain, discomfort, loss of movement and after some helpful tips to prepare please: particularly diet, did you change your diet pre surgery? High protein to help with recovery? Can you recommend a website or recipe site? Things post surgery: hire a recliner to rest in, did you hire a wedge or breast pillow as well? Button up shirts and pjs, anything else that you found useful please? I’ve heard about the drains which sound daunting… what do i need to do with them? Toileting and cleaning myself… I hear you can’t put your arm around your back to wipe? I’ve got wet wipes but …. Don’t want to ask my partner to wipe my bum? Diet after surgery to avoid constipation. Any tips would be greatly appreciated thank you so so much.
No tests before surgery
Hello everyone, im having surgery in 15 days. Obviously im getting a bit more anxious. I asked my Dr do i need scans or bloods before my bilateral mastectomy he said no. My sister said that is strange and not right. She made me worry and stress more. I just want to get thru this and hopefully be all clear and not require further treatment. Can I ask what others have had to do prior to surgery..eg bloods and such. Thank u xxx? Worried that there is worse not found yet
Hello everyone, so I had high grade dcis removed with good margins following a lumpectomy. I am having a bilateral mastectomy in 20 days. My brain is running wild with the what ifs. Im terrified they may find something else when I have the surgery. My surgeon seems pretty confident that the mastectomy will remove any worries like that. Do others panic about things like this. Waiting for surgery is torture for a super anxious person like me. Thanks for letting me vent. Hugs to all xHigh grade DCIS
Hello everyone, diagnosed with high grade DCIS I've had a lumpectomy. The surgeon said clear margins. Im scheduled to have a bilateral mastectomy in 29 days. Im going to go flat no reconstruction. I have no family support and quite frankly a useless husband. Rocky marriage prior to the diagnosis. My surgeon said I don't need lymph nodes removed because of the clear margins. I have myself dead and buried im terrified. I have no one to talk to. Hence why I'm here reaching out to you wonderful people. Please be a support for me I have no one. I've lost two sisters to this disease I don't want to join them just yet. Love and blessings ShannonDCIS - Mastectomy - Recon - clear for two years....now potentially something else
My situation in a brief paragraph: At 50 years of age, I was diagnosed with DCIS in my left breast. I opted for a bilateral mastectomy and recon. Sentinel nodes were clear. No radio or chemo required. That was almost two years ago. Apart from now suffering all the typical effects and symptoms of menopause due to no HRT, I've been blessed with a dream run and fantastic road to full recovery from BC. Completely grateful and thankful for the team and support I've had around me. The latest situation is that I've just been for my second annual post BC ultrasound with a view to reducing visits with my surgeon from three monthly to annually. I was looking forward to kissing cancer goodbye!! However, the sonographer has found an inflamed and vascular looking lymph node in my right armpit (opposite side to original BC diagnosis). It was explained to me that this can be due to a number of reasons: fighting off an infection, breathing in smoke, recent flu vaccinations or, at worst, something more sinister like cancer. My surgeon reviewed this and wants another ultrasound in three months to check on it and if need be, will biopsy then....I have a sick feeling about this. Since I don't feel like I'm fighting an infection, I haven't breathed in smoke lately & my flu vax was done 10 weeks ago in the opposite arm .... I am feeling extremely anxious that cancer has returned and that it's found a spot in my right armpit to grow and spread. A three month wait to see if this is or isn't the case seems like absolute torture and a return to 'the waiting game' that only cancer sufferers know. I'm sure that most of you reading this post can relate to the worry of 'the wait' when you have that initial cancer diagnosis. The awful feeling of being out of control and the unknown picture of what's up ahead. Sleeplessness has returned. Constantly thinking about it has returned. The worry has returned. I have back and neck pain that I'm sure is due to the stress, but am naturally concerned it's cancer returned. Since my mastectomy and recon, I've been able to put all of that aside - until now. Has anyone here experienced a vascular anomaly with their lymph nodes post having BC and recon? If so, what was it attributed to? How was it handled by your team? Should I be asking for a lymph biopsy or intervention earlier than waiting three months or am I worrying unnecessarily? I'd be grateful for any thoughts, honest advice or similar experiences & decisions that anyone can offer.
