Struggling to make surgery/reconstruction decision
Hi everyone I have been diagnosed with high grade DCIS with an MRI showing a potential small spot of invasive cancer in my right breast. I have to have a mastectomy and I am booked in for surgery next Monday (8/9) but I am struggling to decide whether to have a bilateral mastectomy and what type of reconstruction to have. I have phone consultations with the plastic surgeon and the breast surgeon tomorrow and have to make the decision during these consultations. I am conflicted with what to do as I am waiting on the results of genetic testing (I had a tumour that was borderline cancer removed in December last year, which included removing an ovary and a fallopian tube) so am extremely fearful of having to go through this again. My initial reaction has been to get rid of both to be on the safe side which my surgeon was supporting but during a phone call with her yesterday she thinks my best option is to do only the affected breast and leave the other one. The reason she is recommending this is the left nipple can not be spared due to this breast being more saggy and the blood flow (don’t really understand it completely so that may not make too much sense) so at then end of the day if I choose to have the bilateral mastectomy I will have no nipples which she is worried I will regret. if I only do the one breast I may have enough fat on my stomach to do the flap surgery and they should be able to spare the nipple. I do not have enough fat on my stomach to do two breasts so would need to also take fat from my thighs. I have decided against this due to the scars that would be left in my thighs so if I have the bilateral mastectomy I would opt for implants. I would appreciate any input from anyone who has had a similar experience as I am at a loss what to do and only have tomorrow to decide. Specifically, if anyone has had to choose between a single or double mastectomy and has experience with nipple-sparing versus non-nipple-sparing procedures, or if anyone has had regrets about their choice, I would really value hearing your perspective. Any advice or experience would be a huge help right now. Thanks.100Views0likes6CommentsReally struggling with needing mastectomy
I have really been agonising over needing a mastectomy. I just feel horrified that they want to cut my breasts off and wonder how I will accept and deal with lookiing down to see no breasts. I have had really huge boobs all my life and 9 years ago finally had a reduction. Went from F/G cup to D. I have liked the size of my boobs for the first time since I was 14 yrs of age. So now the irony of getting them completely chopped off. But how do you deal with having no boobs? I'm really quite terrified. I know I have to do it to get rid of the damn cancer. But I guess it's also because I have never felt sick, unwell or anything. Just found a lump. I feel completely fine. So even I guess just accepting that I really DO have breast cancer? And I really DO need to treat it....is tough. I've had terrible complications from Chemo and been very sick. Heart failure and heart block and got a Defib implanted...that all seems way more real then the actual breast cancer. Now I have to face having the mastectomy. Not sure what I'm looking for here...just wanting to spill perhaps? Thanks all.36Views0likes1CommentSurgeon & Hospital Choices Melbourne
Hi, I am recently diagnosed with DCIS and 75 years old. I live in Melbourne and need to select a Surgeon and Hospital for either a Lumpectomy or mastectomy. Does anyone have experience with Cabrini or Epworth and also with the surgeons Sarah Kemp or Melanie Walker?22Views0likes0Commentsmastectomy scar pain
i had a malignant Phylliodes tumour removed with mastectomy on june 4 this year, they also took lymph nodes. recovery has gone well so far but in the past 2 weeks I have been having pain along the scar. hurts to bend or roll over, its Ok while standing. Ive had an ultrasound, which shows nothing and now am on anti inflamms. anyone else had this issue? and what was the result? thanks53Views0likes3CommentsNewbie…long story
Hi everyone, Newbie here. Never dreamt I would be joining this club, but who does ?! This forum and website have been so helpful to me over the past month. My journey started last June when I decided to speak with my GP about a tender spot right on the inside edge of my left breast. She reassured me that tenderness isn’t typically a symptom of breast cancer, but we would check it out. Got an ultrasound and mammogram. US identified a small mass, mammo some calcifications. Got an us biopsy around October, all clear. Then around Christmas I noticed some brown nipple discharge (took a while to accept it was coming from the nipple, thought I had spilt something…. Every few days in the same spot!!!). Back to the GP, another ultrasound. The report said there was “debris” in the duct, couldn’t exclude papilloma, MRI would confirm, surgical consult recommended. So off for the consult, after which I was told the discharge was due to trauma to the breast from the biopsy (they didn’t send me for the MRI). This was purely based on discussion and very brief examination. In hindsight and knowing what I do now, I would have pushed back and demanded the MRI regardless. Relief! But my GP wasn’t convinced. She sent me for an MRI then a consult with a specialist breast surgeon who, after looking at the MRI, immediately sent me for some MRI and stereotactic biopsies…2 in my left and one in the right. That was a bit of a marathon! I was convinced it was all a waste of time and money! I turned up to the surgeon for results unconcerned…obviously rather naive! “You’ve got a lot going on in your breasts!” were her first words. LCIS and papilloma in my right breast, DCIS and invasive Mucinous carcinoma in my left. I was speechless. Shocked. Bewildered. Confused. We briefly discussed next steps, but I couldn’t get out of there fast enough! I called my husband in tears. We went back together to the surgeon the following Monday, after doing a bit of research, lots of reading, and chatting with a wonderful McGrath Breast Care Nurse. After asking more questions, I decided on a left mastectomy and right lumpectomy. Plus sentinel node biopsy on the left. But I was so angry. How could the first surgeon send me away without really being sure??!! I went through all the feelings, disbelief, anger, sadness, grief, a bit more anger, and finally acceptance (mostly anyway!!). I realise I have to let go of the anger, and am taking it on as a learning - it’s important to advocate for our own health and not accept something too easily if it doesn’t seem right. Hubby and I had a two week holiday booked up north the following week, which the surgeon said was fine, so we booked surgery for August 13, ten days after we would get home. The holiday was great, we hadn’t told anyone at that point (except my mum and work). We were able to not think about it and had some really special time together. It was good to have the space and time to process what was happening. so now I’m one week post surgery, contemplating the future, keen to get back to everything I used to do. I had been training for a half marathon in September, which of course now won’t be happening. We are hiking the Overland Track in February, so that’s what I’m aiming for. I’m so very lucky to have an amazing, competent, supportive partner. He has taken the same time off work as me to support my recovery. He even washed my hair for me yesterday :-) Recovery is going pretty well, although I’m often still uncomfortable in bed. Getting the drain tube out a couple of days ago was wonderful! We go back to the surgeon next week (two weeks after surgery) for dressings etc and results. Fingers and toes are all crossed! Thanks for getting this far, there’s something a little cathartic in writing this down. I’ve really appreciated reading others stories, it helps with knowing we are not alone and the feelings are valid. Thank you :-) Belinda xx145Views4likes6CommentsWhat The Heck Radiation and Chemo? What to do and the side effects, are freaking me out.
