Early HER2+
I understand what Early is and I am grateful that I found something at the same time as my breastscreen mammogram and it is not in lymph glands, PET was also clear but they need a new name for Early. My treatment is starting 9/10 and will be Chemo (abraxane) & hercepton then surgery and radiation. I thought I had choice after doing a lot of research on trusted websites, listening to great podcasts and asking questions of my MDT but although they say I do they highly recommend the above plan. I am resolved to losing my hair and looking forward to the freedom no hair should bring me, I am self employed so can regulate my hours, I am active and look forward to keeping that going, as I know how good it makes me feel and again research shows, it helps us through chemo and everything else. What I struggle with is seeing others reactions to the news and seeing my husband frustrated by the time it takes to have tests and get things started. I would delay treatment even longer if I could but know that is not a good decision as the HER2+ is a grade 3. With a name like Early people seem to think 🤔 I will have an easy run, and I certainly hope I do but have read enough to know that I may not. People also say oh that’s good it’s not urgent then and not that bad. For someone who limits toxins as much as one can this is testing my self control to the limits and then having people say and think 🤔 it is going to be an easy road does not sit well with me. I am babbling and that is certainly something that has happened since diagnosis. I spent 24 hours in denial and 24 hours in why and have decided to tell only positive supportive people going forward and focus on things I can control and leave the rest to my team. thankyou for letting me rant and thankyou for all your encouraging posts and links which I have loved. Let’s kick this tumours out of here x
Wearing a bra 24/7
Hi. Recently had surgery for DCIS. Results are positive. Follow up appointment with oncologist. Surgeon was fantastic, but was not as supportive as I thought she would be. Has done her bit I guess. Dressings are off and need to keep covered when showering. Looking for advice on best waterproof dressings to use. Pretty tender under the arm. Little bit swollen. Taking panadol and ibuprofen. Waking me up at night. Wearing a bra 24/7. When does that stop?
Mets now in my brain
Hi Everyone my latest scan has been a shock and made me sad. I was on enhurtu and hoping for big success. However after 4 round 2 of my liver mets increased and now i have mets in the right side of my brain. I fell over in the last treat cycle and got a black eye and I also fainted one night. Luckily the bed was beside me when I fainted. My oncologist phoned me with my results Friday and I am numb. She said the plan is this. I get a port monday, tues chemo, thurs I have a skin check (melanomas) and the oncologist is ordering an mri of the brain for my radium oncologist. I don't have an appointment yet but the plan is to radiate that brain met. Then I have one other enhurtu infusion in September and another scan. My oncologist tells me there is other chemo we can try and the brain mets will be treated with radium. My husband and I are in shock and sad. My mets has progressed so fast - 2 yrs and several treatment changes already. This is so hard.
What to ask the surgeon post surgery?
Last week, I was diagnosed with stage 1 last week, ER+PR positive, HER 2 negative. Right side, very deep tho. A week later (!) I already did a lumpectomy and removal of some lymph nodes to test if it spread and decide if I need chemo. I was told radiotherapy is recommended. It was an overwhelming whirlwind this past 10 days, and I'm now trying to get back some control... I have my post op meeting with the surgeon this Tuesday am. Any suggested list of questions? I've also decided to ask her for 2 referrals for further treatment. Private (Cabrini Melb, where I was so far) >> I didn't really understood I have a choice to go to public... The Alfred - public, which is a walking distance from me... I've decided to go public pending in how soon they can see me. Any thoughts? Thank you all in advance! so glad there is a place to share what we're going through atmDo I stay or do I go?
Not your average post. Originally a backpacker from the UK, been in Aus 5 years and have moved onto a work sponsorship visa with my employer. I live in a very remote area and it is a 4 hour flight to my nearest 'treatment centre'. Two weeks ago it was confirmed (via biopsy) that in my left breast I have a 2mm invasive mass, and 10cm of non invasive DCIS. I had a contrast mamo and PET scan (no result yet) and scheduled for an MRI on the 6th June, and appointment with the surgeon to discuss options on the 10th June. My breast dr said the surgeon will recommend a mastectomy due to the large area of DCIS. Possibly chemo, radio and hormone therapy. They are also talking about what I want to do with my eggs. I am so scared, and I am not sleeping. I am only 34 years old without children. I don't know what to do, do I stay here in Australia and undergo the treatment recommended and stay near the hospital with the mother of a friend (who has also had breast cancer and has said she is more than happy to support me through required treatment). I love my life here that I have built over the past 5 years, and I love my job. I am scared I will lose my job with the next few months of treatment coming up (very little can be done remotely), my visa is tied to my job. I may get deported mid way through treatment? I dont know? I know I should speak to an immigration lawyer but I am already inundated with administration from cancer. My family back home are very supportive and will support whichever decision I make. They and I am also wary of the health care system back at home (which isn't in great shape). If I go home, I will take all my diagnosis letters and scans, but I will still have to start this process again from the start and basically be told twice I have cancer and they want to chop my breast off. I wont be able to get a job due to appointments and treatment, and wont be entitled to benefits as I haven't paid tax in my home country for 5 years. Its not just cancer anymore, I am not scared of the cancer as such as my whole life here being ripped away from under my feet. Sorry for the long post. I just don't know what to do for the best. Either way, I need to stay here until I have the full picture and know what the surgeon wants to do.Avoiding radiotherapy
Hi, are there any community members here that have avoided radiotherapy and then regretted it later? or vice versa. I had a very small pre cancer, which was non-invasive and I'm in my 40s. I am anxious about radiotherapy (long term effects) and though its the standard treatment (because the precancer was high grade), I am not totally comfortable with it, but perhaps that is normal? Any insights appreciated.
Newly diagnosed with DCIS - starting the rollecoaster
Hi all, I live in Geelong. I'm 41. Single mum to a 13yo son, co-parent 50%. I was diagnosed with DCIS estrogen+ on the 14th Feb. Luckily is stage 0, which eases my worries a bit. My mum and sister had stage 2, and they are in remission. So this gives me hope and keeps me positive. I am not scared of the surgery or radiotherapy...but just have lots of doubts of how is the process going to affect my ability to concentrate on my phd and thesis writing and my ability to work (part time teacher, looking for change in career). I'm considering taking an intermission from my phd, but I don't know for how long, and how I am going to support myself financially. Did anyone kept working or studying through the treatment? I'm a planner....but this doesn't have a timeline...and I think I just have to take a day at the time. I don't have a date for surgery and radiotherapy yet...I don't know how long is going to go for and how I am going to feel.....My guess is just go with the flow.....
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
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.
StratXRT - first use, not sure I’m doing this right?!
Hi all Invasive lobular carcinoma (Grade 2, ER+ PR+). Breast conserving surgery completed 4/9 (after a wide excision open biopsy on 6/8). Started the first of 15 radiation treatments today and have opted to use StrataXRT. Have only used it once and it doesn’t feel like I expected. Everything talks about a ‘gel’ ‘drying’ and forming a film but this feels like a greasy, not wet solution, and it doesn’t feel wet or dry or appear to have made any film - just a soft, slightly greasy layer similar to how your skin is after using a body butter. Am I doing something wrong? Can anyone who’s used this give me any advice? Keen to get on top of this before application 2. So grateful in advance for your assistance. 🤗❤️