Sharing is caring. Thanks ladies
Hi ladies. Thank you for sharing your experiences, ups and downs. I get online and just read a few posts every now and then and it really is encouraging and gives me a good laugh at times. My surgery is in 11 days now...thank goodness, the waiting is the hardest. I'm having a bilateral mastectomy and I'm actually fine with it, especially after joining this group and reading your experiences. You are all wonderful.
Grade 3 Triple Negative
hi!! I just wanted to say my first hello and what an amazing place this is to come for loads of wonderful advice and info!! I was diagnosed on 6th Nov with Grade 3 Triple Negative IDC and am having a double mastectomy with reconstruction next wed 4th Dec. I’m a mum of 3 (19,16 & 7) and had only just turned 40 when I experienced a sharp pain in my breast and went to have it checked. No staging as of yet, I had one swollen lymph node biopsied which came back clear and CT was clear apart from pre existing liver hemangiomas (just something else to add to the mix) but still waiting on bone scan results.........if that isn’t the most anxiety endusing thing on the planet I don’t know what is, Ive been hyper sensitive to every ache and pain I get!! Chemo is planned for the new year. Anxious but eager to get into it, all the waiting is the worst 😣
New and wanting to say hi 🙋♀️
Hi 🙋♀️ I have trolled on here since being diagnosed triple positive in October 2020! I had a bilateral mastectomy and left axillary clearance in November in which they found a 2nd lesion! so I have invasive lobular and ductal 🤦🏼♀️ Anyway I started AC chemo last Friday fortnightly for 8 weeks then taxol for 12 weeks. 25 doses of radiation and herceptin 3 weekly for 12 months. Then all going well 10 years of endocrine treatment! I just wanted to say Thankyou I have found this network a wealth of information and feel so grateful 🥰 Of course I knew nothing when I first started and felt like a deer in the headlights so to speak. 🦌
Second time around
Hello.... I was diagnosed with DCIS Invasive grade 2 breast cancer in my left breast in Nov 2009 when I was 43yo after been sent for a mammogram because I had never had one before. I had a lumpectomy and a sentinel nobe biopsy. A dot of inconvenience was found in one of the lymph nodes which led to a second surgery and an ancillary clearance removing a further 24 lymph nodes. This surgery had an ‘all clear’ result but I needed 4 rounds of chemo as a precaution and then 6 weeks of radiation. I then took Tamoxifen for 5 years as the cancer was hormone receptor positive. I have continued with my annual mammograms and ultrasound, have needed a couple of fine needle biopsies but generally had a pretty good run the past 11 years. Until Nov 2020 😢 my routine checkup resulted in a vacuum assisted core biopsy of my right breast and the diagnosis DCIS. F@@k her we go again! Abnormal cells were located as they had calcified so could be seen on imaging! How lucky was I? If the cells didn’t die, would have been a whole lot different in 12 months time as My surgeon requested that I have a MRI to check for anything else. An area of 3-4cms was located which meant the surgical margins were increased to get a ‘clear result’. I am now going through the motions of deciding what to do next? Can opt to just do radiation again and then roll the dice a third time and see what the future brings? But I am 99.9% decided to have a bilateral mastectomy.. I took the genetic test for BRCA 1/2 mutation...results were negative, so it’s just me 😜 I also found out from my surgeon that once you have had radiation on your breast, you can’t have it again so if it was in my left beast, I would have had it take off anyway. With radiation alone, the risk of breast cancer coming back would be 20% versus just 1% after having a mastectomy.. In my head it’s a no brainer but I am really starting to grieve about my decision and they haven’t even gone yet! I have spoken to a private reconstructive plastic surgeon and I would be eligible for a ‘Tram Flap’ recon which seemed quite appealing in the start as I would be getting a tummy tuck too (had to be a silver lining there somewhere) but the length of the operation and the out of pocket cost was a lot more that I expected and I have decided not to weigh myself down with that for the moment. The breast cancer support centre ‘Choices’ advised me to just put my name down on the public waiting list, so I think that is what I will do and decide that in a couple of years... I just need to get my head around what I am going to look like on the other side of the mastectomy surgery? I know I am stronger to cope with this having been diagnosed for a second time. The first diagnosis definitely made me stronger and more resilient in my life. I am not backward in coming forward, never hesitate to eliminate things in my life that cause me grief. That’s why I don’t feel any loyalty to my breasts as they definitely are not my BFF’s. I have breast fed 3 beautiful kids (now all adults) so I really don’t need them anymore and the thought of never wearing bras around the house is starting to feel pretty good! I am currently a DD size so I am quiet envious of my daughter coming home and the first thing she does is take her bra off!! In all seriousness though....I just need to get my head around this choice as it’s not like going to the hairdresser and having a bad hair cut and saying ‘it will grow back’. Once they are gone, there is no coming back. But I just don’t want to roll the dice again 🤔 thanks for reading my story, any advise would be greatly appreciated ❤️ Christine x
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.
