How did I get here?
Hi everyone, what do I say…I am in shock! I felt it was time I reached out to the community as I’ve been reading all your posts the past few weeks and now I really need support and reassurance. I am 56 and have a wonderful husband and three beautiful 20 something children. I had a routine mammogram in April (12 monthly due to Mum and sister both having BC in the past - both early and doing fine now) and diagnosed on 13 May with invasive carcinoma with micropapillary features, 17mm in size, ER/PR+ve HER2 2+equivaocal from biopsy and ultrasound/3D mammogram. A further weeks wait for HER2 ISH testing which was negative before surgery options were discussed. As I have size G breasts and the lump was apparently so small I opted for WLE with oncoplastic breast reduction as my Mum and sister had both had good outcomes with lumpectomy so I was confident with the reduction they would get good margins. Surgery was performed on 30/5 and I’ve recovered well. Here js the kicker…I went back for the surgery and sentinel lymph node biopsy results and first the surgeon tells me the tumour was 64mm not 17mm! Then he tells me there were mega metastases in the lymph node which was removed. On the pathology report it say ‘the lymph node is almost completely replaced by metastatic carcinoma with similar histological features’. The sentinel node was 28mm. Does this mean I have metastatic cancer? I am reeling…how did they get it so wrong??? And what now? The surgeon has said the next step is an auxiliary dissection which he has booked me in on 30/6 to do…20 days away! He said he needs to wait for things to settle properly after the last surgery with reduction. Meanwhile this cancer is travelling all through me… I am booked in for a PET with CT scan on Thursday which I guess they are looking for more metastases. Should I also be asking for a bone scan? I have not been referred to an oncologist yet, apparently that is after the next surgery but I really don’t understand why they wouldn’t be thinking to get me started on that now rather than waiting even longer. I just can’t comprehend the results I got yesterday. I have so many questions and I just feel like the surgeon is following a routine but I don’t understand why. After a sleepless night of anxiety through the roof I would love some words of advice from this amazing community. Thank you x
Partial mastectomy & Tdap flap experience
Thought I would share my experience here for future users as I didn't find many examples for partial mastectomy and Tdap (thracodorsal arterial perforator) flap reconstruction. I was diagnosed at 43 with stage 1 idc of 3.5cm in my right breast. It was found in my first ever mammogram which I only had as baseline because I was starting HRT for perimenopause. Thank god it got caught early. My Surgeon was very thorough and ordered CT, bone scan and MRI, which didn't show any spread to lymphs or beyond. The tumour was located at about 10o'clock between the nipple and armpit. Due to its largish size of 3.5cm the Surgeon recommend partial mastectomy but indicated would be able to spare my nipple and key sensation nerves. Understanding the options available to me was really important including the pros and cons of each. In particular I wanted to understand options that would maintain sensation. My breast surgeon put me in touch with the plastic surgeon to talk through options. I strongly recommend you ask for this consult if it isn't offered to you. Given the size and location of my tumour if I had opted for a reconstruction only the breast size would be very small, and then I would have needed to consider reduction of the healthy left breast for symmetry. The Plastic surgeon identified I was a good candidate for a TDAP flap reconstruction as part of a single surgery. While there are some risks a flap might not take, I felt it was the best first choice option for me. And I was positive that if everything went well I would only need one surgery rather than subsequent later reconstruction surgeries. Involving both breast surgeon and plastic surgeon did add a few weeks and a number of appointments to the first month after diagnosis. Luckily for me with my particular diagnosis the surgeon wasn't concerned it would impact on my prognosis. I am very aware how lucky my circumstances have been to allow me these choices. My surgery was about 4 hours I'm told. The breast surgeon removed the tumour, x-rayed to check the margins and then handed over to the plastic surgeon. In the end the flap needed to be taken from between Tdap and ldap area on my back close to my armpit area in order to have suitable arteries for blood connection. 