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 xNewly 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.
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!Any suggestions /tips for preparing for surgery and heading home
Hi there, I will be having surgery in a week - lumpectomy and breast reduction in the other breast. I am trying to prepare what I can for not only the surgery but my return home. I have 2 primary age kids who are full of beans and 2 big dogs who love to be lap dogs. I am thinking maybe I need to create a quiet space in my bedroom and get an arm chair? Any other tips would be very much appreciated. I am also in the process of about to apply for income protection - it is a 90 day wait. Any suggestions with this would also be helpful.
Drain pain
Hi all I am two weeks post left nipple saving mastectomy on left with implant reconstruction. Pathology after surgery found cancer in lymph nodes so I had a lymph clearance one week ago. I have found the recovery from the lymph surgery so much more painful and my drain site seems to be where the pain is coming from. The tube continually looks blocked with clots. The breast care nurse tried “milking” the drain today but it was so painful. Just looking to hear whether this is a common experience or whether I should be trying to get the tubes changed? Thanks all
My ALND was a bust..
Hi everyone, this is my first time posting. I discovered my lump in late May while breastfeeding my bub, and am now two weeks post surgery for hormone positive breast cancer. Not the clogged duct I had originally assumed it was. It’s been an awful shock, as I know everyone will understand. So, I have just had a lumpectomy, a LICAP reconstruction on the boob, and level 2 axillary clearance. I’m looking for advice from those who have had an axillary lymph node dissection. I just had my post-op and it was a real mixed bag. Breast cancer out with clear margins (great) BUT seven nodes removed and … none cancerous. While that sounds like great news the problem is that they had biopsied one suspicious node prior to surgery and it had come back positive. So it appears that this positive node was missed. I’m now headed for a second surgery. My question is - for those of you who have undergone ALND- is it normal that they didn’t mark my positive node in any way so they knew where it was during the biopsy or prior to surgery? The doctors are saying they will mark it for the second surgery with magseed and it seems completely ridiculous to me that this wasn’t done initially, when my breast tumor (which was palpable so very obvious) was marked during biopsy. It just seems very slap dash to presume you don’t need to mark as you’re taking everything out anyway. I am wondering whether not marking or targeting when a clearance is planned is just normal procedure and I should just roll with this situation, or whether my hospital or perhaps the surgeon has not done something they probably should have ie mark the cancerous node. I have an appointment on Friday with the surgeon, and I feel knowing others experiences prior to that conversation will give me some peace of mind, or perhaps the gumption to at least push for a second biopsy alongside the magseed. I want to be really sure this time that they are targeting and marking the right node before I go for another surgery. Any shared experiences or thoughts from those who have walked this road ahead of me is appreciated. You are all so brave. This whole situation is very frightening.
