Newbie…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 xx
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.
2nd operation DCIS
Hi all, Was diagnosed in Feb this year with high grade DCIS, 3 small tumours. Lumpectomy 3 weeks ago. Pathology report came up with not clean edges. The surgeon said I have two options, do another re-excision with most likely radiotherapy and endocrine therapy, or mastectomy. I have a family history of breast cancer. Has anyone been through this desición before? What was your experience like? outcomes? Thanks for sharingDiagnosed Today
Hi all, I'm new here. I'm 48. I had my last Mammogram in November 2022, and was due for my next December 7th....however.... I went to the GP in November after feeling a breast lump for 10 days which I was hoping was hormonal. It didn't go away so I got it checked. GP didn't seem concerned but she appreciated that I was and ordered mammogram & ultrasound. Appointment was in 2 weeks. On Wednesday 4/12 I had the scans, the mammogram lady went quiet, later with the sonographer I said 'I'm just not sure if it's in my head or if I'm being hyper-vigilant' He said 'I'd say you're being the right amount of vigilant', then told me he would go and get the Dr who would need to check me. The Dr started telling me that I'll need a biopsy and that the statistics in Australia in particular are very successful for treating breast cancer. He went on to say that he'll get his report to my GP straight away and if we decide to use them for biopsy they'll get me in straight away and to contact my GP. So I drove home and on my way I stopped at the GP, the receptionist could not get me in till the next day to see the GP. I left in tears and went home. I decided to do some work and 2hrs later I got a call to say the GP wanted to see me immediately. I drove back and saw the GP who gave me a referral for urgent biopsy. I went straight to the local ultrasound place to see if they could book me an appointment at their sister site, that I attended earlier that day. They said they'd need to speak to their Dr and would call me. Within an hour they called me, and said their Dr would come to my local clinic and do the biopsies there for me the very next day, saving me the 45minute drive. Thursday 5/12 I had the biopsies of my breast and lymph node done. That was pretty smooth sailing and the Dr said he didn't want me waiting a week at the other clinic so came up here especially for me. All the staff were SO lovely and I'm eternally grateful for their care and concern - however the urgency is absolutely scared the crap out of me 🫣 Today 10/12 I got my biopsy results and am officially diagnosed with Breast Cancer. No idea what most of it means but basically 👻 Invasive Carcinoma NST; and 🐝 Metastatic Adenocarcinoma 🍃 ER/PR Positive 🍂 HER2 Positive (Amplified) An hour after j left the GP, the local Cancer Centre phoned me, so I have: Medical Oncologist Appt: next Monday Radiology Oncologist Appt: next Thursday I don't understand what NST means, and it wasn't staged on pathology...is that usual? I haven't told my children, and am hoping to hold off till after sons' birthday and grandsons first Christmas. One thing I have to say is that I am SO incredibly grateful for the swiftness of care I've received and am receiving. It's a crappy club to be a part of 😭 but I look forward to 'meeting' you all xx
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.
Here's to all the test's we have to have - a wee jingle I made up - cause well we have to find some
So as some of you may know I'm still going through my second round of breast cancer, and still under going all these tests that my medical have put me though, today I chose to go through my I-Med radiology app to look over how many different producers I've been booked for, and gone through, and I came up with this wee jingle I could turn this into a new version of a Christmas song : you know the one “On the first day of Christmas my true love gave to me “ Well in here goes this wee tune "On my second cancer diagnosis my medical team gave to me " 4 cannula’s into the veins for all the contrast dies 3 breast ultrasounds 3 biopsy ( one double, one triple, then a single ) 3 mammograms 2 MRI’s 1 PET Scan 1 MRI guided biopsy 1 genetic test for family history And still no surgery Now tell me you just didn’t sing that tune in your head hopefully that put a smile on your dial , as we try to stay positive and support one another this October, breast cancer awareness month Happy Saturday every one hopefully my medical team will soon know when they want to do the surgery ???