1 lymph node removed. Thankfully when I came out of surgery I didn't have any nausea and ate a meal that evening! I was in hospital for 6 nights afterwards as you have two drains for flap surgery and the plastics team like to Closely monitor the flap and drains. The main discomfort I had for first few days was a sore shoulder because my arm had to be above my head for the four hours surgery. So anti-inflammatory cream was in high use. I was able to walk from day 2 and pretty much just on Panadol for pain. The bruising all over the entire breast was epic so arnica cream was essential. After 6 nights in hospital I was allowed to go home with my drains and have daily nurse visits to check. I also had direct mobile number for my specialist nurse if I had any questions. Being home in a quiet bedroom was a relief after the noisy nights of hospital ward. Currently on day 10 post surgery and still have the two drains, although I think they will be out in next few days. Flap surgery can also mean longer period of recovery before you can drive-up to six weeks. Although that is very individual and I'm hoping I might be able to drive in another week or so. Still early days but thought I would share my experience so far. SNewly diagnosed DCIS
Hi folks - I just got my diagnosis this morning and am going through ALL of the emotions. Seeing my GP on Monday for referral to a surgeon, but this site is huge - any suggestions for where to start? My treatment is likely to be a lumpectomy - hopefully with no radiation treatment but that’s a possibility. Unlikely to be chemo. Details are that it’s an intermediate grade ductal carcinoma in situ with focal comedonecrosis and calcifications (7mm x 4mm x 6mm). ER positive, PR positive. Both auxiliary lymph nodes normal.
DCIS - Mastectomy - Recon - clear for two years....now potentially something else
My situation in a brief paragraph: At 50 years of age, I was diagnosed with DCIS in my left breast. I opted for a bilateral mastectomy and recon. Sentinel nodes were clear. No radio or chemo required. That was almost two years ago. Apart from now suffering all the typical effects and symptoms of menopause due to no HRT, I've been blessed with a dream run and fantastic road to full recovery from BC. Completely grateful and thankful for the team and support I've had around me. The latest situation is that I've just been for my second annual post BC ultrasound with a view to reducing visits with my surgeon from three monthly to annually. I was looking forward to kissing cancer goodbye!! However, the sonographer has found an inflamed and vascular looking lymph node in my right armpit (opposite side to original BC diagnosis). It was explained to me that this can be due to a number of reasons: fighting off an infection, breathing in smoke, recent flu vaccinations or, at worst, something more sinister like cancer. My surgeon reviewed this and wants another ultrasound in three months to check on it and if need be, will biopsy then....I have a sick feeling about this. Since I don't feel like I'm fighting an infection, I haven't breathed in smoke lately & my flu vax was done 10 weeks ago in the opposite arm .... I am feeling extremely anxious that cancer has returned and that it's found a spot in my right armpit to grow and spread. A three month wait to see if this is or isn't the case seems like absolute torture and a return to 'the waiting game' that only cancer sufferers know. I'm sure that most of you reading this post can relate to the worry of 'the wait' when you have that initial cancer diagnosis. The awful feeling of being out of control and the unknown picture of what's up ahead. Sleeplessness has returned. Constantly thinking about it has returned. The worry has returned. I have back and neck pain that I'm sure is due to the stress, but am naturally concerned it's cancer returned. Since my mastectomy and recon, I've been able to put all of that aside - until now. Has anyone here experienced a vascular anomaly with their lymph nodes post having BC and recon? If so, what was it attributed to? How was it handled by your team? Should I be asking for a lymph biopsy or intervention earlier than waiting three months or am I worrying unnecessarily? I'd be grateful for any thoughts, honest advice or similar experiences & decisions that anyone can offer.
Do I stay or do I go?
