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. 🤗❤️
High Dose Radiation to Chest Wall. Long-Term Side Effects?
Hello, My radiation oncologist has recommended a 20% higher than normal dose of radiation to the chest wall due to close posterior margin. I am keen to know what long-term side effects anyone has experienced from this type of radiation. Thank you for sharing.
New here...my story so far
Hello, I’m new the group and haven’t shared my story yet. It’s taken me a little while to be able to read some of your stories and not have ‘freak out’ moments. Thank you to all of you for sharing your stories. It is important to see the full gamut of what is happening and what is to come. In my initial moments I was overwhelmed reading here because I was so scared every time I read and got caught up in thinking if it would happen to me too. So I selfishly took myself away from reading and gave myself time. I was diagnosed with EBC (early breast cancer) in August after a Breastscreen appointment that picked it up. I have a fibroademona that was detected and checked when I was in my 20-30s so I fully expected that would come up in scans. In fact, I had noted a lump in my breast and had managed to convince myself that it was just the fibroadenoma that had grown. It’s amazing how we can easily convince ourselves isn’t it? Not quite delusion, not quite outright denial but I did have a few things going on at the time. I lost my job of over 20 years, Covid shut down the world and just when I was finding balance and working again I fell down some stairs and broke my leg. So for two years, I let other things take priority over having my Breastscreen checkup. I’m one of those cautionary tales and I’ve had to give myself grace and not blame myself too much over it and think on the ‘what ifs’. If I keep on the ‘what if’ I will just go crazy and overwhelmed emotionally and I have to get on with it. Decisions have to be made and now knowing what I know, I can’t wait any longer. Here is where I tell you all that this isn’t my first time with cancer. In 2010 I had surgery and radiation for a liposarcoma in my arm. I was finally cleared and cancer free by 2018/9. So I’ve had a few years of not thinking about it except when I see my scars. To say that I am scared is a huge understatement but I’m a planner and practical person mostly so I cope by finding solutions. I don’t know what the stats are on survival rates for my situation, it’s one of the questions I haven’t asked yet. Partly because I’ve gone into solution mode and partly because I am just that bit too scared I guess. My EBC journey so far has been all about finding a surgeon which I was lucky enough to be able to do from my specialist physiotherapist. I’d been seeing that physiotherapist for my arm and knew she also worked with many women with breast cancer. She referred me to my cancer surgeon. The decision to have surgery was an easy one after the sarcoma I knew it was necessary. Having the choice of breast saving surgery and reconstruction is a blessing. I chose to have my other breast symmetrised at the same time. To my thinking, if I was going for surgery I preferred to do it all at the same time. My surgery was 8 October so I am now 2 weeks post surgery this week and healing amazingly well. I’m grateful that my body heals so well. I am also grateful that I was able to read up on tips on the BCNA site. I chose to go private so that I could choose my surgeons, both of whom are excellent in their fields and have been wonderful. So what are my numbers? My EBC lump was 37mm Grade 3 invasive carcinoma, ER and PR 75% 3+ positive, HER2 negative with clear surgery margins. However, 2 of 3 lymph nodes showed metastasis with largest tumor deposit 22mm. That is the current concern and so I’m due to have a PET body scan this week and consultation with a radiologist and oncologist. My surgeon tells me that she wanted more information before deciding my radiation protocol and further treatment. I know I will also have hormone suppression treatment but am not there yet. I am thankful that the research on breast cancers is so extensive that treatment protocols are updated often. My surgeon tells me that previous protocol for lymph node involvement would have meant instant removal of all lymph nodes. Whilst I am grateful I may not lose all of my lymph nodes and that I may have options, a part of me is also really sad and scared knowing that the reason there is so much improvement in treatment is because there are so many women that have had to go through this before me. That’s me, my story so far. I was brief though wordy. I will continue to read and share where I can, you may have noticed that I struggle with sleeping 😊 Sad to be here, grateful to have your support.
Radiation - Is Moo Goo enough?
Hi everyone, I am currently undergoing a 6 week radiation treatment, two weeks in. I am using Moogoo 3 - 4 times a day and my skin is healthy to start with. I am having underarm, left breast and left lower neck. Due to the large area, I have been advised to use Moo Goo 3 - 4 times a day rather than Strata XRT and our centre does not offer Metipel (plus it is so humid up here in Cairns so would not really be viable). My skin is healthy and I am feeling confident, just wondering if anyone else only used MooGoo and if they had minimal side affects? I understand the worst will be the two weeks post radiation and know that two weeks in is very early days. Thanks for your advice and feedback :)
small steps forward
Hi everyone, just a little hello as I’m joining you on this journey and now feel brave enough to say hello. I was diagnosed June 28th, following a random self check, two weeks before a planned 5 week trip overseas; and since then I have commenced the journey of small steps through appointments and surgery, cancelling (postponing) the holiday, and I’m now 4 weeks post op - lumpectomy and lymph node removal/biopsies, I have a diagnosis of left IDC. no lymph node involvement, but dcis around the tumour found and also removed. It was a shallow tumour so whilst just enough clearance obtained near the skin, not as much as they’d like. So I’m about to start radiotherapy (in two weeks) with a little extra thrown in for good measure to ensure the skin is treated and be certain there’s no spread there. To say I’m anxious about this is an understatement!!! I also met the medical oncologist today too ( I’m 52 and well into perimenopause) and to commence tamoxifen post radiotherapy too. What a whirlwind/rollercoaster! I’m so very grateful it’s been found early and is being treated, sad that’s it’s happened and angry that life changes so quickly. But currently my fears are the radiotherapy side effects, particularly with the ‘extra’, and then the ongoing meds. I know treatment is optional, but I want to reduce risk of recurrence so will definitely go ahead with it, no question in my mind. But words of wisdom re how to do it ‘well’ or just knowing I’m not alone in my thoughts would be welcomed. Progressing with one small step after another, next step is mapping. Wishing you all well xNewly Diagnosed - Diabetes & Treatment Side Effects
Moderator moved @Dee8855 comment to dedicated discussion in 'Newly Diagnosed': Dee8855 Central Coast NSW 11:08AM Hi, I have recently been diagnosed with early stage breast cancer, on my left breast, it was found after having my regular annual mammogram, and was considered fairly small 14mm, Grade 2, ER Positive. I had surgery 3 weeks ago, lumpectomy and 2 lymph nodes removed, all came back clear, so I am very grateful that the outcome has been this positive. I still haven't had any other appointments to discuss further treatment, but I've been told that I don't need chemo (another blessing) but will need radiation and hormone blocking treatment. However, my problem is that I am also diabetic, insulin dependent and need to keep a very tight control of my blood sugars. I am concerned about what the effect the hormone treatment and radiation will have on my diabetes. I've been searching for any information about this, and most of it doesn't sound very positive. I know this is something I will need to discuss with my doctors, but I was wondering if anyone else has been through the same problem, and how they managed it? Just reading about the side effects of these treatments sounds very daunting, but having another chronic condition just makes it seem a lot worse. This is my first time on this forum, so I hope my question isn't too personal. Thanks for any advice.
5 day radiotherapy treatment
I have recently been diagnosed with low grade early stage estrogen positive breast cancer. I have had a lumpectomy and the margins and 4 nodes removed were clear. I have been offered the standard 3 week radiotherapy treatment or a 5 day targeted radiotherapy treatment which only delivers the radiation to the area of the lesion. Has anyone had this 5 day radiotherapy treatment?
