Reconstruction not what I was told to expect.
I’m near the end after a double mastectomy 2 and a half years ago with failed reconstruction. 10 operations later and I have died flap reconstruction 4 or 5 rounds of fat grafting (I’ve lost count), two lots of silicon implants and I don’t look normal at all. My upper chest is lumpy and concave and looks a bit like I’ve had a very bad, uneven boob job. I’m really struggling. I’m very badly scared from all the skin and tissue necrosis and lost so much skin on the side that had no DCIS ( got both done as knew I wouldn’t cope if I didn’t look ok), that they had to leave the skin paddle (skin from my stomach) so even more scares. on top of that the mesh has failed twice so my stomach is very bloated and often painful. My legs are covered in cellulite and uneven with hollowed out bits. I don’t recognise my body and I feel hideous. My surgeon keeps saying how good I look considering where I’ve come from. I know I should be grateful to be alive. I know I should be grateful it could have been a lot worse. I feel very alone. I’ve not found anyone who’s gone through something like this. Are my expectations unrealistic? My appearance was my armour and now it’s gone. This started when I was 45, just before my daughter’s 7th birthday. She keeps asking if she will have to have this done. Reality is it’s more aggressive and earlier every generation in my family and seems to affect almost all the women. I can’t even show her it will be ok because I’m not physically or mentally ok. Sorry for the long ramble, just need support.
First anniversary
I am new to this group... can't beleive it has taken me 12months to find this platform. Possibly wasn't really looking. I was diagnosed with Invasive Duct Carcinoma (no special type) Grade 3, Hormone + HER2 - on the 1st of Nov 2022. I have had a lumpectomy, chemo, radiation, currently taking anastozole 1mg & a hystorectomy. No breast cancer or any cancer (except my sister) on either side of my family. I chose to do a gene test to see if there was genetic link between my younger sister's sarcoma diagnosis 8 years ago & my BC. Curiosity killed the cat and I have the BRCA 2 gene mutation. Unfortunately so does my sister. They are suggesting a bilateral mastectomy. I am unsure whether I should go flat or have reconstruction. I would love to hear how people have made this decision and how their surgeries went. Thank you for reading.
Looking for recommendations in Sydney
Hi all, I have some practical things that I’ve been struggling with and I figured I’m unlikely to be the first. I had a single mastectomy and auxiliary lymph node removal in November and have been having issues finding bras - I’m 35 so I’m looking for something with underwire and padding that also has a pocket for the prosthetic. No such bras seem to be available at the list of stores given to me by the breast care nurses. My scar goes across where the nipple would be rather than where an underwire sits so I’m still able to wear underwire comfortably and since my remaining breast is a DD going without underwire, padding and structured support isn’t my favourite. The berlei post surgical bra was fine for around the house but don’t work under a lot of my wardrobe and again, the support issue is a problem. I figured a good option was to get a couple of my favourite bras tailored to add the pocket. Problem is trying to find someone who can do that sort of work is proving very difficult. The one guy I found in balmain showed me a method that looks like it’ll damage the bra and not have a great result. So any recommendations would be amazing. Also looking for inner west lymphatic drainage massage recommendations (that don’t cost the earth). Any suggestions for how to minimise lymphadema risk and tricks and hints for getting used to it all would be much appreciated. My hope is for a reconstruction but my surgeon says that’s about two years away. Thank you so much katherine
Recent mastectomy and reconstruction
Hi all I want to let this forum know how I am going after my mastectomy and reconstruction with an implant. I was diagnosed with breast cancer in January. First lumpectomy in February with one lymph node removal. Great margins around cancer tumour and no evidence of cancer in lymph node. Great but still lots of DCIS in the margins. Second lumpectomy in March and unfortunately still DCIS in three spots on outer margins. I chose to have a mastectomy and reconstruction as I couldn’t stand the thought of this shit lurking. Sooo mastectomy and reconstruction with implant just over two weeks ago. Healing well and lucky enough to be able to have a nipple graft which appears to be healing well. No cancer around the nipple. Feels very weird to