Not your average post. Originally a backpacker from the UK, been in Aus 5 years and have moved onto a work sponsorship visa with my employer. I live in a very remote area and it is a 4 hour flight to my nearest 'treatment centre'. Two weeks ago it was confirmed (via biopsy) that in my left breast I have a 2mm invasive mass, and 10cm of non invasive DCIS. I had a contrast mamo and PET scan (no result yet) and scheduled for an MRI on the 6th June, and appointment with the surgeon to discuss options on the 10th June. My breast dr said the surgeon will recommend a mastectomy due to the large area of DCIS. Possibly chemo, radio and hormone therapy. They are also talking about what I want to do with my eggs. I am so scared, and I am not sleeping. I am only 34 years old without children. I don't know what to do, do I stay here in Australia and undergo the treatment recommended and stay near the hospital with the mother of a friend (who has also had breast cancer and has said she is more than happy to support me through required treatment). I love my life here that I have built over the past 5 years, and I love my job. I am scared I will lose my job with the next few months of treatment coming up (very little can be done remotely), my visa is tied to my job. I may get deported mid way through treatment? I dont know? I know I should speak to an immigration lawyer but I am already inundated with administration from cancer. My family back home are very supportive and will support whichever decision I make. They and I am also wary of the health care system back at home (which isn't in great shape). If I go home, I will take all my diagnosis letters and scans, but I will still have to start this process again from the start and basically be told twice I have cancer and they want to chop my breast off. I wont be able to get a job due to appointments and treatment, and wont be entitled to benefits as I haven't paid tax in my home country for 5 years. Its not just cancer anymore, I am not scared of the cancer as such as my whole life here being ripped away from under my feet. Sorry for the long post. I just don't know what to do for the best. Either way, I need to stay here until I have the full picture and know what the surgeon wants to do.
Experience with suction/negative pressure dressings
So last Thursday I had a bilateral "Goldilocks" mastectomy - it's Tuesday now, so today is the fifth day post-op. I had three nights in hospital and was discharged on Sunday, and every day has felt like a battle with these dressings. It's a system called Prevena that puts a foam layer over the sutures, and then a plastic dressing over that so that the attached pump can then apply a gentle vacuum. Even in hospital, every day has brought patches to the edges to try and maintain a seal. It holds if I'm sitting down but the moment I stand up, the pump goes off, and I hear a little whistle from a new leak somewhere in the dressing. It's getting pretty frustrating - I can't shower without it going off and even just doing a wash at the basin triggers leaks. And forget going for 'gentle walks' - I want to, but not if the dressing's going to leak the whole damn way. I'm due to have them removed on 9 December, so six more days with them. If I thought I was happy to have drains removed, that'll probably be nothing compared to the joy of getting rid of these dressings. Has anyone else had experience with suction/negative pressure dressings like this?
Post surgery changes
Good morning, I have a quick question to any women who have had lumpectomy/s and where the surgeon removed fat from under the underarm area right side only for me (side boob) to refill breast/s. I had lumpectomy's on both breasts at the same time, early cancers, both hormone positive ILC & IDC over a year ago now. My question is if they have been left with what looks like a small 3rd boob to me under their armpit that protrudes out. I cant understand how an area that has fat removed from it ends up bigger than before. It is uncomfortable, causes rubbing/friction that I did not have to contend with before and finding a bra that covers the area so the excess bulk doesn't get squeezed out from and overhangs from the bra line is frustrating. I only have B-Cup breasts and never had to wear heavy duty thick/wide band bras before because I wasn't big or had a lot of fat in the side boob area. Since surgery & having the fat apparently removed to fill the area my small tumours were removed from, I am now left with a bulge that is very noticeable from both the front & back. I dont wear singlet tops any more because the bulge is too noticeable. Very disappointing because I was not told about this outcome, only that there will be scar/s, which I have & don't concern me at all. Having a bulge/mass sticking out from the side of your breast seems more notable to mention than whatever scars might be left behind. Had I known I would not have had my breasts "refilled" from the small tumours removed. Any lop-sidedness or unevenness if any would have been fixed with a bit of padding, which most bras come with these days. I feel I have acquired a 3rd boob that is very noticeable whether I am clothed or not. Has this been any one else's experience?
