Still struggling with the word pre-cancer after DCIS mastectomy
I was diagnosed with low grade DCIS in my right breast in Nov 2019 and had a mastectomy in Jan 2020. I am 38 years old. I saw 2 specialist and both recommended a mastectomy because I am small breasted. Had an expander put in, awaiting for reconstructive surgery which has been postponed due to covid19. I am now clear without needing further treatment. My surgeon/breast care nurse/GP all refer to DCIS as pre-cancer and I struggle with this immensely because I need to feel that the choice I had made was justified and worth it. I lost my breast, it may be small but it was mine. This is not just about losing my womanhood, I felt I lost a part of me that made up the person I know myself to be. Because of this word I don't feel like I have saved my life, I didn't even have cancer. I know I should be grateful that I didn't have to go through radiation or chemotherapy or take any meds but to me a mastectomy is a very drastic treatment. How do you even explain it to other people? Nobody knows what DCIS is unless they have it, do I say I had pre-cancer? Is it wrong to say I had breast cancer? 5 months on and this is still keeping me from moving forward. At yesterday's Psychological Impacts webcast, someone asked Dr Tottman this very question and I was basically yelling at the screen "this is exactly how I feel!" So I now know there are others who are just like me. I hope to hear your stories and thoughts about how you are dealing with this particular issue.
Good-bye boob photos - your ideas?
I've spent a month wrestling with the information about DCIS, and my decisions about what to do next. Starting with a flyer for the BCNA, given to me by BreastScreen NSW, that seemed to indicate that DCIS is not straight-up, bald-faced cancer. I spent the first 2 weeks after diagnosis trying to get my head around concepts and terminology. Is it life-threatening? No. Does it mean you're more likely to get invasive cancer at some point? Yes. Can you sit on it, and see what happens? Yes, if you like playing Russian roulette. The next 2 weeks making appointments with specialists... A breast surgeon: get it out. A plastic surgeon: we have marvellous folding tables and can recreate your boob from other bits of your body. For my A-B cup delights? No thanks, way too much hassle. A doctor who has had a bilateral mastectomy: you don't want to deal with radiotherapy and chemo, get it out. My doctor friend who uses complementary therapy: it's about survival, and you're young with a lot of stressors in your life, get it out. A breast surgeon and top-level researcher: we can't force you to do anything but getting it out is the best idea. And so the expert consensus, even though I feel fine, I am potentially fine, and I may remain potentially fine, is that I should cut out my very small boob - including the 6.1cm of low-grade DCIS - and get on with it. So that is what I've lined up for later this month, even though a vain and fatalistic version of myself is writhing around inside me, clammering for attention so I can hear it scream STOP. On the pro-mastectomy side: - I'm small-breasted so this is not such a big deal in terms of lop-sidedness - Survival, maybe - I can take up archery with fewer complications - Maybe it's time to go #braless4ever On the con side: - I'm cutting out a boob - Scars, pain and zombie-time - Dressing myself might be a bit of a nuisance So you see, there are more pros. Anyway, as part of saying goodbye to my booby, I've planned a pre-surgery photoshoot. Candid, B&W, naturalistic in my home. Does anyone have any ideas for poses, props and backgrounds that would work? Or good places to look for inspiration? I've tried Google-Imaging but I don't like to spend too much of my life scrolling through porn sites... which is what happens when you search terms like topless, semi-nude, female body art. B) :s Thanks in advance!
Stage 0 (DCIS) with widespread microcalcifications
Hi, am very new and slowly (or quickly?) getting my head around my diagnosis and the terminology. It's like learning a new language which is probably the most pleasant thing I can say about this experience so far. I have widespread clusters of microcalfications across one breast. Three different biopsies have established that at least 2 of those clusters at atypia hyperplasia and at least 1 is low/intermediate grade DCIS. It's all very manageable and treatable however they clearly cannot biopsy all of the clusters as there'll be nothing left of my breast and an MRI has not provided any information one way or antoher on the risks or status of the other clusters. My surgeon was originally thinking of advising on a mastectomy given the widespread nature however, given the indeterminate status of many of the clusters she is concerned that this might be too drastic a step at this stage. She has come up with an alternative - wide local excision - which involves removing a wide section of my outer right breast containing the 3 sampled/confirmed areas, then testing the edges of the sample to assess whether there are any cells of concern at the edges. If no suspicious cells in the margins then they will proceed with a perforated flap reconstruction and will screen the remaining clusters annually. All sounds very sensible, however... ...I am afraid that testing will reveal further suspicious cells at the margins and I will end up with a mastectomy in any event. Equally, I may not. I would be keen to hear from anyone who's had a similar diagnosis and how it fared for you. If you 'only' had the wide local excision and microcalc clusters were left behind how have these clusters behaved since your surgery? I realise everyone is different I am just looking for strength, comfort and knowledge from hearing others' (similar) stories. Thank you xDCIS
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.
Tired
Is it just a me thing? I feel since being diagnosed I am 'weary/tired'. At this point I am still working until I find out about treatment/surgery, and then will work out my leave. And I have been getting my ducks in a row. Feels strange from switching from being fine to being diagnosed. Life changes overnight.
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.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.
