Urgent Surgery advice
Hi everyone. I’m in need of some urgent advice about breast surgery options. I have been given two different opinions by two different surgeons and I need to decide ASAP, which to go with (surgery April 16th). I’m 36, with grade 2 & grade 1 invasive ductal carcinoma 2-3 lumps in a line at 10 O’clock(in line with underarm), ranging over a 5cm area, no children/Small C cup. Dr Cindy Mak initially recommended a nipple sparing right mastectomy, with immediate implant and radiation. I was afraid of capsular contracture because I heal poorly/radiation. She now wants to try removal of the cancer in one large lumpectomy (scar from under arm, along side of breast). Then a second surgery to perform a LICAP flap reconstruction (I think they take a flap of fat from under the arm to fill the void?). I’ve lost weight over the last few weeks so I don’t have a huge amount of fat. She said I’ll be at least one cup size smaller and my nipple may be off centre. She could try fat transfer to help at a later date. Dr Elisabeth Rippy suggested that in trying to keep my breast, I may end up with a less desirable shape/aesthetic result. She recommended a full nipple sparing mastectomy (scar hidden under breast fold) with an expander. Then radiation, followed by a second surgery for implant placement and fat transfer. I was wondering if, given your decision again, you’d try to keep your breast tissue at all costs? And if unhappy with the size and shape, have a breast implant/augmentation at a later date? Is it even possible to have a breast implant after LICAP and breast radiation? Does radiation change the texture of a natural breast so much that an implant is impossible afterwards? Or because the cancer is so large, is a mastectomy safer? I’ve read that your initial surgery & shaping is very important in relation to future aesthetic outcomes. I really don’t know how to make a decision this important with so little information. I would really love any advice (or even other surgeon suggestions in Sydney, for a final opinion). X
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.
Covid19 and breast cancer
It's been two years since I had a baseline bone density scan (DEXA) and I had a date booked for my next one. They sent me a text message a couple of weeks ago to say it's has been indefinitely postponed due to Covid19. After finally working up the strength to sort out my revision and nipple surgery I was booked in for 24th April. I haven't heard boo from the hospital (private) or the surgeon but it won't be going ahead. They're saying the coronavirus peak here will be late April to May. I'm not concerned about either of these things, they can easily wait. But if it's happening to me it must be happening to others, and it got me to thinking about what it would be liked being diagnosed and starting treatment at this time. My heart goes out to all who are in this position. Today I was scrolling through Instagram and saw this post from a BS here in Melbourne: This situation we're all in is so dynamic and fast moving. I know my anxiety has risen. I hope everyone is doing OK. Big hug to you all. K xox
Recommendations - Brisbane surgeons
Hi everyone, I am not actually sure if I am allowed to ask this or not (admin please delete if not appropriate) but I was hoping to get some recommendations (or otherwise) of Breast reconstruction surgeons in Brisbane, ideally who operate at The Wesley. I have seen 3 already and am confused and indecisive. I think I will be having a TRAM flat as I had extensive radiation. Thanks so much! Claire
Reconstruction surgery
Hi everyone Its been a while since i have been here a rough couple of months. Lost my mum and aunty to cancer and was diagnosed myself for the second time,but the reason im here is to ask for some feedback. I am currently sitting on a committee that are creating education materials for reconstruction surgery and want to know what you the consumer would want ro see included in this material. Things like the procedure, cost ect. From a consumer point of view what is needed in this material? Thanks in advance for your input. DiPublic or Private (please help!!)
After diagnosis of High Grade DCIS with Mastectomy required. My husband and I are both on the aged pension, and have struggled to maintain private health insurance. I live in a rural area which has no access to reconstruction surgery in the private or public system so I need to go to Melbourne. What worries me a lot is the gap fees if I have to go private because of the need to act fairly quickly. I would love to chat with anyone that can help me with information on how it all works and any idea of the cost process. Thanks
To remove or not to remove..... that is the question
Hi all, I am 2 years post diagnosis. Left Mastectomy, Chemo, Radiation, Oophorectomy and taking Exemestane. I looking for advice from anyone who decided after treatment was finished instead of a reconstruction have the other breast removed for "evenness". I believe that the reconstructive surgery would be a pretty long operation as I don't have enough skin to simply slip a implant in. I just think it would be simpler to remove the other breast but any advice on either the pros or cons of this option would be greatly appreciated.
plastic surgeon recommendations tasmania
Hi, I have just been advised to have a double masectomy and my ovaries removed. I will be having reconstructive surgery at the same time as the masectomy. Can anyone recommend a good breast reconstruction surgeon in Tasmania, as there are only a few to choose from.Update
Hi all, It's been a while since I post something. A lot has occurred since the last time I post something. Unfortunately, I was not doing well with the weekly chemo and Immunotherapy treatment. Spend all Easter break in hospital due to infection, I became hypersensitive to needles and got a PICC Line inserted which lasted only for a few weeks as it got infected, and it had to be removed, my oncologist decided to insert a Port (which has been the best thing). I also became sensitive to all the dressing that they used on me, my skin was breaking down. I ended up in ICU due to my blood pressure going low. It seemed that after my weekly treatment my husband had to rush me to the emergency department in the evening due to high temperature and rapid heart rate. This went on for 3 weeks in May, my last admission was the worse one, my temperature wouldn't go down, ended up being septicemia, required blood transfusion, my liver functions weren't great at all. The levels were tripled. My oncologist started getting worried and ceased the chemo and immunotherapy treatment and decided to bring the surgery forward. Unfortunately, the lump in my breast hadn't decrease in size as the surgeon expected and the lymph node that was cancerous had increase in size. My plan was to have both breasts removed and then do the reconstruction at the same time, due to my liver function and current health status, my surgeon and oncologist decided to just remove the right breast and have the other breast remove and reconstruction done at a later time. I was deflated with that news, eventually I accepted it. I had my mastectomy to my right breast on May 31st. He also removed 10 Lymph Nodes (Which only one of them had the cancer). Three weeks ago, I started Radiation, and I have completed this on Tuesday (13/08/24). I see my oncologist next Tuesday (20/08/24) and he is going to restart me back on chemo, but the oral form. I am not sure for how long and if the side effects for the oral chemo is the same as the IV one. My plastic surgeon has placed me on waiting list at the Royal Melbourne Hospital for the surgery/reconstruction. I have accepted the way I look now.
