Lymphoedema 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
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
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 xDCIS - 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.
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.
Indecisive
I am new to this group and beginning my journey. It is very reassuring to feel I can learn from other members experiences. Knowing that everyone’s situation is different and I am beginning to appreciate that there are a number of decisions ahead of me regarding treatment options. i was recently diagnosed with mass-forming, high-grade DCIS of the left breast. The mammogram detected a single 14mm lesion and an ultrasound detected a corresponding mass. So I understand that this is considered small in size. No hormone marker testing was performed on the biopsied tissue. I have been scheduled for a wide excision next week and my surgeon has given me two options: either have a sentinel lymph node biopsy at the time of the surgery, or wait until the histopathology report is back (after surgery) and then later do the sentinel lymph node biopsy if any invasive cancer is detected. I am having difficulty making a decision. I appreciate that if the biopsy is performed next week (whilst the excision is performed), I only then have one anaesthetic but if I choose the second option, I may avoid unnecessary loss of lymph nodes. Wondering if any other members diagnosed with a small high-grade DCIS have been given this choice and if so, what did you decide?
Lumpectomy vs mastectomy
Hey everyone, I finished chemo on the 4/4 and right after the Easter long weekend I was kind of ambushed with an early surgical appointment to sign the consent forms for surgery. I didn’t have my normal support person (my sister) with me and I don’t know how I feel about my decision. To give some context, when I was first diagnosed in October last year my opinion regarding treatment was to go hard and fast and just kill this damned thing so I can move on with my life. The surgeon wanted to initially do a lumpectomy and I refused and asked for a mastectomy. Then on a subsequent appointment once I had gone and done some research I asked the surgeon if he wanted to do a lumpectomy because I was going to have radiation and he said yes, that is would protect my lung tissue to keep the breast tissue. I then asked if I could have a mastectomy after and he said yes. Then in my previous appointment before Easter he said mastectomy and not lumpectomy, and there was a bit of confusion (and I felt I was being gaslit, not a term I use lightly) as I reminded him of what had been discussed previously and he told me I wasn’t in the right frame of mind to be making decisions (I am struggling mentally but with other issues, not the treatment plan as I understood it). So when I got to this new appointment, I tried to explain what had gone on and asked what my MDT had decided. The registrar I saw said they recommended a lumpectomy and clearance of 9 lymph nodes. The way he explained it to me was that it was better they take the most minimally invasive path as I wouldn’t likely get skin and nipple conserving mastectomy. That it was better to take a little with the option of more later rather than taking it all when it’s not considered necessary. I signed the forms at the time after stipulating that if I wanted one later that they could do that and he said without cancer it would be a low priority but yes. A week after this and I don’t know if the decision is sitting right with me- those who have had the lumpectomy and axilla clearance, how did you feel? And did you need to go back later and have revision surgery to take more margins or have the full mastectomy?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.