Surgery choice
I have just been diagnosed with Stage 2 Breast Cancer. My surgeon's recommendation is a lumpectomy and radiation, but she will support me in whatever surgery choice I make. In my Mum's immediate family, her Mother (my Nana), two brothers and her sister (breast- then bone) have all had cancer. Three of them developed secondary cancers and passed away within two years. I want to reduce the chance of mine cancer coming back so have decided on a double mastectomy and reconstruction. I would be interested in any feed back. Has anyone else made this choice and if so, are they happy or disappointed with their decision? I am finding that just making this decision is more stressful that having the actual diagnosis
Gah. Back again.
Almost seven years ago I roller-skated through Olivia Newton John hospital to Xanadu for my last radiotherapy session, post lumpectomy. Here I am again... another oestrogen positive cancer, same stoopid dense breast. It was picked up on MRI as it couldn't be seen through my milky dense breast tissue and after an MRI biopsy (such fun!!!) I was diagnosed last week. So now I'm up for a double mastectomy and trying to make reconstruction decisions. I'm thinking I may need to go the Johnny Diep Flap. Seeing the plastic surgeon tomorrow. Really glad you're here....
Elective preventative mastectomy advice?
Every single day since my wide-excision I have resented my oncologists choices to deny me a double mastectomy, and for my five year survivorship I plan to treat myself to correcting it. The surgery I had left me with permanent pain, and after becoming pregnant, which I wasn’t sure was possible, my other breast grew over a full cup size. There are no bra solutions. And I lost the baby just at the end of the first trimester. I’m left more uncomfortable on a daily basis than I’ve ever been in my life. I don’t have a love-hate relationship with my breasts, they are uncomfortable both to see and touch. This exposition is more for the purposes of illustrating that I don’t take this decision lightly and is not purely out of that life long survivor’s anxiety of recurrence, and I know that it won’t be covered by Medicare. My question is, where do I go? I don’t want to come out of the surgery as a purely medical exercise, I’d like a somewhat smooth chest. Does anyone know a surgeon in Sydney who offers mastectomy and - I suppose ‘sculpting’? I don’t need or want new fake breasts or nipples, I just do not want to come out of the surgery only to recover with new alien lumps and folds to get used to. Thank you in advance for any input and guidance!
Bilateral Mastectomy and no further treatment
Just wondering if there is anyone out there who has had either a mastectomy or bilateral mastectomy who then didn't need any further treatment at all? I had this earlier this year but everywhere I look everyone talks about treatment following surgery.Mine required none which is fabulous but I have this feeling I don't quite fit anywhere. It seems there was this sudden rush of activity after diagnosis, a quick surgery and then a sudden stop it all. I was never sick, another thing to celebrate.
No reconstruction after double mast
im looking to hear from women who have had a double and chose No reconstruction. iv had a double, temporary implant ( which are s pest) I was considering DIEP hence the implants...... but not sure if the surgery/ reconstruction is worth the $16,000 and Another BIG surgery and recovery. ( yes the tummy tuck and nice breast would be great..... no doubt there at all and I’m sure it’s worth it but anyone not reconstruct and still feel content and happy. my husband I’d supportive of what ever I choose. I’m quite active, I like to run and exercise and I want to be able to do handstands and cart wheels with my daughter before she gets over it. I just hate these implants, I could get them out quickly. But have to wait for DIEP as I had radiation in dec. 🤷♀️ Just interested to hear others experience with no reconstruction. Or anyone like me and want or removed these stupid uncomfortable implants?