ER/PR+ HER2- invasive lobular
I’m a 47 yr old mum of one 6 yr old. I received my ER/PR+ HER2- invasive lobular cancer diagnosis this week. Due to strong family history (mum passed away at 62 in 2012 with triple negative BC- and her mother also passed away at similar age from BC type unknown as it was late 1970s) - my sister and I had started the process of having additional screening etc. My mammogram and Ultrasound in Jan this year was clear - MRI last month showed something- which following a core biopsy has revealed 3mm ER/PR+ HER2- invasive lobular cancer. As I was already under care of private breast surgeon due to wanting extra screening etc- I feel grateful to have already talked to her about surgery options and possible surgery week of 12th January. I went for genetic testing this week and now wait to see results. Am weighing up option of double mastectomy(and reconstruction) - though surgeon has advised its very early and very small so lumpectomy and sentinel node surgery is a very feasible option too. Followed by radiation therapy and tamoxifen. If I chose a mastectomy it may reduce my need for radiation and tamoxifen.Surgeon & 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?
Radiotherapy side effects
Hello I began chemotherapy in April this year for triple negative breast cancer and 2 weeks ago I finished 13 cycles of chemo. I now can have a lumpectomy followed by 3 weeks of radiotherapy. Due to some side effects of radiotherapy, I was looking at my options of removing the whole breast which I then could avoid radiotherapy as both options have the same survival rate. I have had sarcoid of the lungs in past and lot of severe gerd pain which I’m on medication for recently due to chemo. Has anyone got any experience with longterm side effects from radiotherapy they could share? Thank you
Nerve Pain Management
Hello, I have recently been diagnosed with DCIS left breast for which I am 1 surgery done and another next week to clear further margins. I am struggling with the sensation in my nipple area for which I'm told is my nerves rejoining which can take up to 6 months to reform. I am finding the sensation extremely uncomfortable and am often in tears at the end of the day at the overstimulation of the area. I am wearing a bra 24/7 as a simple movement on my nipple is too much. I'm wondering if anyone has had success with anything natural as I ideally don't want to take any pharmaceutical medicines. Appreciate any guidance 😊
Reluctant about mastectomy
This is awesome that a supportive community like this is available. My mum was recently diagnosed with breast cancer. She has had an initial lumpectomy and now requiring a mastectomy. She's struggling to understand the necessity of undergoing this treatment due to being asymptomatic. I was wondering if any ladies here, particularly Cantonese-speaking were willing to share their experience in undergoing this type of surgery. I know my mum would appreciate talking on the phone to someone, if anyone is happy to share details or exchange emails. Thank you so much for your help in advance 🙏🏻 🙏🏻 🙏🏻 ☺️ ConstanceLooking at the 3rd surgery in 1 month
Hi all, I have been diagnosed with Stage 1 breast cancer with two less than 2cm but fast growing grade 3 tumor in mid Sept and had the lumpectomy surgery to remove the tumor . however pathology report came back saying they found DCIS cells at the margin. So I quickly done a re-excision surgery in mid Oct. The second surgery hit me really hard for not only I felt more pain but also i felt way weaker. But this tues, the surgeon told me they find IDC cancer cells at another margin. Now the surgeon is saying you should do another lumpectomy re-excision surgery. Emotionally I am devastated. But I cannot understand why can't they do a MRI to double check the margin? Or is this newly grown mass? My surgeon was not very open in sharing information. I am now seeking 2nd opinion. But i am so worry it will delay my whole treatment process. Anyone has similar experience to go through multiple surgeries?
