Newly diagnosed with DCIS - starting the rollecoaster
Hi all, I live in Geelong. I'm 41. Single mum to a 13yo son, co-parent 50%. I was diagnosed with DCIS estrogen+ on the 14th Feb. Luckily is stage 0, which eases my worries a bit. My mum and sister had stage 2, and they are in remission. So this gives me hope and keeps me positive. I am not scared of the surgery or radiotherapy...but just have lots of doubts of how is the process going to affect my ability to concentrate on my phd and thesis writing and my ability to work (part time teacher, looking for change in career). I'm considering taking an intermission from my phd, but I don't know for how long, and how I am going to support myself financially. Did anyone kept working or studying through the treatment? I'm a planner....but this doesn't have a timeline...and I think I just have to take a day at the time. I don't have a date for surgery and radiotherapy yet...I don't know how long is going to go for and how I am going to feel.....My guess is just go with the flow.....
Questions for your surgeon/medical team when diagnosed - ILC based but also relate to other BC types
This document has a huge number of questions that you may like go over - and put to your Surgeon, Onc, and/or Medical team at some stage of your diagnosis and treatment ..... Altho it is based on those with Invasive Lobular Cancer (ILC) .... many of these questions also relate 100% to all BC Types .... the more questions you ask, the more you understand your diagnosis. Go thru them and see if any may relate to you. If some questions specifically refer to ILC - you could replace ILC with 'your' BC type ..... and see if you'd like to put any of them to your own medical team? https://lobularbreastcancer.org/wp-content/uploads/2023/03/Questions_for_My_Doctor_FINAL_-2023.03.21.pdf
Wound care/protection post-surgery
Hi everyone, This is my first post so a little introduction: After a routine mammogram I was diagnosed with DCIS high grade, 6mm in right breast which was removed two weeks ago. I was offered and opted for a therapeutic mammaplasty through the public healthcare systerm; and I had a matching breast reduction in the left breast at the same time (I'm only 160cm tall and my large breasts have caused me a great deal of shoulder/back pain so I jumped at the opportunity to have them reduced - silver lining). I'm a candidate for DCISionRT with my consulting appointment this Thursday, which will help decide whether I undergo radiation therapy. Tomorrow I will remove the hypertape from the wounds and was wondering if I should use a moisturiser on the wound so early? I currently use CeraVe Smoothing Cream on my skin (recommended by a dermatologist as I have very dry skin). It's a small thing, but I'm wondering if other women experienced irritation from the bra in those first days/weeks when the hypertape is removed and the scars are exposed; and if so, how you dealt with it. Thanks so much. I love that this forum exists xAdvice please
Hi everyone, I was diagnosed with DCIS in December, following a regular mammogram. The core needle biopsy indicated that it was only 3mm. I had surgery the week before last to remove it, but unfortunately the pathology showed that it was actually 35mm, and a clear margin hadn’t been taken. I had an MRI on Friday, which I’m hoping will provide further information for the next surgery. My surgeon has indicated that I will lose the nipple, and suggested that I may consider a mastectomy with reconstruction. I have to say that this has taken me by surprise, because it’s nothing like I thought I was dealing with. I’m trying to wait for the MRI results before worrying too much, but I feel that I need to understand my options, and the future implications of partial versus full mastectomy. Has anyone else been in the same position? Are there any specific questions you suggest I ask at my appointment with my surgeon this week? Any suggestions will be appreciated!
Young mum diagnosed IDC and DCIS.
