Bilateral mastectomy + SLNB + TAD
Hi everyone, I'm having a bilateral mastectomy in two weeks, and while I've been getting information from my medical team, I know there's so much that only people who've been through it can share. If you've had a bilateral mastectomy, I'd really appreciate hearing about your experience. Looking back, what do you wish you'd known beforehand? What should I realistically expect during the first few days and weeks of recovery? I'd also love any practical tips, such as: Things that made recovery easier. What you recommend doing before surgery to prepare. Items you found helpful to have at home or in the hospital. Advice for managing drains, sleeping, showering, getting dressed, or moving around. Things that surprised you (good or bad). Any emotional or mental health tips that helped you cope. I know everyone's experience is different, and I'm not looking for medical advice—just personal experiences and practical wisdom from those who've been there. Thank you so much for taking the time to share. Reading your stories and advice means a lot as I prepare for surgery.
Post surgery pathology
Hi there, I had a double mastectomy last week following a cancer diagnosis in April. I had sentinel lymph nodes removed as part of the surgery and am assuming the lymph node testing will infom the next steps/stage. I was disappointed to hear that the pathology on the lymph nodes will take at least 6 weeks due to a massive backlog in the Tasmanian public healthcare system. I'm curious to hear how long the wait is for lymph node testing in other states. I'd appreciate hearing how long other women generally have to wait please. I'm pretty anxious to know if the cancer has spread beyond my breasts, as well as to find out what the next steps are. Thanks for reading, Anna
Struggling to make surgery/reconstruction decision
Hi everyone I have been diagnosed with high grade DCIS with an MRI showing a potential small spot of invasive cancer in my right breast. I have to have a mastectomy and I am booked in for surgery next Monday (8/9) but I am struggling to decide whether to have a bilateral mastectomy and what type of reconstruction to have. I have phone consultations with the plastic surgeon and the breast surgeon tomorrow and have to make the decision during these consultations. I am conflicted with what to do as I am waiting on the results of genetic testing (I had a tumour that was borderline cancer removed in December last year, which included removing an ovary and a fallopian tube) so am extremely fearful of having to go through this again. My initial reaction has been to get rid of both to be on the safe side which my surgeon was supporting but during a phone call with her yesterday she thinks my best option is to do only the affected breast and leave the other one. The reason she is recommending this is the left nipple can not be spared due to this breast being more saggy and the blood flow (don’t really understand it completely so that may not make too much sense) so at then end of the day if I choose to have the bilateral mastectomy I will have no nipples which she is worried I will regret. if I only do the one breast I may have enough fat on my stomach to do the flap surgery and they should be able to spare the nipple. I do not have enough fat on my stomach to do two breasts so would need to also take fat from my thighs. I have decided against this due to the scars that would be left in my thighs so if I have the bilateral mastectomy I would opt for implants. I would appreciate any input from anyone who has had a similar experience as I am at a loss what to do and only have tomorrow to decide. Specifically, if anyone has had to choose between a single or double mastectomy and has experience with nipple-sparing versus non-nipple-sparing procedures, or if anyone has had regrets about their choice, I would really value hearing your perspective. Any advice or experience would be a huge help right now. Thanks.
One week until my surgery....
Hi Everyone! Reaching out to my online friends. Today marks one week until my surgery for the bilateral total mastectomy and left axillary dissection. I have chosen to go flat and Im ok with this decision. Any words of advice, encouragement, essential items you packed when you had surgery? I have the button up PJs. My surgeon said I will be in hospital for 4 nights as he wants to monitor the drains and hopefully remove them before my discharge home. But any advice to help me mentally, any tips support would be appreciated. Physically I am going ok, I have finsihed 4 rounds of the red devil; 1st milestone done! Now Im mentally preparing for next week. At least I get to have a lovely Easter break with my family prior to surgery. (no horror stories please.....Im trying to stay positive and resilient). Thanks my friends xx Post my surgery recovery I will need 15 sessions (1per day x 3weeks) of radiation. But first my mind just needs to deal with the surgery next week as the next milestone.
Chances of phase 2 of DIEP flap reconstruction
Hi all, I am considering doing Diep flap reconstruction after a Mascetomey tissue expanders. But I've heard from other chats that women have had to do "phase 2" of diep flap reconstruction, my PS hasn't mentioned this. I was under the assumption that if all goes well, that it was only one surgery to transfer tissue to reconstruct the breasts. I am feeling a bit anxious with the chances of having to do more than one surgery and thinking of implants now. I'd love to hear from any women who've had diep flap reconstruction and implant reconstructions. Thanks 😊Extent of numbness following double mastectomy
Hi! I’ve recently been diagnosed with early stage breast cancer and require a double mastectomy. I’ve been trying to come to terms with the need for this treatment. I’m wondering if some of the lovely survivors out there would be able to tell me how it feels post mastectomy? How much of your chest is numb permanently? Does PMPS become mild long term?
Radiation post DIEP
Hello all, I am exactly 4 weeks post double mastectomy and DIEP (including complete node clearance) which I had after 6 months of neo-adjuvant chemotherapy. I had TNBC in my right breast with 3 nodes involved on the same side. My pathology report said I had clear margins and a complete pathological response 🙏 I have now been given the option of skipping radiation if I want to. A new study (B-51 study) published last year found that patients with complete pathological response to chemotherapy and a double mastectomy don’t benefit from radiation therapy. My question is has anyone skipped radiation or was given the opportunity to skip it and chose not to? Also, has anyone with a double mastectomy and DIEP done radiation and what were the side effects on the breast? Lastly, has anyone received radiation in the neck region and what were the side effects like? Difficulty swallowing? My radiation specialist suggested if I choose to go ahead with radiation she would recommend the sub-clavicle nodes in the neck (along with breast and armpit) as they’re the only nodes I have not checked surgically. Would be keen to hear anyone’s opinion or lived experience. Thanks 😊
Managing hot flushes & mastectomy?
Hi there! I’m 43 and just had my last round of chemo for her2+ breast cancer. I’ll be having surgery in 2.5 weeks, likely a double mastectomy. I’m Australian but I live in Paris, so it’s winter here currently. Whether it’s the chemo side effects or the chemo pushing me into peri-menopause, I’m having a lot of hot flushes at the moment and taking layers on and off. I’m a bit worried about dressing right and juggling this in the immediate aftermath of surgery. Anyone had similar? Any tips? Thanks so much!
Electing to have double mastectomy?
I apologise in advance for not necessarily knowing all the correct terms when I am asking this question! I was diagnosed three weeks ago with invasive lobular cancer in my right breast. I also had one lymph node that the biopsy showed as being inconclusive. I was told the tumour was very slow growing and was hormone receptor positive. All PET/CT/MRI scans etc showed everything else as clear. I had a right sided mastectomy last week with a breast expander put in and 6 lymph nodes removed, two came from under the arm. The pathology post surgery said the tumour was removed with clear margins and also that the lymph nodes were all completely clear with no cancer in them either. I have been told that I don’t need chemo or radiation but will need to start the hormone blocking tablets soon as well. We are now looking at the reconstruction options and I do want to do a reconstruction. My surgeon and plastic surgeon have said I am an excellent candidate for a DIEP and it has been suggested I could do the left breast at the same time if I wanted to. I am quite keen to never go through this again and am thinking of doing the other breast. My husband has said it’s up to me and is supportive of whatever I choose. Has anyone else had the second breast removed despite there being no indication that it’s necessary? If I do have the double mastectomy do I still need to take the hormone blocking tablets? thanks in advance (and I have requested to join the reconstruction group).