Newly diagnosed - DCIS
Hi all, newly diagnosed this week. Feels like the longest week ever and have been taking the time to look through various posts and resources. Thanks for sharing your stories. Following a breast screen 'callback' and biopsy on Monday I was given the diagnosis of DCIS in my left breast on Monday 17 July. I kind of feel out-of-body at times, and do I even have 'real' cancer. I felt guilty for worrying. At this point I am taking the public hospital option with good services (I am told) in my area. Of course, my worry is that I have cancer somewhere else. I believe they do a PET scan as part of the process. I am 56, married, 2 grown up daughters. Our youngest recently married the most wonderful young man. Happy times. Thanks again everyone and glad to have this forum as an additional resource.First consultation for DCIS - private or public?
I was diagnosed a few weeks ago with low-grade DCIS, showing up in 2 clusters of microcalcifications on my right friedegg. All quite sudden given I'm 42 and was expecting to be chased away from BreastScreen NSW telling me it was cysts, which has happened to me previously. Instead, I got the works (mammo, ultrasound, biopsy wootwoot), with the diagnosing doctor recommending a mastectomy because: 1. I'm small (barely a B cup) - so a wide-local excision would leave a "poor cosmetic result" 2. I have a family history of bad boobies - my grandma had a mastectomy in her late-50s, and recently 2 of my cousins (also in their 40s) have had surgery and chemo related to breast cancer. So while I'm grateful that it's been spotted early, I'm still reeling from the recommendation of "just-in-case" breast removal, and wondering about "wait-and-see" DCIS trials that are happening in Europe and the US... In any case, when my logical brain can function it's telling me to chill the hell out, and just go see a practising surgeon to get more info. My question: I don't have private health insurance due to just moving back home to Sydney, but I am prepared to cover some of the consult costs myself (probably not the surgery... if it's needed) if it's better to meet with a doctor at their own practice. The doctor I'm thinking of seeing (Cindy Mak) operates out of her own consult rooms and the RPA Lifehouse. Does anyone know if it makes any difference which consult rooms you start with? Should I save myself a couple hundred and blow it on much-needed anti-anti-cancer-diet supplies of wine and chocolate? And any feedback on Cindy Mak or Belinda Chan? Thanks in advance ladies. <3 And sorry if I sound flippant, I'm actually feeling quite blue after starting all this research and need to gee myself up.DCIS not sure how to feel
Long story so I do apologize. In Nov 2015 I took a massive step of having weight loss surgery. In June I went to see my plastic surgeon in Sydney for my pre op to having loose skin removed due to my severe weight loss. Now just only about 3 weeks prior to this appointment had I had a mammogram as part of the surgeons request prior to breast implants. 10 mins before this pre op appointment I got the diagnosis of DCIS, I was told I was ‘lucky’ that it’s very early, didn’t feel lucky. Needless to say I had to put all my planned skin removal surgery on hold. I saw a general surgeon who explained what DCIS was and due to my extensive DCIS and my small and known hypoplastic breasts I was advised to have a nipple sparing mastectomy. I was in shock, I work at the only public hospital in my town and didn’t want everyone knowing my business so opted to go private. Little did I know that I would not have access to a breast care nurse or any help at home afterwards (we are British and have no family). So I had my mastectomy and expander filled with air, and lymph nodes removed, Jesus wept no one prepared me for how much that lymphcintograpghy would hurt, I cried, no mean feat for a 40 year old women to not be able to hold herself together, I felt quite ashamed but was told I had done very well as most women swear or scream the whole Centre down!. Anyway I had terrible post op nursing care, had huge amounts of skin reactions and no real follow up care. Went back to see the surgeon for my test results to be told that even though they had taken 5cms of cancer away the margins were at 6.5cms and included the nipple so 2 weeks after the first op I had to go back to theatre. Again I had my expander filled with 200mls of saline. No one told me how painful this thing is and I now have to endure another 150mls put into it this Friday on my own as my husband can’t be at the appointment to support me and I’m so scared about it. I have contacted my local breast care nurse who doesn’t really want to see my as I’m classed as a private patient not public but she said oh yeah they do move and are uncomfortable and you need yours filling up ASAP. I’m left feeling, well I don’t know really. I have an appointment in Sydney with my plastic surgeon but no idea how I’m going to get there or afford to get there and arrange to have the kids looked after as both are under NDIS as have special needs. Our business had to stop for 8 weeks thanks to COVID-19 so all our savings have disappeared. I know I would of had to go to Sydney anyway eventually to see her to discuss implants etc but I think it’s more all this emotional stuff and the anxiety over having to come out of more anesthesia is giving me severe ‘I can’t do this anymore moments’. The expander is so uncomfortable and I have to go back to work as a nurse as I don’t have much more leave. I have nerve pain and a seroma too. anyway, this is just true tip of the iceberg. Sorry for the long rant!
