Not sure where to turn for advice
Having been recently diagnosed with a 7.7cm tumour in my B-cup breast (luminal A, invasive ductal carcinoma) and no detectable tumours elsewhere, I've been scheduled for a mastectomy next week, followed by radiation, and possibly chemo, age 43. I don't want to have a mastectomy or subsequent treatment, for a number of reasons. Psychological firstly. Not having longevity as a goal. Not feeling I can physically show up and consent to disfiguring, aggressive and permanently polluting (of body) treatments - feeling that I'd rather die a natural death. Not fearing death. Not feeling any psychological aversion to what's in my breast, not feeling any pain or physical inconvenience from it currently. And also because if it hasn't spread in all the time it took to get that big, evidence that I've found seems to indicate it's not going to spread. (i.e. cancers between about 6cm and 15cm at diagnosis have about equal chance of also having been found in lymph nodes or elsewhere at diagnosis - the 15cm cancers were once 7cm but no greater chance of spread in all that time? Seems the horse has already bolted and is just hiding out dormant elsewhere in body already, or is just peacefully grazing in its own paddock and will never bolt, so either way what's the point in closing the gate / lopping the tit anyway?) I know this is such an unusual way of thinking and I'm having so much trouble getting relevant advice. If I don't get treatment what can I expect my body to do? I'm also very worried about causing distress to people close to me who still expect me to get these awful treatments, I feel pushed by their expectations to do something major to my body I feel personally averse to, I don't know how to tell them. Wondering how to not distress others in any way, seems to be the cause of the majority of my own distress. Any suggestions for where to turn for more advice, or if anyone has had similar thoughts, or evidence/articles to contradict the idea that cancer spreads early in its development if it's going to at all, or just impressions about this situation you might like to share, I would appreciate it. (I have just started seeing a general counsellor with no cancer knowledge, and have also contacted Cancer Council counselling and made an appointment but that will be in 3 weeks. I don't think they'll have the medical answers I'm after, anyway. More support and sooner and more relevant could be so stress-relieving.) Sorry for long post and weird topic.
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.
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.
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 all
Early stage lymphoedema
Hi everyone. So I’ve just come back from one of my lymphoedema clinic appointments and they said my sozo measures and arm measurements were a bit high. I’ve been given some extra exercises and self lymph draining massage instructions to do but I was just wondering for anyone who has had reversed it fro this stage had any extra tips that I can do to maximise my chances of turning this around ive got another appointment in 5 weeks and if it hasn’t changed they want to look at compression which I’m keen to avoid with the weather warming up I’m a busy mum of three and work from home on our own business too so there’s no time for gyms or yoga or anything like that, just looking for extra things I can incorporate into my already packed days. Appreciate any tips and tricks that you may have just for background I’ve had left side mastectomy, full auxiliary clearance, 3 weeks radiation and 16 rounds of chemotherapy all completed. Still doing immunotherapy and taking anastrozole Thanks and have a great day 🙂
Going public - will I have any choices
Hi all - I received a call last week telling me that my biopsies show cancer in one of my breasts. It's not a total surprise as there is a very strong family history of it - I always felt like a ticking time bomb. Regardless, I feel like a bit of a zombie at the moment, the situation is consuming me. The shock of it and not knowing what is ahead is awful. I have an appointment with a surgeon at a public hospital tomorrow. I suspect they will recommend lumpectomy with radiation, but I would prefer to just have a bilateral mastectomy and be done with it. I watched my mum go through 5 years of anxiety wondering if it was coming back. Ideally I would have the immediate reconstruction, but I presume that wouldn't happen in the public system. Has anyone gone through the public system and been given choices as to the treatment they have, or do you have to go private to make these choices? How can I find out what it would cost if I was to fund it all ourselves? Just wondering if we can find the money, how much would we need?
Bilateral Breast Cancer
I was diagnosed with bilateral breast cancer in late September and am scheduled to have a double mastectomy and reconstruction in mid November. Still trying to get my head around it all - it is becoming more real. I have been trying to hold onto my normal for the last few weeks - work and life in general - this is proving more challenging as the days go by. I went to give blood on the weekend - I guess I am not too surprised that I was not able to - in addition to learning that I wont be able to this again until 5 years post the end of treatment. My most recent mammogram (18 months ago) was clear and I was doing doing all the recommended things - go to drs if you notice any change in your breasts. I went to the Drs with what I thought was a breast cyst - having previously had these - and got a referral for an ultrasound. Went to ultrasound appt on the Friday - for what I thought would be 30 mins at most with a possible drainage of the cyst. Not so - 2 hours and 3 biopsies later I left the clinic. Tried not to focus too much on it all over the weekend - however first thing Monday morning I have a call from my GP - and an appt made for the afternoon....it has been a whirlwind for sure.
