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
Lymph node visibility in imaging
Hello, I've been reading these forums for a few weeks and finding them very helpful - thank you to all that share their knowledge. I'm trying to understand more about lymph nodes and imaging. For my backstory... My ultrasound showed nothing suspicious in my lymph nodes. A month ago I had a lumpectomy for IBC (1cm ER+ PR+ HER2- grade 1) and sentinel node biopsy where they found spread to 3 of 4 lymph nodes including one with 0.3mm of extranodal spread. On Monday I had CT and whole body bone scans. Today the surgeon rang to say the scans were all clear however the next step is more surgery to remove 12-20 lymph nodes. This sounds like axillary lymph node dissection. I'll get the reports and paperwork next week to make better sense of it and then I'll chat to my breast care nurse. We're a bit puzzled over how my lymph nodes are so involved for such a small grade 1 tumour. I'm wondering whether my involved lymph nodes should have shown up on the ultrasound, and whether nothing showing up on the post-surgery CT is a useful sign that other nodes might not be involved. Does anyone have experience of lymph node involvement without it showing up with imaging? Or do they show up on some types of imaging but not others? Or did you have axillary lymph node dissection even with a clear CT scan?
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 🙏🏻 🙏🏻 🙏🏻 ☺️ Constance
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.Just need to talk to someone
I’m 59yo and newly diagnosed with breast cancer. I’m really not sure I get what is going on either because I’m just slow or it’s just not all clear yet so I feel confused, in total panic and that I’m drowning and there is nobody to save me 😢 I am waiting for an mri this Thursday. I have a 10cm Not Special Type Grade 1 something positive to do with hormones and her2 1+. The surgeon says mastectomy is the only choice because of the size. There isn’t anything clear about what happens after that… is that how it’s meant to be? I just feel very lost appreciate any words of wisdom for these circumstances? susanLymphoedema Information & Events
Lymphoedema can develop after breast cancer surgery or radiotherapy treatment. If lymph nodes are removed – usually from the armpit – fluid can build up and cause swelling known as ‘lymphoedema’. Find out what causes it, ways to reduce your risk of lymphoedema, and what to do if you develop lymphoedema. Signs and symptoms of lymphoedema Reduce your risk of lymphoedema Lymphoedema treatment Compression garments for lymphoedema Coping with lymphoedema Watch Ask the Expert 'Living well with lymphoedema' - with Maree O’Connor
Wearing a bra 24/7
Hi. Recently had surgery for DCIS. Results are positive. Follow up appointment with oncologist. Surgeon was fantastic, but was not as supportive as I thought she would be. Has done her bit I guess. Dressings are off and need to keep covered when showering. Looking for advice on best waterproof dressings to use. Pretty tender under the arm. Little bit swollen. Taking panadol and ibuprofen. Waking me up at night. Wearing a bra 24/7. When does that stop?Here we go again...
I've decided I was a bit nieve (not sure of spelling) about original diagnosis/treatment in 2023 so facing it again in 2025 is a bit of a shock. I live in Bundaberg and can not fault the system from detection, diagnosis and treatment as it was speedy. Might have been why my attitude was.....got breast cancer, have treatment, get over it and move on so I didn't let it consume my life. I felt blessed it was found early, I was told if you have to get cancer it is the better variety(grade 2, invasive lobular carcinoma in situ er +, Pr - ,her2 - )and it wasn't in any nodes so it was lumpectomy, radiation and hormone blockers. I have to say none of that terminology means anything to me now so I need to do a refresher. As part of my annual checks, concerns arose around a lymph node and two months later I'm home from surgery having lymph nodes removed. That's about all I know so not sure where to from here other than changing my attitude and thinking I'd better pay more attention to cancer and connect with others. I do think I'll tell the medical oncologist I don't like being in the 20% band where the blockers didn't work 😉🙂 as facing cancer again was not on my radar.
Scared and lonely
Hi everyone, I was diagnosed about 2 weeks ago. I have cancer in both my left breast and the main lymph node under the armpit. It has been a hell of a last 9 months. While on a holiday in Thailand with my husband for my 60th birthday, he told me that the spark had gone. One month later he said he wanted a divorce. Five months later I was diagnosed. It has been three weeks since the tumors were found and still waiting for scans. Hopefully tomorrow at my first oncology appointment. I am living in the family home with my husband (who I love still) in the bedroom downstairs and one of my daughters. This whole situation is so hard to accept. A regular ultrasound showed a cancer that had progressed beyond the breast. It makes me wonder why they aren’t yearly.DCIS, DMX reconstruction new diagnosis
Recently diagnosed DCIS Stage 0. Opting for DMX and reconstruction using my tummy fat same day…. Videos and some social media groups are TBH quite confronting and disturbing. I would rather know but….. Reading and hearing how awful the recovery is, pain, discomfort, loss of movement and after some helpful tips to prepare please: particularly diet, did you change your diet pre surgery? High protein to help with recovery? Can you recommend a website or recipe site? Things post surgery: hire a recliner to rest in, did you hire a wedge or breast pillow as well? Button up shirts and pjs, anything else that you found useful please? I’ve heard about the drains which sound daunting… what do i need to do with them? Toileting and cleaning myself… I hear you can’t put your arm around your back to wipe? I’ve got wet wipes but …. Don’t want to ask my partner to wipe my bum? Diet after surgery to avoid constipation. Any tips would be greatly appreciated thank you so so much.
