Breast cancer diagnosis- did you have a Mirena in place, like me?
I was diagnosed with breast cancer 3.5 months ago and had a double mastectomy 3months ago. I am 44 years old. I started doing some research as a number of people I know with breast cancer who were young also had a Mirena. There is new research coming out of: -Europe that indicates that there is a 40% higher risk of breast cancer if you had a Mirena, and -Germany that shows that the Mirena can change hormone levels in the breast based on scans I had breast ultrasound scans that show I did not have breast cancer just before my Mirena was inserted 5 years ago, and that it developed post Mirena insertion. I had no genetic factors (based on testing), and no risk factors for breast cancer. It seems highly co-incidental. I also looked up the FDA documentation for Mirena approval and it states that "Spontaneous reports of breast cancer have been received during postmarketing experience with Mirena. Because spontaneous reports and voluntary and from a population of uncertain size, it is not possible to use postmarketing data to estimate the frequency or establish causal relationship to drug exposure..." I am keen to connect with other women who had a Mirena in place and then were diagnosed with breast cancer. If this is you, please respond to this post- I would love to hear your story!
I dont even know what my question is..
I got a lump out and thought nothing of it. The ultrasound and GP kind of indicated it was in the skin not the breast tissue. So when I got a call to go back to surgeon a little earlier, I thought they were just checking the wound care. Until they said its what it is and booked me in for another surgery (this week) and had MRI and CT and biopsy. On a referral it says possible IDC and DCIS. Im getting a call tomorrow and surgery Friday. GP told me the lymph nodes are positive. Its been a blur over Christmas. Will I ever think about something else or will it always be on my mind before bed and as and soon as I wake and every moment in between? I've 2 kids. Im scared.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.
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
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?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 youDCIS - 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.
