❤️Suzy's Story: Navigating Breast Cancer and Autism
Today, we’re sharing a deeply personal story from one of our own Online Network members, highlighting the intersection of breast cancer and autism, and the unique challenges and strengths that can come with that experience. Suzy was diagnosed with breast cancer in February 2023, and describes the challenge of wanting connection, while also finding social interactions overwhelming - a difficult balance that many can relate to in different ways. Her story reminds us that there is no single “right” way to respond to diagnosis, only what feels right for you. 💪 👉 Read Suzy’s full story here: Living with autism and breast cancer: Suzy’s story 🤝 The Power of Our Online Network Suzy’s story is a powerful reminder of why this community exists. A place where you can: Connect on your own terms Share honestly and safely Feel understood without explanation Find support from people who truly “get it” 💛 Let’s Keep the Conversation Going We are so grateful to Suzy for sharing her experience - and for reminding us that our Online Network is not just a platform, but a community built by each of you. We’d love to hear from you: What helps you cope in your own way? How do you manage connection and overwhelm? What has your experience been like with treatment side effects? Your voice matters here. 💬
Another Re-Excision or Mastectomy?
Well, here I go again. I was diagnosed with DCIS in December. It has been a long path, but I eventually had a double lumpectomy on my right breast on 26 March 2026. A week later I was told that although they got clear margins, three of the margins on my largest lesion (4 cm) were less than 1mm. So, I had a re-excision on 15 April to get wider margins. I saw the surgeon this morning, who told me they found more disease and the new margins are still less than 1mm in two places. I have to have more surgery next Wednesday but have to decide (by Friday) whether to have another re-excision (and my breast will be starting to look a bit sad after that) or go straight to a mastectomy. She said it was quite feasible to try a re-excision again, to preserve the breast if I want to, but if they still find disease or don't get good clearances, then I have no choice but to have a mastectomy. If I have the re-excision, I have to have radiation treatment for 3 weeks, 5 days a week afterwards. If I have a mastectomy, then it's all done. No radiation and no lymph node involvement. Does anyone have any advice on what I should do / or want to share your story if you've had a similar experience? I know it's my decision, but your advice is appreciated, thank you.
Both !! Triple negative and HER2 positive diagnosis in the same breast synchronous
Hi i have just had a left breast full mastectomy and sentinel node/s excision due to initial diagnosis of extensive high grade DCIS. I had DIEP flap reconstruction at the same time. Tests of the removed tissue indicate both Triple negative and HER2 positive cancers (early stage) in the same breast at the same time. My surgeons are on leave. I have only received a partial summary report so far and don’t get full results or next steps for treatment til end of January. Is this unusual to have 2 types of BC at once? In the same breast? Any others have similar experience. The half news and lack of next steps just now with all the specialists away is a psychological and emotional challenge. Advice appreciated thank you 🙏🏼💪Be your best advocate with your treating team
We've compiled the following lists of questions to help support you in preparing for those appointments where you might feel a little confused or overwhelmed. These questions are designed to help you on the path to having your voice heard during appointments with your treating team as you navigate a breast cancer diagnosis. If there are additional questions not there that you feel helped you, please comment it below so we can continue to grow our impact in empowering patient conversations ❤️ Communication Support Communication with your treating team: 🔎 Questions to Ask: DCIS Newly diagnosed (DCIS) Early Breast Cancer Newly diagnosed (early breast cancer) Treatment (early breast cancer) Finishing active treatment (early breast cancer) Breast Reconstruction Breast reconstruction – questions to ask a surgeon Metastatic Breast Cancer Metastatic breast cancer diagnosis Metastatic treatment and care team Stopping metastatic breast cancer treatment Community Support Young women diagnosed with breast cancer Men diagnosed with breast cancer Questions to get support for First Peoples Questions to get support in remote and rural areas
Extensive DCIS with ITC
hi, I was diagnosed with high grade DCIS following a MRI late last year (showed as ~2.5cm), not picked up on US or mammogram. I had a lumpectomy, which didn't get clear margins at 7.5cm so based on that & the initial pathology (HR negative) I elected for a mastectomy which turned out to be the right choice as they found a further 8cm, so it was extensive. But they also found ITC in one of the sentinel nodes, which I believe is fairly rare with pure DCIS. They haven't found any evidence of invasive cancer elsewhere in the breast tissue. I'm waiting to see what (if any) further treatment the MDT is going to recommend, but it seems like it can go 2 ways (treatment or monitor only) and the guidelines for this vary by country. Wondering if anyone else has had this diagnosis and what treatment option they went with?
Preparing for DMX and DIEP Flap reconstruction
Hello and first of all I’m sorry that any of us are on this forum and going through the Sh-t Show…. I have surgery end of Jan 2026. I’m going to hire a recliner chair, I’ll purchase button up pjs and shirts. What else can I do? Does anyone have handy tips? High protein recipes that help with recovery? If you have a website of recipes that you can recommend that would be much appreciated. Is there any exercise I should be doing? With a month to go I’d like to do anything I can. Thank you all and with my kindest regards.
Radiotherapy after mastectomy for DCIS
Hi there, I had a mastectomy in September this year for intermediate grade DCIS, 38mm. When the histology came back it showed no margin to the skin, and only a 0.3mm margin to the chest wall. I was referred for a discussion with a radiation oncologist, who said that there is limited research in this area, and that she would be happy to treat me, or happy for me to continue with no further treatment. I'm struggling to decide what to do. I was wondering if anyone else has been in the same situation, and what helped them to make a decision?Ductal Carcinoma In Situ
A diagnosis of DCIS—Ductal Carcinoma In Situ—can be confusing and confronting. While DCIS is not invasive breast cancer and is often described as “pre-cancer” or “early-stage,” it still brings with it emotional, physical, and practical challenges. Many in our community have shared how difficult it is to reconcile being told it’s “not life-threatening,” while also facing surgery, radiotherapy, and long-term follow-up. The uncertainty around whether DCIS will progress to invasive cancer can be overwhelming. We want to acknowledge everyone navigating this path. Your experience is valid, and your feelings are real. Whether you’re newly diagnosed, in treatment, or adjusting to life after DCIS, this space is here for you. 💬 If you haven't already, join our Online Network group: Ductal Carcinona In Situ (DCIS) - feel free to share your story, ask questions, or connect with others who understand. 📚 Learn more about DCIS, treatment options, and support resources on BCNA’s dedicated page: DCIS Information HubHRT withdrawal after DCIS diagnosis
Hi there. Just this week had my DCIS diagnosis and am reeling - totally out the blue. All moving very fast so wanted to ask the community about HRT. I have been told to just stop it immediately. Im peri and been on it 18 months or so. Really concerned all my symptoms will just come back. Can anyone give any advice or perspective if they have had to do this and what has happened to them?