In July, I had a mastectomy with lymph nodes out, then they found cancer somewhere else in the body with completely no relation to the breast cancer. If the breast cancer wasn't enough. So, now I have to deal with the other cancer site, which is colorectal, and I have just had an appointment with the radiation and chemo doctors at Royal Brisbane Women's, and I don't mind admitting I'm freaking out. The side effects of the 50/50 cure seem to be so much worse than the actual disease. Yes, I know that the disease, if left to run riot, equals, you know. But, after all these years of funding and funding, why do we not have something better? It's so weird that since my surgery, I have had posts popping up on my socials left right, and centre. Like the "Cure from Japan with Bee Venom" seriously makes me want to find a hive and fly into one with wanton abandon. A "Breakthrough in South Korea, scientists can turn cancer cells back to normal cells," .. Say WHAT? (frantically looking up flights to S Korea) Then there is Ivermectin, Febendazole, and something blue? I mean, I have never paid attention to these things before, but now, my ears prick to the slightest twitch and rustle, like a kid who hears a lolly bag open within a 10-mile radius. I can't help it, I am confused about everything, am I the only one? When I confronted the chemo doctor about all of my concerns and questions, he said If you don't do this, you will be in palliative care in 3 months .. What, hang on what the heck???? I mean, just like that, he said that without any pause or thought, I was never advised that before, and then said, "Whatever you decide, we start therapy on the 28th July, and proceeded to walk out. This journey is brand new; everything has happened since July, and it is no lie, akin to riding a faulty wooden roller coaster with loose nuts, bolts, and rotting timber, operated by a maniacal, crazy clown, in the middle of a thunderstorm, who looks like he has been dragged through a hedge backwards. Just to clarify, the clown is the cancer. I have questions, a thousand of them, with no end of these questions in sight. Where are the natural alternative therapies, like, singing bowls, or is humming drums? What about the milk from an Aztec goat? Yeah, or the petals from a rare flower that only grows on top of some hidden temple in the Amazonian forest, which, on recent reading, is currently swarming with giant anacondas in a breeding frenzy, ugh! Ok, I made up the goat and flowers. No, there is only radiation and chemo. Sigh! I don't know what to do with this option. I have been told my cycle will be 28 days straight of radiation with chemo. I can look forward to a burning bum hole, diareah, burnt skin, possible issues with legs and bladder, and kidneys, and all sorts of other stuff. However, I was told that everyone is different and responds differently. Well, I have to say I don't feel that comforted at all. I am overwhelmed. If anyone can share with me their experience with radiation and chemo, I would love to hear from you. And if anyone knows where I can get my hands on an AZTEC goat in Brisbane, I would love that too!! Goats are ravenous but cute.242Views2likes10CommentsI want a double M
So I've only just been diagnosed, haven't seen a surgeon yet, but was told I'd probably be offered a single mastectomy. Thing is, I want a double. For more than one reason. I don't want to have to worry about the other one or take medication. My grandmother got breast cancer early (in her 30s), had a single M, then got it in the other one decades later and died. Also, I don't want to be lopsided. I'd feel like a freak with only one. I want to go flat. I'm in the public system so I'm assuming I won't get a choice? Any advice? This is of course assuming I get surgery and am not metastatic, which I don't know yet.85Views0likes6CommentsDCIS and. travel insurance
Hi all, after another DCIS bout and single mastectomy earlier this year I’m planning on a bit of travel. When trying to fill in travel insurance health questionnaires has anyone experience with what you put in for DCIS. There are a number of choices when you put in breast. Thanks in advance. Jen102Views1like1CommentDouble mastectomy and immediate reconstruction
Hi all, new member of this exclusive club nobody wants to be a part of! Just found out the lump in my right breast is cancer 5 days ago. I’m 43 and considered young for cancer (how nice… been a while since I’ve been called young 😅) I am still in shock so have gone into plan mode. I Still don’t know what stage type or grade yet but scheduled for a breast MRI and biopsy tomorrow. My question is if anyone has ever been through Peter Mac as either a public or private patient? What was the experience like? How long was the wait for surgery and reconstruction? I’m not sure if my private will cover all costs of surgery as my surgeon (who operates privately) so far says I’m a candidate for a double mastectomy but is waiting on biopsy report and MRI. Ideally I am leaning towards an immediate DIEP reconstruction. Anyone had that before? Thank you 🙏251Views1like5CommentsMastectomy /post surgery pillow
Hi all, I have a brand new mastectomy pillow that I found really helpful that is basically as new. I would be really happy to post it to anyone that is about to have surgery at no cost. I just can’t bear to throw it away and would be happy for it to help someone else! Just dm me with your address if you would like it. I’ve attached some photos x221Views1like7Comments