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.
Radiotherapy (5 weeks)
If you haven't been through it yet and are worried, please don't. It sounds much worse than it is. The receptionists, nurses and radiographers are really lovely. It doesn't hurt. It doesn't take long. I was in and out within an hour or less. My boob was a bit itchy throughout the treatment and became redder as the treatment progressed. But it wasn't sore. I felt tired for about 30 minutes after the treatment. The first week after finishing radiotherapy, you could clearly see the area and a clear line where the radio was targeted, it was a bit bumpy but not blisters. From the beginning I put sorbelene on twice a day until my friend told me about Tallow cream, I alternated them at first but after a while just used tallow because I found the sorbelene made me more itchy. Second week after finishing; there where a few changes to my skin. It was the same as the after ejects of sun burn without feeling the burn. My skin turned a darker brown, then peeled back to a nice tan colour. I've had quite a few headaches since finishing radiotherapy but I get migraines anyway so it could just be normal for me. I wish you all the best throughout your journey with breast cancer. I hope I have helped to take some worry out of the whole experience. Think happy thoughts, love Becky
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
Radiotherapy after skin-sparing mastectomy & diep-flap-reconstruction?
Has anyone had radiotherapy done after their skin-sparing mastectomy & diep-flap reconstruction? Did it cause any issues with the breast flap? like hardening or shrinking? I had no lymph node involvement and had clear margins. It was decided in a team meeting with radio oncologist for me to have 5 weeks of radiation on the flap, due to younger age, size of lump (ILC-5cm) - although it was 2 bits lumped together into one and grade 2, pathology of the sample found focal-vascular-space-invasion, which hadn't spread anywhere outside the breast, but radio oncologist thought it could spread to lymph nodes in the future. Does this warrant radiation? I am on zoladex and ai. I have an appointment with the surgeon to discuss further but wanted to see if anyone has any suggestions or similar experience?
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.....
Negative impact of radiation on Flap (autologous) reconstruction??
Hi all, will have mastectomy in a couple of months time, am considering to have an immediate breast reconstruction (IBC) using my own tissues/ flap (autologous). Unfortunately, I will have a series of radiation after the IBC. I am worried the radiotherapy will kill/destroy/ causing complications on the flaps. I did some research at my end. However the comments were conflicting. Therefore would appreciate your advice. Please..no advice is too silly. Thanks heaps!Radiation Fibrosis Syndrome
Hi everyone!!!! I was diagnosed with BC last year. I had DCIS and IDC......I had conserving surgery partial mastectomy with a flap reconstruction done......I had my yearly follow up in June this year and the mammogram and ultrasound picked up a mass....I had the biopsy straight away and it didn't contain any cancer cells......It was necrotic tissue. So I had to go back to Breast surgeon 3mths later which was last week....She said I was fine....I saw my radiation oncologist the day later for my routine check up......He told me I have radiation fibrosis syndrome.......I have pain daily and have trouble with the tendon at the front of my arm pit and pain in my arm, breast and left side of my breast. He told me it wont get better but will probably get worse and if I can't handle the pain he will give me medication which settle down the inflammation in the under lying cells which were damaged through the radiation. I was wondering if anyone out there has had this and if anyone knows if I should just have the whole breast removed.....I would be grateful to hear from you.....I don't like the idea of living the rest of my life with daily pain and restricted movement in my arm. Thank you :)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.