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!
DCIS Support
Hi everyone, My name is Elle, I was diagnosed with High Grade DCIS one week ago today. Since then I have seen the breast surgeon and booked in for a lumpectomy on 5.11.19 and radiation which will come a couple of months after as long as a) My genetic testing comes back okay and b) The DCIS isn't as widespread as the surgeon thinks it will be. From what I can understand on the report from the stereotactic biopsy the DCIS measures in 2mm. At the moment I'm just feeling terrified about everything happening now and about the future, particularly that it will come back or that it will spread before I have surgery. I feel like I'm scared of everything. If anyone can help to ease my anxiety I would greatly appreciate it. Elle
Check with arms up infront of mirror ladies. Tamworth NSW
My mammograms are all up to date. My last one was in May 2018. It was the 6th October a Saturday evening as I stood in front of the mirror bare from the waist up and reached above my head to tie up my long hair, I noticed a very slight indentation happen under my nipple on my left breast, I thought it was unusual, so I turned to see better under the light. Was there something there? I put my arms down and it disappeared! I put my arms up again and it reappeared. I felt for lumps, there weren’t any, no pain, no discharge and no skin issues. I showed my husband. Then I decided that this must be a “change”, perhaps the sort of change that the “All Clear” letter I received in late May from BreastScreen said that I should report. My doctor sent me for another mammogram and an Ultrasound and if required a “Biopsy” The woman who performed the mammogram said to me “it’s looks all clear, nothing to worry about, but your doctor wants an ultrasound” After the ultrasound was completed the woman who had done it cam back into the room and said “You need to have biopsies in your left breast and armpit” I had invasive ductal carcinoma grade 3 and 1 lymph node that was positive. ER + and PR+ HER2 Negative I have since had a CT Scan which has shown another infected lymph node and a Bone Scan, which was clear. When in the surgeon’s room he noted that the BreastScreen mammograms of 6 moths earlier showed my enlarged lymph node. 😱 After hearing my options for treatment I have gone for a full left mastectomy and axillary clearance, performed on 12th November and at this stage I believe I am in for the full spectrum of treatment. After surgery the surgeon informed me that the results showed I also had high grade DCIS that extended to the inferior margin, so it was heading to my feet. (Solid and Comedo) Margins were involved, however after consult with oncology radiologist they feel it will be taken care of by chemo and radiation. Chemo plan is FEC-D for 4-5 months, the radiation and hormone treatment. Chemo to start on 18th December. I have always had lumps and bumps in my right breast, but have been told they are dense fatty tissue, my left breast always felt clear. My mother had breast cancer and had a lumpectomy with 8 out of 16 positive nodes.
Introduction
Hi every one. I'm Sandra and have been diagnosed with DCIS in June. It cut the story short I had a partial mastectomy in July and I am lining up for a full mastectomy and immediate reconstruction on the 23 rd of this month. I'm in a bit of a mess. I think I have been refusing to really face things until now and the anxiety and lonely feelings have hit with a vengeance. Asking for help is really hard but if there is a shoulder to cry on I would be very grateful.