Hello! Im 37 and was recently diagnosed in November with early breast cancer - IDC (ER+, PR+, Her2-) and then following my surgery they also discovered DCIS. Plan is chemotherapy starting tomorrow and then mastectomy/recon 4-6 weeks post surgery! Looking for advice on: 1. What to take with me to chemotherapy tomorrow (will be there approx 5 hours as will be trying scalp cooling). Also what do people wear when using ice gloves/boots/cold cap? 2. Any advice on TC chemo and how you tolerated it (I’m doing 4 cycles). 3. Any tips on managing chemotherapy with 3 children aged between 3-7yrs and a husband who works long hours but very supportive. Thanks so much!High Grade DCIS
Hello all, fortunately after listening to a podcast this morning, I have found this site, thank goodness! Due to having dense breast tissue, I believe my DCIS has been missed previously, only MPO, but with my nipple showing signs of inversion from February 2023, and sporadic nipple leakage since then, I've had mammograms and ultrasound, plus saw a specialist in April 2024 but no diagnosis, no sign of a problem, until November 24. Ultrasound found a lump behind my nipple, however MRI has found a 7cm x 3 cm x 2 cm mass! What was to be a small lumpectomy is now going to be a Mastectomy, and I am in shock. I've had 4 biopsies now and all show DCIS, will have lymph nodes biopsied at time of surgery to check I'm clear, which I'm hoping for. I was originally under Dr Chris Pyke in Brisbane but he is retiring, and has referred me to Dr Emma Clarkson, at Mater, has anyone experienced her before? I'm not having another consultation until Jan 6th, and am feeling that I've had this diagnosis and been left to deal with it without any advice of communication, is this usual? I suppose that's why I'm here, I am looking for support. I've just been told I'm to lose a breast, and my GP actually said, you didn't have breasts before you were 11, you'll get used to not having them!! WTF!! I said to her, I have had my breasts for 45 years, I'd rather keep them! I want to scream!! Thanks for listening, I do understand there are so many in a worse position than me, I really do. I appreciate you being here and sharing your stories, advice and ears. Xx. Paula
Recovering from DCIS grade 3 double mastectomy
Hi Everyone, Just wanted to introudce myself & tell my story. I am 52 & recovering from a bilateral nipple sparing mastectomy & immediate implant recon & right sentinel node surgery. I was diagnosed with DCIS grade 3 (right breast) on 7th November. There is a history of breast cancer in my family (my Mum is a breast cancer survivor, her younger sister and her Mum were both in their early 40's when they passed away from breast cancer. My Dad's sister also passed away from breast cancer. At my initial appointment with the surgeon, he said he would usually do a lumpectomy for this however with my family history he recommended I consider a double mastectomy. It was a no brainer for me - I had always had in the back of my mind I'd request a double mastectomy if I was ever diagnosed with breast cancer however I had always planned to go 'flat'. The surgeon was thorough with his information on 'flat' -v- implant recon and I chose recon, much to my surprise. I had the surgery on 20th Nov. Mastectomy and recon went well. I was due to be discharged on the 24th however the evening of the 23rd, my left breast was rock hard and it had moved. The nurses called the surgeon and he arrived within 10 mins, took one look at my breast and advised I'd need immediate surgery as the nipple was dying. Turns out I had a massive haematoma that caused havoc to the implant so he had to pull it out, clean it and re-do it. The nipple survived!. After the mastectomy, everything was sent to pathology and surprisingly, they found another lot of cancer on the other side of my right breast that was larger than the initial cancer but it had not shown up on the MRI, mammogram or u/sound and was also a grade 3 aggressive. Thankfully my node result came back clear and the surgeon said because I chose the double mastectomy, I would not require any treatment. Recovery has been slow but I am making sure I follow exactly what the surgeon says as to what I can / can't do because I am terrified of something going wrong again. I know how fortunate I am as so many of you are having to endure treatment and at times I feel guilty that I have come out of this so 'easy' (if that makes sense??).DCIS - normal feelings?
