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
16 Weeks Pregnant and diagnosed with aggressive hormonal breast cancer
As the title says, I am currently 16 weeks pregnant with my first child, I turn 32 in Feb and have no family history of breast cancer. My surgeon has said I will need a mastectomy in the next week or 2. To say overwhelmed and unsure about my future is a complete understatement. I have found limited people in the same position as me and really don't feel confident as much as everyone has told me to stay strong and positive. I know I'm very lucky to have the support I do have around me, but obviously it's such a different situation that no one knows how to approach.
Newly diagnosed - feeling lost despite stuff happening.
I was diagnosed a few weeks ago, rarer invasive mucinal carcinoma. Coping well with what I know is happening but not so well with what I need to do, or where to get explanations. I’m having a Scout clip implanted tomorrow because I can’t have the MRI my surgeon requested. I have a CRT (heart) device and MRI was requested because the cancer is not well defined. So now I won’t know extent, lumpectomy, mastectomy, until the operation. Operation is on 28th. I guess my main thing is who to talk to about what will happen next. Having Pre Op stuff at GP next week, but do I just wait until the hospital gives me more detail? Do I ask to see a breast care nurse, there’s one at the surgeons office? Seeing GP I have so much to ask and take in because I’m on lots of drugs for too many health issues and I have to stop some, take less of others. And my normal confidence has flown the coop. Is this just a normal reaction?
New diagnosis shocked and devastated
Moderator moved @susie55 comment in Activity section to new discussion post: susie55 Hi my name is Susie, today 30 September 9.30 I got my biopsy result I've got breast cancer I'm 54 year old, I'm shocked and devastated I feel lonely. My brain doesn't function anymore. My surgeon tell me to do few test and port insert and what kind treatment I’ll get. Anyone have any advise for me? My stress is rocket High at sky, I already can't sleep for couple weeks ( when I first fund my lump) always woke up cant back to sleep. Cant eat always worry a lot of stress. and I'm sorry English is not my first language I hope everyone who reading this understand 🙏 i never ever thought I’ll get cancer because I doing breast test every couple year and last year is Clear. Dr Said I have dense breast, Anyone have same problem with me? How to manage stress and manage another test and waiting the result? ( MRI, PET scan and heart Scan ) Manage the chemo etc …. Any help appreciate 🙏DCIS Diagnosis (Breast Cancer 8yrs ago)
Moderator moved @cancer_warrior62 post from 'Activity' section to dedicated post in 'Newly Diagnosed': cancer_warrior62 Don’t know if this is the right place for this but I’m struggling each day as it gets closer to my surgery date. I had breast cancer 8 years ago, stage 2 her2 positive had a lumpectomy, did chemo- radiation- Herceptin and 5 years on Tamoxifen, then end of May this year at my routine mammogram they found I had cancer again in the same breast this time it’s DCIS but next week I’m booked in for a Double Mastectomy. It’s hit me harder this time round and I’m crying at the slightest thing even though I’m trying to stay as positive as possible and also joking around with family to lighten the mood about it but anything could trigger me off. I’m always wondering what I’ll look like after as I’m not going to do a reconstruction. I may later down the track in a few years depending how I feel and it’s too much for me to go through. Any advice would be appreciated.
