Recovery times and support required following mastectomy and chemo
Sorry for long post... I'm new to this group. I was confirmed 2 days before Christmas with DCIS and suspected Paget’s Disease. I am facing a mastectomy and possible chemo, etc. I'm now looking at what my options are with respect to reconstruction. I’m seeing my breast surgeon tomorrow with my growing list of questions. So far she has suggested a reconstruction of the affected breast using a bit from my tummy. I asked about a double mastectomy - which she would support - but she said that type of reconstruction may not be possible as I don't have enough 'flesh' on my tummy. I'm still not sure what to do but I'm leaning towards a double as I don't want the anxiety of annual check ups moving forward, especially for my kids. I haven't met with a plastic surgeon yet, given the time of year. I am a 54 yo working single mother of 3 beautiful (mostly) humans aged 13, 16, 17 as well as 2 dogs and 2 useless cats. It's been a tough few years. My wonderful husband died unexpectedly in November 2023. Two months before that his mother also died suddenly and two months before that my mother had a life threatening seizure in front of me and was put into an induced coma and was in ICU for 3 days - she had had a stroke and breast cancer 6 months before that and she has Alzheimers. She then went into care two weeks after my husband's funeral. My Dad lives near by and is healthy - thank goodness. Given what's been going on, 'I don't have much left in my tank' to deal with this latest challenge but it is what it is. I am very lucky to have some wonderful friends and family (however it's not the same as having your partner support you.) So, I'm trying to prepare myself for what's coming - physically and emotionally. I'm wanting to understand what kind of help I'll need following surgery or surgeries. What will my energy be like? How long until I will be able to work, cook, clean, drive, etc? My kids are as helpful as any teens - which is OK but not great and the two eldest have especially busy schedules with lots of activities on top of doing their VCE. I appreciate that every situation is unique but knowing how others - particularly other single parents - have managed will help with my decision making and help me prepare for what lies ahead. Also, any referrals for mortality/grief counselling in Melb would be appreciated. Thank you. xx
Negative impact of radiation on Flap (autologous) reconstruction??
Hi all, will have mastectomy in a couple of months time, am considering to have an immediate breast reconstruction (IBC) using my own tissues/ flap (autologous). Unfortunately, I will have a series of radiation after the IBC. I am worried the radiotherapy will kill/destroy/ causing complications on the flaps. I did some research at my end. However the comments were conflicting. Therefore would appreciate your advice. Please..no advice is too silly. Thanks heaps!
DCIS
Hi everyone, I am new to this forum - and any forum really - I have a horror of any sort of social media. But I am struggling so badly emotionally right now. I have been diagnosed with extensive DCIS in my left breast - 60mm high grade (grade 3) with comodo necrosis - confirmed via lumpectomy surgery. Another 5mm high grade DCIS found under the left nipple in a separate nipple delay surgery. They have also found focal LCIS as part of the lumpectomy pathology. I still do not have clear margins. DCIS has been classified as ER/PR- and HER2+. Family history - my mother was diagnosed with breast cancer at age 44 and died at age 47. Youngest sister diagnosed at age 42 (triple positive type) and underwent double mastectomy and chemo. She is still thankfully NED 8-9 years later. I have one sister left who has no diagnosis (as yet). My mother and all three of us daughters have been noted to have dense breast tissue. I am 53 years old however given the extensive size of this lesion and looking back at some of the mammograms which did show mild calcifications several years ago- I expect this has been growing since my late 40's (if not earlier). The mammogram only showed a 15mm area calcifications, so the bulk of this DCIS lesion did not ever show on imaging. My sister underwent genetic testing at the time of her diagnosis which did not show any known genetic mutation. However, geneticist does believe there is likely some genetic link due to the very young age of both my mother and my sister at diagnosis. I will be having genetic testing at some stage as my sister's testing was 8-9 years ago now. Breast surgeon has now recommended mastectomy of the left breast including removal of the left nipple due to involvement in the DCIS lesion. He has said that I could reasonably argue "both ways" with regards to my right breast (i.e. there is an argument to take both breasts given family history etc. However, could also make an argument to keep the right breast and monitor. So it's my decision. I have (at this stage) decided to have a double mastectomy with Diep Flap reconstruction. The surgery is scheduled for 10th July. Part of my decision to go bilateral is because the diep flap is a "one chance only" surgery. I also have already had some biopsies on the right breast (benign to date) but am aware LCIS is generally bilateral and may indicate a higher ongoing risk to the right side. It's also a very big surgery and I do not want to have to ever face this again if possible. I am