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 😊
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).
Perth Breast Reconstruction Support Group Lunch /Fundraiser for BCCWA
You are welcome to join us on Saturday 25th October from 12:30pm at the Herdsman Lake Tavern in Wembley (private function room) where we chat about everything to do with breast reconstruction. It’s very informal - we buy our own food/drink & ask/answer questions from ladies that have done their reconstruction. This is the place to hear honest answers about recovery & what things you can do beforehand to make it a little easier. Simone Hall the tattoo artist will be there to present about nipple tattooing & you can purchase temporary ones to try at home to see what a huge difference they make to the finished breast mound. I will also be selling some gorgeous cookies to raise money for Breast Cancer Care WA - a fabulous organisation that has supported thousands of ladies & their families so please bring some cash (I can also take extra donations if you would like to add something more to help other ladies on their journey.) You are welcome to bring a female friend for company 😊Stacked flap reconstruction
Hi everyone, just wondering if anyone had a stacked flap reconstruction (DIEP plus another donor site). Unfortunately not enough tissue for a DIEP so I’m likely to need tissue from both my thighs, so wondering if anyone have gone through surgery that required more donor sites? I feel ok with the idea of a longer recovery, but wondering more about increased risks from a bigger surgery. Thank you :)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.
Surgery decisions
Hi everyone, So many decisions. I am having ALL the treatment started with 8 weeks of 4 F/N treatment of AC medication. By the end i was cooked. Now at the half way mark of my intended 12 weeks PAC treatment i don't think ill make thr full course as the side effects ramp up. Then Radiotherapy of up to 5 weeks of targeted therapy. They weren't lying when they said prepare for a marathon. I have hormone related lubenal BC to my left ONLY. Based in Melbourne. Post radiotherapy i have to make a decision about surgery. A mastectomy is required as the chest wall has shown intrusion there so I have been advised the surgery will mean they will take half or all the chest wall. And they also want to remove the lymph nodes. The surgeon has shown me pictures and he wasn't lying when he said it can be quite disfiguring. I thought I was certain I wouldn't care about being flat but the disfiguring images have made me reassess. I will not have the opt to do an implants. The choices are as follows. 1.Left removal stay flat or left removal diep recon. Dispose other half of diep flap. 2.Double mastectomy removal remain flat or diep recon using all flap. Im so overwhelmed and worried that if i choose flat especially on left that i might regret not doing recon. Recon and mastectomy and recovery time and double wound sites of areas that didn't need to be cut also flip me each day I think im going this way then I flip and go another way each day is different mostly im unsure whether I should continue cutting into parts of my body that have no issue. What im hoping to gain from the group are lived experiences as to what made you come to the decision you did. Any experience that might have had similar options presented to you. What was recovery like? What did you prepare for post surgery? What tips could you recommend for pre and post surgery rest and care. I fly at least once a month for my work and am told I will need compression stocking on my arms before during and post flights. This BC is like a gift that keeps giving the worse gifts. Then to find out in review that even the Hormone blocking meds come with its own side effects some people reporting its worst than treatment! Anyway sorry for the long post but will welcome anyone's share of experience. Thank you and i wish you courage and bravery if you are straddling this journey too!Perth Breast Reconstruction Support Group Lunch
Herdsman Lake Tavern, Herdsman Parade Wembley, Saturday 30th August 12:30pm. This is the place to speak with other ladies who have done Breast Reconstruction to get all those tips to make recovery that little bit easier. We also have Simone Hall the 3D Nipple Tattooist who will be there with her temporary tattoos you can purchase to see what a huge difference they make to a breast mound. You may bring a female friend along for company.
Mastectomy/Diep flap reconstruction - What to prepare for
Hello, I am heading into hospital shortly for a Mastectomy with a DIEP flap reconstruction at same time. I am starting to prepare everything now, ie stocking freezer, ensuring I have everything at home ready and staying to look at what to pack for my stay in hospital (5 days). My Plastic Surgery has asked that I bring in post op bra and if I have spanx or similar bring that in. The bra was no issue I got ones from Kmart and Berlei. In terms of compression pants, I am at a lose. So much on the market, Any recommendations, do I go for underwear type, shorts or just stomach ones. I would be grateful for any tips.Perth Breast Reconstruction Support Group Lunch
Join us on Saturday 28th June 12:30pm Herdsman Lake Tavern Wembley to meet with other ladies who have done reconstruction. Simone Hall the tattooist will be there to answer your questions about 3D nipple tattooing & you can purchase her temporary 3D nipple tattoos to see what a huge difference those circles of colour will make. You may bring a female friend for company - you will find us in the function room. We are a very informal friendly group - so bring your questions along and get realistic answers of what to expect.
Radiotherapy after skin-sparing mastectomy & diep-flap-reconstruction?
Has anyone had radiotherapy done after their skin-sparing mastectomy & diep-flap reconstruction? Did it cause any issues with the breast flap? like hardening or shrinking? I had no lymph node involvement and had clear margins. It was decided in a team meeting with radio oncologist for me to have 5 weeks of radiation on the flap, due to younger age, size of lump (ILC-5cm) - although it was 2 bits lumped together into one and grade 2, pathology of the sample found focal-vascular-space-invasion, which hadn't spread anywhere outside the breast, but radio oncologist thought it could spread to lymph nodes in the future. Does this warrant radiation? I am on zoladex and ai. I have an appointment with the surgeon to discuss further but wanted to see if anyone has any suggestions or similar experience?