How to find a good medical team? (Brisbane / Gold Coast)
hi all - my partner has just been diagnosed with BC, it's very early days and we don't have a lot of information yet, but are wondering what to do about finding a good Dr (and possibly surgeon if it comes to that). We live in regional SE Qld, and my partner will most likely be seeking treatment in Brisbane or the Gold Coast. But we haven't been here long, we aren't really plugged into the local community yet and don't know anything about how to find the "right" help - and by that I guess I mean the best person/people for the job. Google searching seems like a pretty hit & miss option - everyone presents well on their website - but that's pretty much all we have to go on at the moment. Are there forums where people recommend medical practitioners in particular areas? I can't find anything here. [Edit: And I understand that the main forum isn't the place for naming names, so please feel free to DM me]
Waiting, waiting, waiting + frustration
I’m sorry, I’m really making the most of the solidarity here. It’s been almost 3 weeks since my diagnosis (43yr old, Grade 2, ER+ PR+ HER- mixed lobular/ductal) & I’m usually a super patient person, but I’m feeling quite down. I go for my PET scan & MRI tomorrow morning, early. I’m then seeing the surgeon again next week for hopefully a bit of a plan for treatment. I’m sick of not being able to plan or commit to anything. I’ve kept working as much as I can, but I’m getting sick of being told about friends of friends who have died of BC, or at the other end that ‘it’s so treatable & nothing much to worry about’. This morning I had my first real big cry, which made my 10yo daughter cry too, which made me feel worse. I cried because she has a grotty cough & so we had to take her with us for the 4 hr trip to our nearest imaging place & not send her to school or expose our neighbours to her germs. I cried because my oldest daughter had to stay behind. I cried because my oldest daughter turns 13 very soon & wants to be excited & plan her birthday, then she flips & apologises & says ‘don’t worry about getting me anything Mum’. I really know now how it feels to feel like a burden. I told my husband I should have just gone alone this trip, but he insisted on coming to keep me company, which I do appreciate. I’m so lucky really to be surrounded by so much love & well-intentioned support, but I think reality is really starting to sink in. I’m already sick of doing the 8hr round trip for the nearest cancer care, yet this is only the start. How do I decide what surgery is best? I don’t care much about my appearance, & I think a mastectomy & going flat makes the most sense, causes the least disruption to my family, but I feel quite sad still about losing my breast. Ugh. Anyway, no need to reply, just needed to get this off my chest.
Another sister reporting for duty
Hi all I’m Linda, a 54 yo from the Barossa Valley in SA, a wife, mother to 5 humans and 1 furkid, a lover of all things Disney & Robbie Williams and living with a fairly new diagnosis of DCIS. Historically, I’ve had 3 lumpectomies previously between 2003-2015 and been having regular mammograms since. In late January 2024 I had my 2-yearly mammogram, no symptoms although I did tell my husband I had a bad feeling on the day. Four weeks later I got a call from BreastScreen SA asking me to come in for further testing on an area that looked a little abnormal but likely to be benign calcification. The following week I attended my appointment and had further mammograms, an ultrasound and a very uncomfortable core-biopsy. Two days later I attended the results clinic with my husband where we were told the pathology came back malignant and I had Grade 3 DCIS. It was not what I expected to hear. Within 24 hours I’d seen my GP for a referral, seen a private Breast Surgeon and had a date for surgery (hookwire and wide local excision). Surgery was done on 08/03/2024. Side note - I’m a Clinical Nurse and a very empathetic, supportive and caring person who has cared for many patients in my career including providing palliative care to a dying friend so he could die at home in the arms of his wife. I’m also resilient when required but make no mistakes, I am a hot mess right now. I’m a practical person who likes facts, likes organisation and control of my life so this waiting period between surgery and my post-op appointment (scheduled 22/03/2024) with my surgeon to get my pathology results is challenging me, draining me and playing merry hell with my emotions. Although I don’t know what I’m dealing with until I receive the pathology results and I appreciate there are such worse BC diagnoses than mine, so I sincerely hope I’m not offending anyone else, but I can’t help but question my mortality. What is wrong with me? Working in the Theatre sector as a Clinical Nurse gives me the advantage of knowing inside information on which health practitioners are considered top of their industry. So I know I chose a great Breast Surgeon but my over-active mind is wondering why he hasn’t done a CT scan, PET scan or bone scan to check me out thoroughly. I’ve had no blood work done. I lost 25kg in 3 months late last year which was attributed to an IBS diagnosis, but what if it’s related to my cancer? I have no family history due to being adopted. I reached out to the local McGrath Breast Nurse several days before surgery and was told I’d get a house visit my first week home - that was last week and I’ve heard nothing. No follow-up call, nothing. I know it’s only DCIS but I’m screaming out for support and I can’t talk to my friends about this - it’s just repetitive and often a very draining conversation. Sadly, I have a very fractured relationship with my mum so am getting next to no support or acknowledgment from her so it’s just all a bit heavy and dark for me at the moment. What I’d give for an “I love you” from my mum! I’m guessing that come Friday that I may start to feel a little less lost and vulnerable as at least decisions can be considered once the pathology is known. Am I right? All of this is overwhelming as heck to me and I’m not sure what I should be asking at my appointment on Friday. You don’t know what you don’t know!! So any guidance is gratefully received. In closing, I’m sending each and every soul the squeeziest of hugs and best wishes for a positive day. Thanks for reading my blurb! Linda xx :(
