DCIS and. travel insurance
Hi all, after another DCIS bout and single mastectomy earlier this year I’m planning on a bit of travel. When trying to fill in travel insurance health questionnaires has anyone experience with what you put in for DCIS. There are a number of choices when you put in breast. Thanks in advance. Jen
DCIS - 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.
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
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.
Hello and goldilocks mastectomy
Hi all, I was diagnosed with extensive DCIS in my right breast last month, after my first ever mammogram. I’m 47, have 3 daughters (12, 9 and 4) and live in a rural area. 48 hrs after my diagnosis I travelled to Canberra to meet my surgeon who referred me on for an MRI as well as PET and CT scans. I have a small invasive cancer in the right breast, but at this stage the rest of my body plus lymph nodes appear clear. I didn’t want an implant or a prosthesis, so my surgeon has recommended a double mastectomy (for risk minimisation and symmetry) using the goldilocks technique for immediate reconstruction. I’m a DD cup and very active, so the thought of smaller boobs is actually quite appealing, however I have no idea how small they will actually be. Has anyone else on here been through or been recommended this procedure?
DCIS and mastectomy
Grateful for the site but wish it didn’t have a need to exist❤️ As I sat in my nicely warmed bath robe waiting for my second round of tests at Breastscreen, I was completely unprepared for an actual positive result the following week, and even less prepared for the treatment recommendation. I don’t know what I thought treatment would look like but I certainly was not prepared for such an aggressive option. I am incredibly grateful that it has been found early and there are a lot of people having a much worse experience - I know this - but honestly the shock of being faced with losing my breast is overwhelming at times.
DCIS - Mastectomy or Lumpectomy
Hi everyone, - well here I am.... joining this amazing group of supportive women and wishing I wasn't here!! I have just been diagnosed with DCIS (2) in one breast. My mum and her mum both had BC, so there is a history. I am seeing my doctor tomorrow to get a referral for MRI and to a breast surgeon. At this stage, it appears (advice from the breast surgeon at Breast Screen) is for either a lumpectomy with radiotherapy or a mastectomy. The tests so far indicate that it is contained... I can only hope that it the case and there is nothing else lurking that has not yet been identified. (deep down though, I kinda feel like there may be more to it!). I am researching as much as I can to help make this decision. I feel like going down the mastectomy road, but of course that has its own implications. Also, do I go flat or have reconstruction. Do i bite the bullet and have a double?? I so totally don't understand the ramifications, side effects and both physical and mental emotions! So much to absorb and take in. I worry about how to choose a breast surgeon who will be able to guide me. How soon do I need to get the surgery and how long will it take for me to recover??? I am frantically reading through all your posts and getting inspiration from everyone who has walked this road before me! I know that no-one can provide me with answers, but I guess just getting it out into this forum will help me to choose the path forward. Thanks in advance to everyone who has already shared their stories. Compared to many, my issues are rather insignificant! Cheers MelMacFirst 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.Diep procedure feedback
Hello to the club I never wanted to join! :).. Recently diagnosed with DCIS over a large area so a mastectomy is necessary (skin and nipple saving). I am contemplating a DIEP procedure and would love to hear of anyone particularly on the sunshine coast qld who has undergone this surgery in the past few years (as the Surgeon may be the one I have been referred to) . If I have this they will not remove the muscle of the abdomen but just skin and fat. I am a horse rider and concerned about the time for recovery. My plastic surgeon advised I can ride again 6 weeks out from surgery and I am keen to hear from people who have had this procedure what their journey was like and how quickly they returned to `normal' active lifestyle choices.
