Burnt out DCIS
Hello! I was diagnosed with high grade DCIS in my left breast in 2024 and opted for a mastectomy on that side. Pathology later showed it had started to become invasive (just barely, but still). My sister passed away from metastatic breast cancer in 2022, and my dad from bowel cancer in 2004, and both had roller-coaster journeys with treatment, so I wanted it out, with what to me felt like the least amount of fuss. I recently had my 1 year check up and they have found 'burnt out' DCIS in my remaining breast. The little information I have found on this says that it is DCIS that has regressed or resolved itself. In my initial chat with the Dr we discussed that given my history, having another mastectomy was the way to go - that we could do further investigation but that there was a high chance it would come back and lumpectomys would kind of be chipping away at one breast - whereas a mastectomy would eliminate risk altogether (I know this isn't 100% but you know what I mean). I've just had a phone call from my surgeon, while we try and find a date for the surgery, who reiterated that we haven't definitely found cancer in the right breast - there are calcifications that weren't there 12 months ago and this 'burnt out' patch, and he wanted to check I was OK with this decision still. I reiterated that I was but now that I'm off the phone am starting to second guess my decision! My gut still says mastectomy - both my dad and my sister died from aggressive cancers in their 40s - and my priority is not giving it a chance to take root in my body. But now I have the niggling feeling that maybe I should watch and wait for a while and see what changes. DCIS obviously isnt guaranteed to progress further, but I can't find enough information about what 'burnt out' actually means longer term. Has anyone had experience with 'burnt out' DCIS and can tell me more about it? Or have any other advice about making a decision?
Radiation Therapy Omission
Hello, I have been informed by a radiation oncologist that I am at a increased risk of developing radiation-induced fibrosis (RIF) from radiation therapy (RT) due to my having a connective tissue disorder. Following research around this I am currently weighing-up the risks and examining my options. I find the decision-making around this challenging and would like to invite members to share their experiences with: Decision-making around RT omission Experiences with RT omission Experiences with RIF e.g. immediate and late-onset effects Please include as much detail as possible. All comments are appreciated. Thank you, š·Klio
How did I get here?
Hi everyone, what do I sayā¦I am in shock! I felt it was time I reached out to the community as Iāve 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 Iāve recovered well. Here js the kickerā¦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 āthe lymph node is almost completely replaced by metastatic carcinoma with similar histological featuresā. The sentinel node was 28mm. Does this mean I have metastatic cancer? I am reelingā¦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 doā¦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 meā¦ 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 donāt understand why they wouldnāt be thinking to get me started on that now rather than waiting even longer. I just canāt comprehend the results I got yesterday. I have so many questions and I just feel like the surgeon is following a routine but I donāt 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
Newbieā¦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 isnāt 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 somethingā¦. Every few days in the same spot!!!). Back to the GP, another ultrasound. The report said there was ādebrisā in the duct, couldnāt 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 didnāt 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 wasnāt 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 biopsiesā¦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 unconcernedā¦obviously rather naive! āYouāve got a lot going on in your breasts!ā 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 couldnāt 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 - itās important to advocate for our own health and not accept something too easily if it doesnāt 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 hadnāt 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 Iām 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 wonāt be happening. We are hiking the Overland Track in February, so thatās what Iām aiming for. Iām 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 Iām 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, thereās something a little cathartic in writing this down. Iāve really appreciated reading others stories, it helps with knowing we are not alone and the feelings are valid. Thank you :-) Belinda xxRecommendations-North Brisbane -Public v Private- Surgeons
Hi Everyone, I do hope everyone is travelling as well as they can be. Was hoping to hear of experiences and recommendations about Public v Private -North Brisbane. My GP has advised if I choose to go private then I need to find surgeon and they can send referral. Not sure where to startā¦have rang some surgeons, am feeling like I am looking for a needle in a haystack. Has anyone had experiences with going private and having significant out of pocket expenses? Or going Public and what wait times/facilities are like, that they are comfortable in sharing. Preliminary advice is that it is likely treatment will be Chemotherapy then surgery, nothing confirmed until appointment with surgeon.
Hormone Replacement Therapy?
Hi all ā Iāve been reading a recent research- esp. from the US, including the book Estrogen Matters, which questions the idea that women with breast cancer should automatically avoid Hormone Replacement Therapy (HRT), and how it can help with longevity etc. Iām planning to speak with my doctor about it, but Iām curious ā has anyone here looked into this or discussed HRT after breast cancer with their team? Would love to hear your experiences or any studies/resources you found helpful.
Double 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. Iām 43 and considered young for cancer (how niceā¦ been a while since Iāve been called young š ) I am still in shock so have gone into plan mode. I Still donāt 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? Iām not sure if my private will cover all costs of surgery as my surgeon (who operates privately) so far says Iām 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 šWhat to ask the surgeon post surgery?
Last week, I was diagnosed with stage 1 last week, ER+PR positive, HER 2 negative. Right side, very deep tho. A week later (!) I already did a lumpectomy and removal of some lymph nodes to test if it spread and decide if I need chemo. I was told radiotherapy is recommended. It was an overwhelming whirlwind this past 10 days, and I'm now trying to get back some control... I have my post op meeting with the surgeon this Tuesday am. Any suggested list of questions? I've also decided to ask her for 2 referrals for further treatment. Private (Cabrini Melb, where I was so far) >> I didn't really understood I have a choice to go to public... The Alfred - public, which is a walking distance from me... I've decided to go public pending in how soon they can see me. Any thoughts? Thank you all in advance! so glad there is a place to share what we're going through atm
Recently diagnosed DCIS
Hi, Like everyone I never thought I would be here...yet here we are! I have recently been diagnosed with IDC Er/pr + HER2- tumour was 9mm grade 3 ki67 40, lymph nodes negative but there were 3 cells. I'm 53 and postmenopausal with ovaries removed 2 years ago. I've had 2 surgeries in 4 weeks. The tumour was successfully removed, however the margin in one section showed DCIS right to the edge so they took a little more tissue which came back all clear. I met with my oncologist today and he has recommended 4 cycles of chemo, radiation and then hormone therapy. The Chemo he is recommending is TC, oes anyone have any experience with this treatment please. I'm pretty sure I will do it as I want to give myself the best chance possible for full recovery. Thank you