Recommendations-North Brisbane -Public v Private- Surgeons
Hi Everyone, I do hope everyone is travelling as well as they can be. Was hoping to hear of experiences and recommendations about Public v Private -North Brisbane. My GP has advised if I choose to go private then I need to find surgeon and they can send referral. Not sure where to start…have rang some surgeons, am feeling like I am looking for a needle in a haystack. Has anyone had experiences with going private and having significant out of pocket expenses? Or going Public and what wait times/facilities are like, that they are comfortable in sharing. Preliminary advice is that it is likely treatment will be Chemotherapy then surgery, nothing confirmed until appointment with surgeon.
Struggling through Chemo
Hi all, My nurse has just introduced me to this group. I’m hoping to connect and share my story and hopefully somehow feel better. After being diagnosed and a short time later having a mastectomy and all lymph nodes removed, chemo started just before Christmas and I am struggling with it! Ive got another 2 months of chemo before 5 weeks of Radiation…… would love to hear other stories. I have a fantastic support group of family, friends and colleagues but they just can’t possibly understand what I’m going through. Looking forward to connecting 😊
Triple Positive HER2+
Hi everyone BCNA Online Network established a Group with Triple Positive breast cancer which is useful also for people who might be HER2+ but not positive for oestrogen or progesterone. This post is also to alert previously accepted Triple Positive Group members: you might not have been automatically transferred across to the Triple Positive Group with the recent upgrade to the new BCNA Network site. Please do request to rejoin the Group (I did)! Ned01CheriSukiCheriAnna15FeRnurserachMareealsoTriplebreast240Number2CaitySXC1947
DIY Cold capping chemotherapy
Diagnosed week before Xmas I have grade 2 breast cancer, 5 tumours removed so far, starting chemo in next week or 2 for 6 months, then having full mastectomy after that, I want to know if anyone has brought cold caps which ones would u recommend or the companies that hire, who is the best I live in qld I have long hair and struggling with the thought of losing it all
Feeling scared and just a bit angry
Hi, I'm Karen, 61yo, from Victoria. I was diagnosed in September, my birthday actually, I was numb. I had been dealing with a very coercive relationship, narcissism, gaslighting the lot, to be told this news was just too much, I had all sorts going through my head, How do I tell my children? How do I do this? Why me? Everything was so hard to process and even now I'm struggling. I was told it was an Oestrogen based cancer, sorry I cant remember much of that conversation, but 2 Biopsies, the first one they biopsied the wrong lymph node, Pet scan, M.R.I and blood test later to be told sorry its not good news, well having a lump in the breast isnt good news anyway but, I had my right breast and Lymph nodes removed, then to be told its bad news I'm so sorry was another kick in the guts, 35 of my 36 nodes were affected, so onto another more thorough Pet scan, blood test and M.R.I, To get the good news that it wasn't anywhere else in my body. Now I'm preparing for Chemo to start on the 2nd of Jan and I'm absolutely terrified, I have no emotional or any other support at home, even though I'm told everyday that he cares, they say actions speak louder than words well Im yet to see any, my son who is my heart, doesn't know how to deal with this and neither do I. They have just had an Eptopic pregnancy and I'm hurting for them, we were all so excited and happy. I don't know what to do or how I'm going to do it, my living situation is so toxic to my mental health and is impacting on my son and daughter-in-law as well. My partner is trying to get me out of the house and that is something I can't deal with at the moment as I'm trying to deal with being there for my son and daughter-in-law and Chemo, I feel like I'm rambling, my life is a mess, I just don't know what to do. Sorry for the rambling talk I'm not very good at putting things on paper, everything is very disjointed.
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.
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.
Chemo tips / hacks?
Hi, lovely ladies is update from me I done my pet scan and have good results and I got a call from my day oncologist today and they already set my treatment dates. Starting next week with paclitaxel weekly for 12 around and carboplatin. Pertuzumab,trastuzumab three weekly so 4 round Is there anything I have to bring during the chemo? And do any of you have or had any similar treatment like mine ? I’m her2 positive Any tips or hacks for the chemo side effect? I’m very nervous and have no idea of what to expect so any guidance is appreciatedCold Cap availability in public centres in Sydney/Newcastle
Hello everyone I was recently diagnosed with T2 (2.5cm), grade 2, HR+, with micrometastases in one sentinel node, which officially put chemo on the radar for the treatment plan. I pushed for the Oncotype DX but the advice from my treatment team was that as I had a couple of red flags (I'm premenopausal, have a slightly high Ki67 score and it had already travelled to the node) the recommendation is to do 4-6 cycles of TC even if the test returns a low recurrence score, so I've cancelled the test and am now fully focused on how to limit the harm from proceeding with chemo. Keeping some of my hair and limiting the time for regrowth is a huge part of this, so it's a big priority for me to go for the cold cap. I don't have private health insurance as I had bowel cancer exactly 5 years ago now, and had been waiting to clear it to get better premiums, plus I was treated so well on the public system that I questioned whether I needed it. But it turns out I can't access the cold cap in the Central Coast where I am based, and most nearby options are private. I would love to hear from Sydney and Newcastle based community members who know of cold cap availability at public hospitals, especially if you were treated there and had a good experience. So far I can see that Campbelltown, Blacktown and Chris O'Brien Lifehouse all offer the PAXMAN system, along with the Mater hospitals which I think treat some patients on public? I go back into surgery to get better margins on Wednesday so I couldn't start before the end of November... but that's also right at the end of the 8 week guideline from my first surgery, so am feeling the time pressure to get a second referral! Thank you so much for any guidance you can share :smile:
