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
TC chemo 4 vs 6 cycles
Hello I’d like to hear from anyone who has had more than 4 cycles of adjuvant TC. I’m coming up to cycle 4 next week and I still don’t know whether that will be it or whether I will have to do more, because my oncologist has been on leave since straight after my first cycle. I’ve had a different oncologist and he has been consistory saying 4 but now is back tracking and saying it will be up to the other one! She won’t be back until early April, just before cycle 5 is scheduled. I am finding the side effects and mental toll very challenging. The uncertainty around how many cycles is playing into this because I can’t give work a definitive answer of when I’ll be back. I’m also a single parent and the fatigue is crippling. So I’d like to get an idea of in what cases would 6 cycles be given? If you had 5 or 6, why was that decision made? And what questions should I be asking of the replacement oncologist at my appointment next Tuesday to get some certainty around the timeline?
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
Cold Capping and hair loss experience with TC chemo
I went for my first TC chemo session with cold capping on a Paxman. I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. I was expecting a brain freeze but came nowhere near that in the 2.5 hours of the cold capping. I'm a skier so I'm comparing it to having damp hair on the snowfieds. The nurse said only about 20% of his patients keep their hair. I'm now paranoid it was ineffective and am sitting at home with a bag of ice in a large ziplock affixed to my head, which feels colder than the cap. Has anyone had a similar experience with cold cap not being as cold as you expected, but still had reasonable hair retention after that session?
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 😊
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.To Chemo or Not to Chemo
Hi everyone, Im 8 weeks post surgery (lumpectomy for ILC). I transferred from Peter Mac to my local public hospital under the impression i’d be doing Radiation.. moving between hospitals has lengthened my time waiting for treatment. After both multidisciplinary meetings, both medical teams have recommended chemotherapy. Everything I read says ILC doesn’t respond to Chemo. I’m so confused! I borrowed money to do the Oncotype test and have now been told it’s not accurate for premenopausal women. Anyone have a similar experience or suggestions on who I can talk to about how to make the right decision. To chemo or not to chemo? Medically: 2 x 2cm tumors removed, Clear Margins post surgery, one 1.4mm deposit found in one of three lymph nodes.
Early Breast Cancer Treatment Decision
Hi All, I recently was diagnosed with early breast cancer (stage 1, grade 2, HER Negative, Estrogen & Prog positive, no lymph nodes involve) three weeks ago I had a double mastectomy with tissue expanders for reconstruction. I now need to choose my treatment for post surgery. For my particular case the percentage for survival purely doing the double mastectomy surgery alone is 95% when I add hormone blocker treatment it adds another 1% so 96% total which has been recommended by my oncologist to take which I will. I have been also given the option to decide if I want to also do chemo or not, the percentage benefit for my specific cancer is less than 1% at about 0.3% (so the percentage still stays at 96% survival) Is there anyone with a similar case to mine and what you decided? Or if it was you what you would do? My immediate thoughts are for a 0.3% benefit that going through 6 months of chemo with everything that comes with that is perhaps not worth doing it? The other thing I will point out is if there are any tiny microcells left in my body anywhere that hormone blockers will stop them dividing and growing, but chemo would actually kill them. Bearing in mind there is no guarantee either way that reoccurrence will or won't happen. Thoughts?Young mum diagnosed IDC and DCIS.
Hello! Im 37 and was recently diagnosed in November with early breast cancer - IDC (ER+, PR+, Her2-) and then following my surgery they also discovered DCIS. Plan is chemotherapy starting tomorrow and then mastectomy/recon 4-6 weeks post surgery! Looking for advice on: 1. What to take with me to chemotherapy tomorrow (will be there approx 5 hours as will be trying scalp cooling). Also what do people wear when using ice gloves/boots/cold cap? 2. Any advice on TC chemo and how you tolerated it (I’m doing 4 cycles). 3. Any tips on managing chemotherapy with 3 children aged between 3-7yrs and a husband who works long hours but very supportive. Thanks so much!