5 months since diagnosis
Hi, I have posted a bit of my story here but thought I'd post a more complete summary here for posterity. I turned 50 in Jan24 and moved from Melbourne to Adelaide in Mar24. Shortly after arriving I got a letter from BreastscreenSA offering free screening and basically ignored it, Then I started a new job in Aug24 and there are BreastscreenSA flyers on the doors in the ladies' loo and those faces kept looking at me everyday so in Nov24 I buckled and book in for a screen in my lunchbreak. I was in and out in 10 minutes, it was a little uncomfortable but not painful. I thought nothing more of it until I got a call 3 weeks later saying after reviewing the images a spot had been noted and I should come in for enhanced imaging, ultra-sound and based on the outcome of those, possibly a biopsy. The appointment was booked in for 2 weeks later. I didn't tell anyone, partner included, and tried not to think about it. I was in the 'its probably nothing' phase. At the appointment I was shown the original mammogram images pointing out the bright spot in my right breast they thought looked suspect. It was small, quite high up and at the back away from the nipple. I had the 3D mammogram and based on that they went ahead with an ultra-sound. They showed me the same spot on the ultra-sound and recommended a biopsy. I went ahead. I had no choice at that point to tell my other half as I came out with a wedge shaped bruise and dressing on my boob I was not going to be able to explain away. I should also say that being a normally healthy person I hadn't bothered registering with a GP since relocating so I had to call around and settle for the only place that was accepting new patients and could do an appointment the next day. 4 days after the biopsy and 9 days before christmas, I went back to the BreastScreenSA assessment centre for my results. It wasn't good news, I had a ~6mm, Grade 2 IDC ER/PR + HER2 -, and very dense breast tissue. The nurse called the GP on my behalf to make an appointment for the next day for a referral for surgery. I was referred to the RAH and had my first appointment with the surgeon and met with the Breast Care nurse just under 2 weeks later, this was 30Dec. The surgeon talked me though the treatment plan. It was to be a lumpectomy with a sentinel node biopsy followed by a course of radiation therapy rounded out with 5 years on Tamoxifen. No chemo required. I'm sure I should have asked more questions about the treatment plan, but to be honest I was so relieved I wouldn't need chemo and he wasn't suggesting a mastectomy I just accepted what he was telling me. I had another ultrasound and they placed a carbon track for the surgeon to follow. I was also booked in for an MRI due to the density of my breast tissue to check for anything the mammogram and ultrasound may have missed. That happened 2 weeks later and thankfully I didn't have to wait long for the results, 2 days later I was told there was nothing else identified on the MRI so we would proceed with the treatment plan which meant surgery 2 weeks later on 30Jan. I had the surgery on the Thursday, up to this point I hadn't really been too emotional or anxious. I was taking each day as it came and going by the 'it is what it is' principle so I wasn't overthinking it. My partner was also determined not to let me give into anxiety and worry, we are both of the British stiff upper lip type, we rarely get over-emotional and the approach worked well. Until I walked into the operating theatre, lay on the bed and burst into tears! It just all became very real and I started sobbing, they asked me to confirm the procedure they were going to be doing, which I did, then all I remember is the nurse holding my hand telling me they would take good care of me and me blubbing 'I know'. Then I woke up in recovery and started crying again, this time with relief. I was in the hospital overnight, I had very little pain - probably due to the pain killers, and I was discharged the next morning. I was given a prescription for some strong painkillers but I didn't need them, I was able to manage with just paracetamol. I was back at work on the Tuesday. I only told 2 of my closest colleagues about my diagnosis, one I sit opposite so I felt it only fair to explain why I might seem 'a little distracted' and was having so many medical appointments. The other is a friend. The only issues I had in the days following surgery was difficulty sleeping as I had to sleep on my back rather than my side/front which I prefer and some swelling which turned out to be a seroma that was drained when the dressing was removed. The special little pillow I was given by the BC nurse was helpful for sleeping a little more comfortably too. I had my post-op follow-up 10 days after surgery and got the news that they had removed a 9mm tumor with clear margins and the lymph nodes were also clear, so no further surgery required. The dressing and stitches were removed and the seroma drained. I was given a prescription for Tamoxifen then too, with instructions to start them sometime after the radiation therapy was finished. Then it was all quiet after that for a few weeks, I was left to heal and I was feeling pretty good, I still had numbness in my underarm area but the swelling was coming down and the bruising fading. 