Share your views: Artistic tattooing of breast-cancer mastectomy scars
Hi everyone! Following up on my previous post, I’d like to invite you to participate in a PhD research study being conducted by Tina-Maree Newlan of Charles Sturt University on artistic tattooing of breast-cancer mastectomy scars. The study aims to investigate the experiences of women who have had breast cancer mastectomy surgery and their experiences with making choices and decisions to decoratively tattoo mastectomy scars and what do those experiences mean for them. This request has been reviewed and approved by BCNA, and the project has been approved by Charles Sturt University Human Research Ethics Committee (Protocol number H24311). You are eligible to participate in this research study if you: are a women aged 18 or over have had an early breast cancer diagnosis, breast cancer mastectomy surgery and completed, or are in the process of completing, professional decorative artistic tattooing of mastectomy scarring Would like to participate in an interview and are English speaking sufficient to participate in an interview What does the study involve? Eligible participants would take part in an initial 60-minute interview (via Zoom or face to face, depending on geographical location relative to the Gold Coast) and then a subsequent second 30-minute interview around two months later. How do I take part? If you are interested in participating in this study or have any questions, please contact the researcher, Tina-Maree Newlan at tnewlan@csu.edu.au
Recovery times and support required following mastectomy and chemo
Sorry for long post... I'm new to this group. I was confirmed 2 days before Christmas with DCIS and suspected Paget’s Disease. I am facing a mastectomy and possible chemo, etc. I'm now looking at what my options are with respect to reconstruction. I’m seeing my breast surgeon tomorrow with my growing list of questions. So far she has suggested a reconstruction of the affected breast using a bit from my tummy. I asked about a double mastectomy - which she would support - but she said that type of reconstruction may not be possible as I don't have enough 'flesh' on my tummy. I'm still not sure what to do but I'm leaning towards a double as I don't want the anxiety of annual check ups moving forward, especially for my kids. I haven't met with a plastic surgeon yet, given the time of year. I am a 54 yo working single mother of 3 beautiful (mostly) humans aged 13, 16, 17 as well as 2 dogs and 2 useless cats. It's been a tough few years. My wonderful husband died unexpectedly in November 2023. Two months before that his mother also died suddenly and two months before that my mother had a life threatening seizure in front of me and was put into an induced coma and was in ICU for 3 days - she had had a stroke and breast cancer 6 months before that and she has Alzheimers. She then went into care two weeks after my husband's funeral. My Dad lives near by and is healthy - thank goodness. Given what's been going on, 'I don't have much left in my tank' to deal with this latest challenge but it is what it is. I am very lucky to have some wonderful friends and family (however it's not the same as having your partner support you.) So, I'm trying to prepare myself for what's coming - physically and emotionally. I'm wanting to understand what kind of help I'll need following surgery or surgeries. What will my energy be like? How long until I will be able to work, cook, clean, drive, etc? My kids are as helpful as any teens - which is OK but not great and the two eldest have especially busy schedules with lots of activities on top of doing their VCE. I appreciate that every situation is unique but knowing how others - particularly other single parents - have managed will help with my decision making and help me prepare for what lies ahead. Also, any referrals for mortality/grief counselling in Melb would be appreciated. Thank you. xxChoosing a surgeon (Melb) -New diagnosis overwhelm
Hi there, Im 49 and had my first routine mammogram in September- no family history or symptoms. They discovered calcifications, had a biopsy then 5 days ago I was told I had breast cancer. Stage 2-3 6cm aggressive.That’s all I can remember to be honest as I was in so much shock. Got referred to my GP in the afternoon and had to get referrals to a surgeon. With no time to think and still in shock our GP recommended Dr Sarah Kemp at Cabrini Malvern and a friend (and gp) recommended Dr. Melanie Walker at the Epworth in Richmond. It was so overwhelming and fast. Im someone who can’t make even the smallest of decisions eg what shoes to wear in the morning! lol We have met one surgeon as they had an apt the next morning. Do I meet the other as well? Keen to know is anyone had experiences with these breast surgeons and their team? How do I choose? Any advice would be very much appreciated. Feeling very overwhelmed and stressed! also worried about work and finances… I guess that’s another question!