have an implant - tight and not natural but for all intents a boob as such. I have to praise my plastic surgeon who has done a great job in that look of my new boob is great and even better the nipple graft continues to heal well. Best news was pathology this last week which shows clear healthy margins beyond the DCIS and so no further treatment required. It is so surreal this process I have gone through and nothing but tears after pathology. This was the first time I actually felt that I had actually had cancer and the facade/strength I had been showing for the past 7 months collapsed. I am so aware that my journey has been easier than so many and I am forever grateful for that and so mindful this is not the story for so many…. I am also so grateful for the members who reached out in my scary days leading up to the mastectomy. I am sure there will be some sad times ahead as I mourn the loss of my breast but no where near as dark as pathology was good. Part of me is a little nervous as you know you might get good results but things can turn to shit in a nanosecond. Here’s to hoping things go from strength to strength. And so many thanks to my breast surgeon, plastic surgeon, breast care nurses, hospital staff and my friends and family. Covid also makes ever thing so scary and lonely. ❤️❤️❤️❤️❤️
Double Masectomy or radiation
Hi, I'm new to this forum, I'm 42 and was diagnosed with early breast cancer 7 weeks ago. Hormone +ve herceptin -ve I had a lumpectomy and sentinel node biopsy and am healing well. The nodes came back clear (yay what a relief) but the lumpectomy showed 2 additional smaller tumors that the original MRI didn't pick up. (I have dense breasts so Mammogram/ ultrasound didn't pick up anything). I've been having yearly MRI for 15 years. I have a family history of breast cancer, my mum and 2 aunties and possibly my grandmother. All diagnosed below 50. I don't have a breast cancer gene. I have to decide (quickly) either to go ahead with radiation or have a double masectomy to reduce my future risk. I had basically decided on masectomy but then the gene test came back clear and threw my decision making process into disarray. Has anyone on here, at high risk decided to have a double masectomy (with implant reconstruction) even when they didn't need it to treat their cancer? I'm wondering how you made your final decision? A few things holding me back from making the big decision, is the -numbness across my chest after the masectomy (did ladies find this hard to get used too)? - with the under muscle implants, did ladies find they caused any muscle weakness long term? I'm finding it a really hard decision. My mum fought hard to keep her breasts (and so far is still clear 18 years later) and I'm leaning towards the full masectomy, as I'm a single mum with a 4yo and the weight of another cancer weighs on me. Sorry for the long ramble 😁
Strange symptoms after mastectomy
OK I know this is a real thing because I searched it and found it described in a thread overseas. Ever since my mastectomy, I have had a very strange feeling every time I have a drink. Hot or cold it doesn't matter. Sometimes it's enough to take my breath away. Sometimes mild, sometimes almost painful. Nothing really to complain about but the strangest feeling! It sort of feels like a sudden rushing waterfall of ice water behind my ribs that washes down my chest on the side of the mastectomy. Has anyone else had anything similar?
Movement in arm
I had a bilateral mastectomy & axillary lymph node clearance 3 weeks ago. I’ve lost some movement in my arm & have numbness on the back of my arm. I’ve been doing the exercises the physio gave me while in hospital & was wondering how long it will take to get good movement back & if the numbness will go.Lumpectomy or Masectomy
I am nearly finished 16 weeks of chemo - 8 weeks of fortnight AC and then 8 weeks of Taxol. I am also Hert 2 so started Herceptin on 26th August every 3 weeks for 48 weeks. Due to have surgery in about 20 days. I had a 4-5 cms tumor left breast which has shrunk with chemo to 1cm and nothing in between and 1cm - which oncologist thinks could be 2 x 2.5cms tumor joined together - wont know till surgery. Also had spread to Lymphn nodes so will take out about 2/3 which is 20 out of 30 lymph nodes. Oestrogen + 30% Progesterone - and Her 2 positive. Invasive ductal cancer grade 3. Options now are (1) lumpectomy with reduction (2) Bilateral mastectomy or (3) Double Masectomy (all with lymph node removal). The first option could be do lumpectomy with margin and lymph nodes and go back following week for reduction in that left breast and if pathology shows more needs to be done could do mastectomy week after? Any recommendations or thoughts?