so so terrified of the surgery. Here's the main thing - I am absolutely shattered about losing my breasts. It seems such a radical surgery for a non-life threatening diagnosis. I am in so much mental and emotional pain and I have been having a LOT of suicidal ideation (although I don't think I would act on it - I just literally don't want to wake up most days). I can't bear the thought of having no feeling in my chest. I am so worried about possible ongoing permanent nerve pain and post mastectomy pain syndrome and "iron bra" syndrome. My breasts are the ONLY part of my body that I actually like. I already know that I will have massive body image issues and loss of confidence after this. I am incredibly depressed. I am seeing a psychologist (Dr Charlotte Tottman actually - she's so wonderful). I am trying very hard to deal with all this. I feel like I will be so judged that is my key pain when so many others would do anything to change places with me and my diagnosis. I am so very aware of that and it's very hard to be honest about this because I feel like I should be focussing on the health part and not my physical loss. It's not that I'm not very grateful that this was found so early and I should be able to avoid all the awful treatments (radiation/chemo etc) and even more so, that my life is not at risk like so many others. I just can't believe I still have to lose my breasts and nipples with this very early diagnosis. I can't believe it. I'm also really struggling with some health professionals (including my breast surgeon and plastic surgeon) calling DCIS "pre cancer" or saying it's not "real" cancer. I just can't bear it. I can deal with calling this bloody thing Stage 0 breast cancer or pre-invasive cancer. But to hear health professionals say DCIS is not even cancer when I have to suffer such a radical lifechanging permanent surgery - it feels like such a slap in the face. It also makes it SO much harder to accept this recommended surgical treatment. If it's not 'real' cancer, I'll keep my breasts thanks very much. Why do they do this? I cannot understand it - if it's to keep us "calm" - I can deal without being patronised?? So sorry for the long post. I don't know what to do with myself.Update
Hi all, It's been a while since I post something. A lot has occurred since the last time I post something. Unfortunately, I was not doing well with the weekly chemo and Immunotherapy treatment. Spend all Easter break in hospital due to infection, I became hypersensitive to needles and got a PICC Line inserted which lasted only for a few weeks as it got infected, and it had to be removed, my oncologist decided to insert a Port (which has been the best thing). I also became sensitive to all the dressing that they used on me, my skin was breaking down. I ended up in ICU due to my blood pressure going low. It seemed that after my weekly treatment my husband had to rush me to the emergency department in the evening due to high temperature and rapid heart rate. This went on for 3 weeks in May, my last admission was the worse one, my temperature wouldn't go down, ended up being septicemia, required blood transfusion, my liver functions weren't great at all. The levels were tripled. My oncologist started getting worried and ceased the chemo and immunotherapy treatment and decided to bring the surgery forward. Unfortunately, the lump in my breast hadn't decrease in size as the surgeon expected and the lymph node that was cancerous had increase in size. My plan was to have both breasts removed and then do the reconstruction at the same time, due to my liver function and current health status, my surgeon and oncologist decided to just remove the right breast and have the other breast remove and reconstruction done at a later time. I was deflated with that news, eventually I accepted it. I had my mastectomy to my right breast on May 31st. He also removed 10 Lymph Nodes (Which only one of them had the cancer). Three weeks ago, I started Radiation, and I have completed this on Tuesday (13/08/24). I see my oncologist next Tuesday (20/08/24) and he is going to restart me back on chemo, but the oral form. I am not sure for how long and if the side effects for the oral chemo is the same as the IV one. My plastic surgeon has placed me on waiting list at the Royal Melbourne Hospital for the surgery/reconstruction. I have accepted the way I look now.
Choosing a surgeon (Melb) -New diagnosis overwhelm
Hi there, Im 49 and had my first routine mammogram in September- no family history or symptoms. They discovered calcifications, had a biopsy then 5 days ago I was told I had breast cancer. Stage 2-3 6cm aggressive.That’s all I can remember to be honest as I was in so much shock. Got referred to my GP in the afternoon and had to get referrals to a surgeon. With no time to think and still in shock our GP recommended Dr Sarah Kemp at Cabrini Malvern and a friend (and gp) recommended Dr. Melanie Walker at the Epworth in Richmond. It was so overwhelming and fast. Im someone who can’t make even the smallest of decisions eg what shoes to wear in the morning! lol We have met one surgeon as they had an apt the next morning. Do I meet the other as well? Keen to know is anyone had experiences with these breast surgeons and their team? How do I choose? Any advice would be very much appreciated. Feeling very overwhelmed and stressed! also worried about work and finances… I guess that’s another question!
