DCIS - Breast marker missed in initial surgery
Hello, I was recently diagnosed with intermediate grade DCIS left breast presenting as a stellate lesion (1.4cm), apparently the usual presentation is calcifications. I had a wide local incision just before Christmas to have it removed. The surgery went well and I was very happy with the incision/surgery (done by a private breast cancer specialist). The scans I had before surgery were mammogram, ultrasound and an MRI. A breast marker was implanted at the time of the biopsy with Breast Screen. I went back to see the specialist last week and the pathology was showing that there was no breast marker in the tissue removed and also no DCIS in the pathology sample. He sent me for another mammogram, that was very uncomfortable I must say on a breast that has just had surgery! Long story short the recent mammogram showed that the breast marker and DCIS wasn't removed at surgery it had been missed, I'm booked in for the exact same procedure all over again this Thursday. I'm so upset that I have to go through another general and have the surgery all over again, plus I've been a mess just waiting for the results the first time around. That's been the worst part of this whole journey so far. I've spoken to the specialist about my concerns but I'm not really satisfied with his explanation. Also this is my second time dealing with cancer 23 years ago I went through surgery/chemotherapy and had to have an emergency hysterectomy. Going through this journey all over again is bringing up a lot of bad memories. Has anyone else been in this situation? I'm just feeling so deflated atm.
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!
Recurrence
Hi There, I'm posting my story on here as I am feeling lost - my family and friends are really supportive but I just don't feel understood. In 2015 I was diagnosed with low grade DCIS - my treatment was mastectomy, SNB with reconstruction in February 2016, followed by a prophylactic mastectomy of my remaining breast in November the same year. Based on my pathology and treatment, recurrence was a low risk. However last month, when I had my annual appointment I had a FNA on a lump which I was told last year was a cyst. Pathology suggested malignant cells so I was rushed in for scans - fortunately, there were no metastisis but I had surgery to further excise the tumors and another SNB. 3 days after my surgery I was readmitted for a second operation as there were 2 tumors identified (8 and 5 mm respectively). The second operation removed all of my skin (first mastectomy was skin sparing) and revealed a 3rd tumor, 4mm. Pathology was ER/PR+, Her-, micro mets to one lymph node. I will undergo radiotherapy but no chemo. I also found out yesterday that my bone scan revealed a benign hyperostosis on my skull and my surgeon has told me she isn't worried but wants a CT scan in a few months to check. After 3 weeks of scans, testing and surguries, and the additional worry now that the benign hyperostosis is actually a metastasis I am just at a low - for a disease that I thought I had treated 3 years ago I'm now left wondering (obsessing) about another recurrence. I just feel like I'm being denied a life but really I should be out there enjoying every minute of it. I have 2 gorgeous boys and a wonderful husband and it is so hard to see them deal with the events of the past 3 weeks. My surgeon has said that she hasn't seen a case like mine before so I feel quite isolated and scared. I've always been so healthy and now I feel like this will never end.Very Hopeful
Diagnosed DCIS 10th August, I saw a surgeon yesterday and have now booked the hospital for the 3rd of September. I have decided to only have the involved milk ducts removed. Hopefully there will be a clear line around and I will not have to have radiation. The surgeon was talking about breast reconstruction on the day as well, I have decided to only have the cancer removed as everything else is in the too hard basket at the moment as I have had two major surgeries in the past 11 months. Well wishes to all those in the same situation as myself.:)
DCIS question: Does a core needle biopsy break the duct and cause the cancer to spread?
Last Tuesday I was diagnosed with Ductal Carcinoma In Situ (DCIS) breast cancer in my left breast. I have had two core needle biopsies on my left and right breast. I'm still waiting for the results from the biopsy on my right breast. I have an appointment with the breast surgeon tomorrow (Monday). I'm worried that the biopsies have damaged the duct wall and caused the cancer to spill out of the duct into the breast. Does a core needle biopsy break the duct and cause the cancer to spread? The radiologist who performed the second biopsy was very rough, and he inserted the needle at least six times into my breast (there are six holes/scars in my breast). I live in Victoria and I'm a public patient. My local hospital is terrible and I don't feel supported by the breast surgeon. She is very unprofessional. I'm afraid that I don't have the same chance of survival as a private patient who can afford to see a breast surgeon of their choice. I'm terrified that the cancer has spread because of the biopsies.
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.
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.
