Is "Brian" the new Farnham??
So.......I thought I had given my lump "Brian" a beautiful farewell concert, complete with audience, drinks and a hearty "F...k Off Brian" back in March. At that stage, I was cruising through the Stage 1, grade 3 euphoria of "You got this Girl!" Doctor will do a Lumpectomy one morning, rip out a few nodes, dose of radiation and some pills just in case. Oh yeah, I was still scared, but I was being told - "we" got this!" "Brian" has left the building!!! So......the discovery of a 85mm lump of "Brian" and 4 positive nodes and 1 pissed off node, caused panic and it is now Mastectomy time. The family and I throw a "Fast and Furious" Movie Marathon as a Farewell to "Lefty". Receive a beautiful Love Note from my oldest daughter thanking "Lefty" for being an amazing breast and the Husband gets the final touch.. Rocked up for surgery on 6th May -it goes really well. Up and about that afternoon walking with the drip in my room, that I share with a 72 year old Lady who "Screams" in her sleep, calls out my name nonstop, refuses to eat and sneaks off for cigarette breaks. I wanted to go home just so i could actually sleep and rest!!! Anyway, 2 days after surgery, Dr. (I am God) Bolshy turns up with his entourage of Junior Registrars and says - "you can go home and by the way you are now Stage 3, Grade 3 and walks off." W.T.F. Did you just say? I had to chase this Bastard down the hallway and make him come back to my room!!!!!!!!!!!!! he refuses to tell me anymore other than you have jumped from Stage 1 to Stage 3 - the surgical team will tell you. I met up with the Surgical team last week and all hell breaks loose! "Brian" made a comeback!!! In fact "Brian" had been a busy little Lead Singer - shacking up with as many "Cell Groupies" as he could find the energy for and also shacked up with a Node (making 5 positive now and 1 annoyed) while spreading the love around! All he needed was 3 weeks of love action and he had created another 2mm aggressive growing "lump" near the original site where he was sliced/diced from the show and left his love juice in the form of 18mm of "Baby growing cancer cells" in my milk ducts. I am literally so shocked, I am unable to talk, comprehend or make any sense of what i was being told. What happened to "We got this??" Even though I am told "Brian is gone" and all is well - I am wondering if "Brian" is going to do a Farnsy and keep on making a comeback tour??? Anyway, IF Brian has left any love juice in my body or is thinking of making a 'Come Back" tour - He is in for a rude shock! I have a new band signed up to play in my body - SHE is called "Chemo and The Chemicals".....playing Centre Stage for the next 5 months in LOIS TOWN.....!! (lol) My new Motto: Find positivity in the little things and Use your words to defeat adversaries! Big Hugs Lois......who is not a Doctor's doormat.
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.
Newly diagnosed - double mastectomy
Hello everyone, I'm new on here and sending hugs as we all need them <3. Firstly I am not great on computers but have read the helpful notes about posting so here goes. I had a recall from my mammogram and as this had happened before I was not really worried and thought it would be a false alarm. Then when being examined I was told that I needed a core biopsy and again I thought that they would find nothing and it would be ok. It wasn't ok and I went to our local breast clinic where I was told I had DCIS. As this was precancerous I thought this would not be too much of a worry. I was told I would need a lumpectomy and five weeks ago had the operation. Small scar not too bad, hoped that was that. No, I got a call from the surgeon the following Tuesday to say that they had found cancer in the margins and had not taken enough out and so wanted to operate again in 3 days, opening up the same scar but making it larger to get it all out. Well to cut a long story short, the lab result from the second lumpectomy threw up something "unexpected" which means that the only sure way to get rid of the cancer is to do a double mastectomy as the other breast is probably a timebomb too. Still reeling from the shock of it all to be honest and feel like I am in some parallel world where I am in a nightmare but everything else is normal. I am dreading the mastectomy but also know it's the best thing to do. It's all a bit of a whirlwind isn't it and trying to be brave and positive to family. I am going to watch the BCNA Webcast this coming Wednesday (the kids have explained what it is) which I think will be very helpful. Thank you for reading and I'm glad this online meeting place exists.
Webcast: The Role of Radiotherapy in the Treatment of DCIS and Early Breast Cancer
Hello everyone, BCNA are holding a webcast on Thursday 9 December, 7:00 pm – 8:00 pm AEDT on The Role of Radiotherapy in the Treatment of DCIS and Early Breast Cancer. Some people diagnosed with breast cancer may be recommended radiotherapy as part of their treatment. Radiotherapy is usually recommended after breast conserving surgery, and sometimes after mastectomy, to reduce the chance of DCIS and early breast cancer returning in the affected breast. Radiotherapy is carefully planned to make sure that you receive the greatest benefit from the treatment and have limited side effects. In this webcast you’ll hear from specialist Radiation Oncologist at the Northern Sydney Cancer Centre, Associate Professor Gillian Lamoury, Oncology Nurse at Genesis Care, Sophie Andrews and BCNA consumer Susan Manks. Susan will share her experience of radiotherapy after being diagnosed in 2019. We will explore the use for radiotherapy including the benefits for the treatment of DCIS and early breast cancer, current and emerging techniques of radiotherapy delivery, the planning process and the factors that influence delivery, side effects and ways to manage them, follow up care and the costs associated with treatment. To register, please follow this link, https://kapara.rdbk.com.au/landers/f19ef8.html ; Event Details: When: Thursday, December 9, 2021 What Time: 07:00 PM AEDT - 08:00 PM AEDT Local Times: - WA: 04:00 PM - NT: 05:30 PM - SA: 06:30 PM - QLD: 06:00 PM - ACT, NSW, TAS, VIC: 07:00 PM
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
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!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.....
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.