5 weeks after surgery I had my first appointment with the radiation oncologist who explained I would be having 15 fractions over 3 weeks. The planning CT was scheduled the following week, I had my little tattoos and treatment started 2 weeks after that. Call me weird, but I actually rather enjoyed the daily ritual of going to the hospital for my little 10 minute lie down. I might have felt differently if it hadn't been so convenient. I can get to the hospital from home in less than 40 minutes and it is only 10 minutes from where I work, so travelling wasn't an issue and I was able to have the sessions scheduled either before work or during my lunch break. I had very few side effects from the radiation, the only one of note being my nipple itched like crazy, I used the sorbalene I was given and the nurse gave me some silicone dressings that really helped, anti-histamine worked wonders when the itchiness was at its worst. My only other side-effect from treatment so far is a little bit of cording in my right arm which is being managed with massage and exercise through a lymphoedema physio. That brings me right up to the present. The only visible signs are a single scar about 6cm long in the crease of my right breast just below my underarm that is smoothing out and fading nicely, and some residual discolouration from the radiation that is also fading. Yesterday I went to the pharmacy to fill the tamoxifen prescription and took the first tablet this morning. My next appointment is in early August. I'll post more if/when side effects of the tamoxifen kick-in. This the phase of treatment I have been most worried about. I feel well and would rather just leave the whole thing behind me. But I know I can't do that. It was dumb luck that I went for that first mammogram when I did, that the BC was picked up when it was, and was able to be treated to simply. I feel very lucky to have come this far with so little disruption to my life, knowing it could easily have been so much worse. This was a very long post so thank you for persevering if you are still reading, and thank you to all that post, reply and like the posts on this forum. I've read so many stories that just reinforce the gratitude I feel for the support that is their for us all as we travel this journey.
Early HER2+
I understand what Early is and I am grateful that I found something at the same time as my breastscreen mammogram and it is not in lymph glands, PET was also clear but they need a new name for Early. My treatment is starting 9/10 and will be Chemo (abraxane) & hercepton then surgery and radiation. I thought I had choice after doing a lot of research on trusted websites, listening to great podcasts and asking questions of my MDT but although they say I do they highly recommend the above plan. I am resolved to losing my hair and looking forward to the freedom no hair should bring me, I am self employed so can regulate my hours, I am active and look forward to keeping that going, as I know how good it makes me feel and again research shows, it helps us through chemo and everything else. What I struggle with is seeing others reactions to the news and seeing my husband frustrated by the time it takes to have tests and get things started. I would delay treatment even longer if I could but know that is not a good decision as the HER2+ is a grade 3. With a name like Early people seem to think 🤔 I will have an easy run, and I certainly hope I do but have read enough to know that I may not. People also say oh that’s good it’s not urgent then and not that bad. For someone who limits toxins as much as one can this is testing my self control to the limits and then having people say and think 🤔 it is going to be an easy road does not sit well with me. I am babbling and that is certainly something that has happened since diagnosis. I spent 24 hours in denial and 24 hours in why and have decided to tell only positive supportive people going forward and focus on things I can control and leave the rest to my team. thankyou for letting me rant and thankyou for all your encouraging posts and links which I have loved. Let’s kick this tumours out of here xWorking while waiting for surgery
Hi all, was diagnosed 3 weeks ago today with early stage and was told I’d be having surgery pretty quickly. Ended up having to have more tests to eliminate issues in the other side and thankfully that all seems to be clear. But that has meant I still don’t have a date for surgery (I should find out tomorrow hopefully). My question is about how you’ve all kept sane during this ‘limbo’ period. My emotions and anxiety are all over the place, I can’t really focus or concentrate so I’ve taken a fair few days off work. I’m lucky enough that I can work from home (when I’m up to it) and my boss is awesome but I weirdly feel guilty about taking time off as though I should be managing this better. I’m conscious my surgery might not be for another few weeks so feel I need to work out better ways to handle this. Any inputs welcome! Thanks.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