Hi everyone, I was diagnosed in April this year with non invasive DCIS. I had surgery to remove growth, the radiation which finished in August. I worked mostly through the surgery and radiation treatment. But now I am feeling like I am having a breakdown. I am so angry and emotional and this is not me. I am post menopause (I went through early menopause due to surgery to remove an ovary) and I not on any hormone treatment. Is this “normal” to feel angry and emotional? I am seeing a psychologist. But I feel like my whole world has changed and no one quite understands or get what I have gone / man going through. Since April I have had only one week where I have had no medical appointments. I am completely drained. And guidance greatly appreciated. Xo
DCIS
Hi everyone, I am new to this forum - and any forum really - I have a horror of any sort of social media. But I am struggling so badly emotionally right now. I have been diagnosed with extensive DCIS in my left breast - 60mm high grade (grade 3) with comodo necrosis - confirmed via lumpectomy surgery. Another 5mm high grade DCIS found under the left nipple in a separate nipple delay surgery. They have also found focal LCIS as part of the lumpectomy pathology. I still do not have clear margins. DCIS has been classified as ER/PR- and HER2+. Family history - my mother was diagnosed with breast cancer at age 44 and died at age 47. Youngest sister diagnosed at age 42 (triple positive type) and underwent double mastectomy and chemo. She is still thankfully NED 8-9 years later. I have one sister left who has no diagnosis (as yet). My mother and all three of us daughters have been noted to have dense breast tissue. I am 53 years old however given the extensive size of this lesion and looking back at some of the mammograms which did show mild calcifications several years ago- I expect this has been growing since my late 40's (if not earlier). The mammogram only showed a 15mm area calcifications, so the bulk of this DCIS lesion did not ever show on imaging. My sister underwent genetic testing at the time of her diagnosis which did not show any known genetic mutation. However, geneticist does believe there is likely some genetic link due to the very young age of both my mother and my sister at diagnosis. I will be having genetic testing at some stage as my sister's testing was 8-9 years ago now. Breast surgeon has now recommended mastectomy of the left breast including removal of the left nipple due to involvement in the DCIS lesion. He has said that I could reasonably argue "both ways" with regards to my right breast (i.e. there is an argument to take both breasts given family history etc. However, could also make an argument to keep the right breast and monitor. So it's my decision. I have (at this stage) decided to have a double mastectomy with Diep Flap reconstruction. The surgery is scheduled for 10th July. Part of my decision to go bilateral is because the diep flap is a "one chance only" surgery. I also have already had some biopsies on the right breast (benign to date) but am aware LCIS is generally bilateral and may indicate a higher ongoing risk to the right side. It's also a very big surgery and I do not want to have to ever face this again if possible. I am so so terrified of the surgery. Here's the main thing - I am absolutely shattered about losing my breasts. It seems such a radical surgery for a non-life threatening diagnosis. I am in so much mental and emotional pain and I have been having a LOT of suicidal ideation (although I don't think I would act on it - I just literally don't want to wake up most days). I can't bear the thought of having no feeling in my chest. I am so worried about possible ongoing permanent nerve pain and post mastectomy pain syndrome and "iron bra" syndrome. My breasts are the ONLY part of my body that I actually like. I already know that I will have massive body image issues and loss of confidence after this. I am incredibly depressed. I am seeing a psychologist (Dr Charlotte Tottman actually - she's so wonderful). I am trying very hard to deal with all this. I feel like I will be so judged that is my key pain when so many others would do anything to change places with me and my diagnosis. I am so very aware of that and it's very hard to be honest about this because I feel like I should be focussing on the health part and not my physical loss. It's not that I'm not very grateful that this was found so early and I should be able to avoid all the awful treatments (radiation/chemo etc) and even more so, that my life is not at risk like so many others. I just can't believe I still have to lose my breasts and nipples with this very early diagnosis. I can't believe it. I'm also really struggling with some health professionals (including my breast surgeon and plastic surgeon) calling DCIS "pre cancer" or saying it's not "real" cancer. I just can't bear it. I can deal with calling this bloody thing Stage 0 breast cancer or pre-invasive cancer. But to hear health professionals say DCIS is not even cancer when I have to suffer such a radical lifechanging permanent surgery - it feels like such a slap in the face. It also makes it SO much harder to accept this recommended surgical treatment. If it's not 'real' cancer, I'll keep my breasts thanks very much. Why do they do this? I cannot understand it - if it's to keep us "calm" - I can deal without being patronised?? So sorry for the long post. I don't know what to do with myself.