Total left mastectomy vs expander/implant?
Hi everyone - I’m newly diagnosed and have found BCN hugely helpful and reassuring. I have bilateral early cancers - invasive ductal (left side) and invasive lobular (right side). ER + PR + HER2 -.I believe ‘low grade, slow growing’. My treatment recommendation is: left side mastectomy, nipple/skin sparing with expander then later implant and right side lumpectomy. Followed by radiation and letrozole. Surgery scheduled for 22/11 at Chris O’Brien Lifehouse. The choice I have is left side total mastectomy or the reconstruction? For context, I’m middle aged, slim/small breasted and physically very active. Apart from the obvious surgery and post operative worries, my other concern is around the possibility of spending many months with ongoing breast related issues. Wondering if any of you have had a similar experience….and any thoughts/advice you might have? Thank you 🎀
Today's feelings in poetry
Lucky So lucky, people say. That they caught it when they did That it hasn’t spread That they got it all That I have insurance So, so lucky. That my friend told me about her cancer That I finally moved my arse and Went and had that mammogram That I live in the lucky country So lucky That my prognosis is good That my job will be there for me That I am surrounded by family and friends With their love, soup and casseroles. Lucky. That my new set are perkier Smaller, Scar-rier, numb-ier. A bit lopsided Like me. Some days though, I just feel A tiny bit Unlucky.
Drain pain
Hi all I am two weeks post left nipple saving mastectomy on left with implant reconstruction. Pathology after surgery found cancer in lymph nodes so I had a lymph clearance one week ago. I have found the recovery from the lymph surgery so much more painful and my drain site seems to be where the pain is coming from. The tube continually looks blocked with clots. The breast care nurse tried “milking” the drain today but it was so painful. Just looking to hear whether this is a common experience or whether I should be trying to get the tubes changed? Thanks allGoldilocks procedure
Moderator moved @Maxi3 comment to own dedicated discussion: maxi3 sydney Member Posts: 1 ✭ 1:55PM Hello to everyone!! I am hoping to find out if anyone underwent a “Goldilocks procedure” for their reconstruction? AND with flap or implant reconstruction do you lose full feeling in your breasts? Many thanks for any information Stay strong xxxFlat or DIEP Flap - doing my head in
I've looked online, and spoken with friends and others who've been through it, but my indecision is doing my head in. The time between available surgeon consultations is really dragging this out and giving me more time to work it out. History Bilateral BC, double mastectomy with immediate silicon implant reconstruction last October. In January, midway through chemo, an unknown infection sent me to hospital, and was only resolved once one of the implants was removed (during that stay, I was double-dosed on a strong antibiotic and my kidneys shut down temporarily). Now So now I have one implant, one deflated. I thought I definitely wanted DIEP Flap, but now I'm second guessing myself about possibly going Flat pack. I have thought about it a lot, and am currently continuing to lose sleep over it. I know this is my decision, but I would appreciate your thoughts, opinions and comments. I plan on trying your words on for size and seeing what resonates for me. How did you decide? Thank you in advance I want both the same - either filled or flat. (I know it won't be perfectly symmetrical) I'm tired of uneven. I like the shape of boobs. I'm 59, I know they've fulfilled any physical purpose they may have been needed for. I had a full hysterectomy 11 years ago, and boobs are part of what helps me still feel like a woman. The12 months since diagnosis have been a rollercoaster of tests, research, learning, surgeries and hospital stays. I'm ready for these boob chapters to be all over. I know my friends and family love me regardless of my shape. Other considerations DIEP flap - costs a lot - it's a long surgery - could be hard on my kidneys - long recovery The future could still include - revision surgery - more scans - random nerve pains Associated tummy tuck would be good! There are more fun things to do with 30 grand. When it comes down to it, Costs and risks. What if I regret my decision? DIEP Flap - having things go wrong, either with the surgery, the result, or down the track Flat - feeling less me From your personal experience, is there more I haven't considered? Thank you 🙏 P. S. I know this post is all over the place, but so is my head 😏
